› Forums › General Melanoma Community › Am I being unreasonable? Thinking of switching specialists…
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Hope Returning.
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- May 13, 2011 at 12:15 pm
Morning all,
I am becoming increasingly frustrated with my husband's care under Dr. Ibrahim. I am hoping that you all will be able to put this into perspective for me and tell me whether I am having unreasonable expectations or not and whether perhaps I should check into moving my husband's case to Dr. Hodi. I know at least one person here has him as their doctor and has given him a glowing review.
I would just like some feedback whether I am being unreasonable in my expectations or if I have some justification in my concern.
Morning all,
I am becoming increasingly frustrated with my husband's care under Dr. Ibrahim. I am hoping that you all will be able to put this into perspective for me and tell me whether I am having unreasonable expectations or not and whether perhaps I should check into moving my husband's case to Dr. Hodi. I know at least one person here has him as their doctor and has given him a glowing review.
I would just like some feedback whether I am being unreasonable in my expectations or if I have some justification in my concern.
We were able to get in to see Dr. Ibrahim at DF pretty quickly (I thought)…less than 2 weeks after starting the process (we had to get all his med records and test results forwarded as well as notes from all the doctor's he'd seen in the 2 years since Don's original diagnosis). From that point on is where my dissatisfaction begins.
At Don's first appointment with Dr. I, she tells him that his original tumor area had been extracapsular and had infected the surrounding tissue, so his chance of reoccurence was high risk. Then she tells him that she was concerned about how quickly the tumor had grown under his arm and was worried it might mean his melanoma was an aggressive kind.
After that speech, she said she wanted to do a second PET Scan (he'd had one done the week before which showed cancer in more lymph nodes in his shoulder and an area of concern on his left neck) to check for that trouble area again. She wanted 3 weeks between the scans, even after all she said about his high risk and aggressiveness of the mel.
I was not happy about this and questioned her on it, but she said she wanted to give Don's surgical site more of a chance to heal so it wouldn't give false positives on the PET. At that point, they were going to contact the hospital the did Don's lypmhectomy to get a sample to test for BRAF.
We waited the additional time (3 weeks between scans) and had his PET redone on th 29th. Dr. I had told us that if further hot spots turned up on the new PET, he would need CT and/or MRI to confirm. So, not wanting to wait a week until the 6th to get our answers, I called Dr. I that Monday afternoon. I wanted to know whether he was going to need the additional scans, because we didn't want to wait until the 6th to find out and have to wait even LONGER for more tests. If he needed them, we wanted to get them scheduled right away. Dr. Ibrahim said that no further testing was needed at that time. This, of course, gave us the impression that the PET came back with good results.
Yet, when we got to the appointment on the 6th, she tells us that the cancer had spread to several areas away from the original site and he was going to need more tests (CT and MRI). This was the EXACT reason I had called her on Monday! I was bullshit! Granted, they got him in that same day to get both tests done, but we could have had these tests done and she could have had THOSE results that Friday as well, you know?
Then they tell me that the BRAF testing wasn't complete yet because our hospital hadn't yet sent the specimen. I was on the phone with the doctor that Monday…why the heck didn't she mention it then when I could have taken care of it? Or called after the first week and they hadn't got it sent yet for that matter? I literally got on the phone with the lab at the hospital while we were IN HER WAITING ROOM and arranged to have the specimen overnighted to DF.
Dr. Ibrahim said she was surprised at the amount of change in Don's results in only 3 weeks (new scan showed bone lesions scattered on both hips, left leg bone, left arm bone, one left rib and both bones in the sternum, as well as tumors in both liver lobes), yet when I asked her if it was unusual she said no. I don't feel like we are getting straight answers from her. This is one area where I'm hoping some of you could give me feedback. That amount of change seemed to confirm the Dr's thought that this mel could be an aggressive one. Yet, I'm not seeing any sense of urgency in dealing with Don's case.
I called Dr. I's line on Monday, because I wanted the results of the MRI/CT scans. Her fellow called back and said they don't like to give out results over the phone because they'd prefer to do it in person in case it's bad news. I told him I didn't care if it was bad news so much as it would affect course of treatment right away: reason being that if he had brain mets, he wouldn't qualify for the trials and they could just start Yervoy right away. Reluctantly, he told me that the MRI was clean. I asked him if the tissue had arrived from our old hospital. He said he wasn't sure. I asked him to call me right away if it wasn't there yet, because it had been promised to arrive on Saturday.
I was told that I would get a call from radiology on Monday for Don to be scheduled for a liver biopsy to confirm the Stage IV diagnosis. No one called, so I had to call Monday afternoon to follow up (their biopsy procedures appear to be done at Brigham and Women's Hospital next door) and get it scheduled. That department hadn't even gotten the paperwork from the doctors for the procedure yet, which was why they hadn't called. I got him in for Wednesday (2 days ago).
When we got there for the biopsy, we were told they were taking several samples, one of which was to test for the BRAF mutation. Is it standard that they would test every tumor for the same mutation? Or is something fishy here? I mean, if the tissue sample they received was not viable for the test, I would have liked to have been informed of that, yet, they told us nothing.
Now, of course, I would like to be informed of the test results as soon as they get them, but that appears to not be this doctor's policy. Don's next appointment is the 20th, which is 3 weeks from the date of his last PET scan. If his mel spread as much as it did in the prior 3 weeks, I can only imagine what is happening in this additional 3 weeks. (It would not at all surprise me to learn that the cancer has spread to his lungs, for example) But I still don't feel as if there is any sense of urgency attached to his case.
I placed a call to the call line yesterday morning and asked to be called back because I had questions: we wanted to know why they needed the additional BRAF test done as well as find out how soon Don might be able to start treatment after his appointment on the 20th. It will be 7 weeks since the surgery by that time…7 weeks of absolutely no treatment with the melanoma running wild in Don's system.
When I didn't get a call back by 3:30pm, I called again. The nurse taking the message said she'd try to get someone to call back that day, but usually calls that came in that late wouldn't be answered until the next day.
Am I being unreasonable to expect to hear results as soon as the are available so they can be acted upon more swiftly? I don't feel like Don and I are being treated as partners in his health plans. I wish that they could have given him advice on excercise and diet and anything at all that he could be doing in the interim to try to get his body's immune system to try to fight off the cancer better while we were waiting for treatment. I realize Don is not their only patient, but I am not okay with the apparent lack of urgency.
Please let me know if you think I have unreasonable expectations and if not, can anyone give me feedback on Dr. Hodi from DF? I know at least a couple of boardies have him as their doctor, and I'd like to know if his approach would more mesh with ours. Thanks!
Michelle, wife of Don, Stage IV
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- May 13, 2011 at 12:30 pm
Michelle. Wow, that’s a lot to go thru while also waiting for a treatment plan! My husband has Dr Hodi at Dana Farber so please email me at [email protected] and I can give you my feedback on our experience! As I have indicated to you he has very good support staff, who get back to me quickly. Lets discuss, Valerie (Phil’s wife)-
- May 13, 2011 at 12:54 pm
Michelle,
The dr Don's seeing may work for some people, she's obviously not the dr for the two of you. You've got great reports on this other dr…what are you waiting for? It's obvious from what you write what your gut's screaming at you. Listen to it. Transfer. Today.
Lord, in Your mercy, open this door for Don and Michelle please. Amen.
Grace and peace,
Carol
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- May 13, 2011 at 12:54 pm
Michelle,
The dr Don's seeing may work for some people, she's obviously not the dr for the two of you. You've got great reports on this other dr…what are you waiting for? It's obvious from what you write what your gut's screaming at you. Listen to it. Transfer. Today.
Lord, in Your mercy, open this door for Don and Michelle please. Amen.
Grace and peace,
Carol
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- May 13, 2011 at 12:30 pm
Michelle. Wow, that’s a lot to go thru while also waiting for a treatment plan! My husband has Dr Hodi at Dana Farber so please email me at [email protected] and I can give you my feedback on our experience! As I have indicated to you he has very good support staff, who get back to me quickly. Lets discuss, Valerie (Phil’s wife) -
- May 13, 2011 at 1:43 pm
I often wonder if some doctors get caught of in the idea of their jobs just being jobs….punching in the time clock. If they don't get to something today….set it on the pile and maybe they'll see it tomorrow. No doctor should ever think this way. I think you do need to switch. Even if who ever you are seeing is a "good" doctor. You need someone who makes you feel better than what this doc is doing. Half the battle is mental. If you are up for the confrontation….after switching call that doctor get them on the phone and tell them what they did wrong. Not to be mean, but to inform them that being a doctor is more than what they have been offering.
The first derm that I saw that gave me my diagnoisis also gave me his personal cell phone and told me to call anytime-day or night with any questions. He also said to use that # to follow up and keep him imformed of how I was doing. He really could just go look in the computer and find out, but I felt that he was wanting to know much more than the physical report.
When we are dealing with cancer….really any cancer or life threatening anything we need people in our corner. We need to know that they are on our side and more importantly feel it. If you are not feeling it….run.
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- May 13, 2011 at 1:43 pm
I often wonder if some doctors get caught of in the idea of their jobs just being jobs….punching in the time clock. If they don't get to something today….set it on the pile and maybe they'll see it tomorrow. No doctor should ever think this way. I think you do need to switch. Even if who ever you are seeing is a "good" doctor. You need someone who makes you feel better than what this doc is doing. Half the battle is mental. If you are up for the confrontation….after switching call that doctor get them on the phone and tell them what they did wrong. Not to be mean, but to inform them that being a doctor is more than what they have been offering.
The first derm that I saw that gave me my diagnoisis also gave me his personal cell phone and told me to call anytime-day or night with any questions. He also said to use that # to follow up and keep him imformed of how I was doing. He really could just go look in the computer and find out, but I felt that he was wanting to know much more than the physical report.
When we are dealing with cancer….really any cancer or life threatening anything we need people in our corner. We need to know that they are on our side and more importantly feel it. If you are not feeling it….run.
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- May 13, 2011 at 2:34 pm
Michelle,
Switch. Don’t worry about being reasonable. I’m very surprised to hear about these delays from a melanoma specialist. My husband’s GP and local general oncologist showed much more urgency, the oncologist ordered the Braf testing immediately and started my husband on treatments (chemo and radiation) while he was setting up the appointment with the melanoma specialist. We met with the melanoma specialist on a Friday and my husband was admitted for an aggressive treatment on Monday.Best Wishes,
Jule -
- May 13, 2011 at 2:34 pm
Michelle,
Switch. Don’t worry about being reasonable. I’m very surprised to hear about these delays from a melanoma specialist. My husband’s GP and local general oncologist showed much more urgency, the oncologist ordered the Braf testing immediately and started my husband on treatments (chemo and radiation) while he was setting up the appointment with the melanoma specialist. We met with the melanoma specialist on a Friday and my husband was admitted for an aggressive treatment on Monday.Best Wishes,
Jule -
- May 13, 2011 at 2:59 pm
You might be being unreasonable in all your expectations, but that doesn't really matter at this point. When you start being dissatisfied, even the small things become big issues. The most important thing is to be comfortable with your team. If you're not, look elsewhere. No doc is perfect and what works for one patient doesn't work for another. But, if your husband (the patient) doesn't like his care with his current doctor, it's time to move on.
Best wishes,
Janner
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- May 13, 2011 at 2:59 pm
You might be being unreasonable in all your expectations, but that doesn't really matter at this point. When you start being dissatisfied, even the small things become big issues. The most important thing is to be comfortable with your team. If you're not, look elsewhere. No doc is perfect and what works for one patient doesn't work for another. But, if your husband (the patient) doesn't like his care with his current doctor, it's time to move on.
Best wishes,
Janner
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- May 13, 2011 at 3:40 pm
I have had time when things have gone unbearably slow, and other times when they've jumped quickly. Have they mentioned going to a tumor board to discuss your husbands case? Sometimes that will take an extra week but well worth it, then you get a teams thoughts on how to progress instead of just your Dr. For example: My PET was Tuesday, Wed I found out there was an issue of a recurrance, tomorrow I am having an MRI and Monday the tumor board is meeting. I will know the next suggested step Monday evening when the Dr calls.
My Dr does not like to give results on the phone but he will. There are Doctors who refuse to discuss any scan results on the phone. There was a discussion about that on the board a few years ago. For some desperation can take place when they get bad news, if in the Doctors office plans can be made. Your Dr. does not know Don well yet and doesn't know his reactions. I used to only want news on the phone, now that I've been having multiple recurrances I feel better having the Dr. ready and available in person to outline the next step.
As far as testing different tumors for B-raf. We have had people say that some of their tumors respond to the b-raf drugs and some don't. At that point it was discovered that their tumors did not have the same mutation and that's why those tumors were not responding. Actually your Dr while being slow might be proactive.
Oncologists get hired and fired everyday. Do what makes your husband feel most comfortable. Have you come out and actually expressed to the staff or Dr that your unhappy with the speed of how their reacting? If things are moving this rapidly I would let them know that their lack of speed was causing more stress and you want an explaination. A simple conversation can work if it's just a lack of communication.
Let us know how it goes,
Linda
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- May 13, 2011 at 3:40 pm
I have had time when things have gone unbearably slow, and other times when they've jumped quickly. Have they mentioned going to a tumor board to discuss your husbands case? Sometimes that will take an extra week but well worth it, then you get a teams thoughts on how to progress instead of just your Dr. For example: My PET was Tuesday, Wed I found out there was an issue of a recurrance, tomorrow I am having an MRI and Monday the tumor board is meeting. I will know the next suggested step Monday evening when the Dr calls.
My Dr does not like to give results on the phone but he will. There are Doctors who refuse to discuss any scan results on the phone. There was a discussion about that on the board a few years ago. For some desperation can take place when they get bad news, if in the Doctors office plans can be made. Your Dr. does not know Don well yet and doesn't know his reactions. I used to only want news on the phone, now that I've been having multiple recurrances I feel better having the Dr. ready and available in person to outline the next step.
As far as testing different tumors for B-raf. We have had people say that some of their tumors respond to the b-raf drugs and some don't. At that point it was discovered that their tumors did not have the same mutation and that's why those tumors were not responding. Actually your Dr while being slow might be proactive.
Oncologists get hired and fired everyday. Do what makes your husband feel most comfortable. Have you come out and actually expressed to the staff or Dr that your unhappy with the speed of how their reacting? If things are moving this rapidly I would let them know that their lack of speed was causing more stress and you want an explaination. A simple conversation can work if it's just a lack of communication.
Let us know how it goes,
Linda
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- May 14, 2011 at 12:18 am
The Mel Dept at DFCI saved me – literally. They are my home team.
That said very early on I wasn't getting much respect from my derm that was on my case – yet others raved about him – so I 'fired him' – requested through my Onc another one – who I mesh with very well. Dr I is relatively new to Dana Farber and the Mel Center. Dr. Hodi is the head of the Mel Center and has been at DF for many years, with a number of accolades to his credit from internal and outside sources. In late Jan of this year another well respected Mel Specialist (mine for 5 years) left DF for a position in NY. I am sure they are still recovering case load wise from the loss of that team member as they adjust.
If you haven't done the following I might suggest you do so:
1) Keep your correspondence with Dr I in writing – most of my docs at DF accept email. Keep it short, consise, with dates, and pertainent details. I've happily received responses late at night, from doctors, PA's, fellows, trial coordinators.
2) If you still do not get a satisfactory response in a timely fashion, escalate to Hodi ASAP – possibly her boss in this dept?
3) You can ALWAYS request a copy of scan results/report (no matter what hospital you end up being treated at) from Medical Records dept. I believe Dana Farber now accepts online requests and will either email or fax results to the patient (I used to have to go in person). I have done this FREQUENTLY to get results in advance of my appointments. Here's the link to the website for Medical Records requests:
http://www.dana-farber.org/Adult-Care/New-Patient-Guide/Patient-Rights/Medical-Records.aspx
4) Tell Dr. I that you want to know results via phone, email, or their 'patientgateway' online program (free to sign up) – whatever is going to get results to you the FASTEST.
5) I also got the speech early on in my dealings with Oncs in Boston that they want to meet to discuss face to face, in case it was bad news, so I said this,
"Great. I work in a world where email, social networking, and telephone conference calls run my every day. But to get my life and death results I need to drive 50 miles into Boston traffic, pay for parking, wait in the waiting room and again in the exam room, get the results, and the either good or bad fight rush hour traffic home? No thanks, I'd rather cry in the privacy of my home or office, rather than in a car, trying to drive in rush hour traffic…"
My Onc got the hint. Plus I showed up at a couple of appts with the results in hand already (thank you medical recoreds) and fired off questions based on the report..
I truly wish the best for your husband's treatment no matter where he ends up being treated.
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- May 14, 2011 at 12:18 am
The Mel Dept at DFCI saved me – literally. They are my home team.
That said very early on I wasn't getting much respect from my derm that was on my case – yet others raved about him – so I 'fired him' – requested through my Onc another one – who I mesh with very well. Dr I is relatively new to Dana Farber and the Mel Center. Dr. Hodi is the head of the Mel Center and has been at DF for many years, with a number of accolades to his credit from internal and outside sources. In late Jan of this year another well respected Mel Specialist (mine for 5 years) left DF for a position in NY. I am sure they are still recovering case load wise from the loss of that team member as they adjust.
If you haven't done the following I might suggest you do so:
1) Keep your correspondence with Dr I in writing – most of my docs at DF accept email. Keep it short, consise, with dates, and pertainent details. I've happily received responses late at night, from doctors, PA's, fellows, trial coordinators.
2) If you still do not get a satisfactory response in a timely fashion, escalate to Hodi ASAP – possibly her boss in this dept?
3) You can ALWAYS request a copy of scan results/report (no matter what hospital you end up being treated at) from Medical Records dept. I believe Dana Farber now accepts online requests and will either email or fax results to the patient (I used to have to go in person). I have done this FREQUENTLY to get results in advance of my appointments. Here's the link to the website for Medical Records requests:
http://www.dana-farber.org/Adult-Care/New-Patient-Guide/Patient-Rights/Medical-Records.aspx
4) Tell Dr. I that you want to know results via phone, email, or their 'patientgateway' online program (free to sign up) – whatever is going to get results to you the FASTEST.
5) I also got the speech early on in my dealings with Oncs in Boston that they want to meet to discuss face to face, in case it was bad news, so I said this,
"Great. I work in a world where email, social networking, and telephone conference calls run my every day. But to get my life and death results I need to drive 50 miles into Boston traffic, pay for parking, wait in the waiting room and again in the exam room, get the results, and the either good or bad fight rush hour traffic home? No thanks, I'd rather cry in the privacy of my home or office, rather than in a car, trying to drive in rush hour traffic…"
My Onc got the hint. Plus I showed up at a couple of appts with the results in hand already (thank you medical recoreds) and fired off questions based on the report..
I truly wish the best for your husband's treatment no matter where he ends up being treated.
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- May 16, 2011 at 1:46 pm
Rocco,
Thank you for your reply! Lots of helpful information here…we signed up for the Patient Gateway right away. Now I won't have to constantly pester the doctor for results (I can pester her to get stuff done *because* of the results…
).I think Don and I will have that same discussion with Dr. I that you outlined in bullet #5 when we see her tomorrow. Like you, we would rather be surrounded by family/friends and in a familiar environment when/if we have to deal with bad news, not have to drive an hour in to Boston to hear it and then drive home *after* hearing it!
We may still look in to moving to MGH Mel Center, or at least meeting with Dr. Lawrence, but for now we'll stay put and hope having a heart-toheart with our current doctor will improve things.
Michelle, wife of Don, Stage IV
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- May 16, 2011 at 1:46 pm
Rocco,
Thank you for your reply! Lots of helpful information here…we signed up for the Patient Gateway right away. Now I won't have to constantly pester the doctor for results (I can pester her to get stuff done *because* of the results…
).I think Don and I will have that same discussion with Dr. I that you outlined in bullet #5 when we see her tomorrow. Like you, we would rather be surrounded by family/friends and in a familiar environment when/if we have to deal with bad news, not have to drive an hour in to Boston to hear it and then drive home *after* hearing it!
We may still look in to moving to MGH Mel Center, or at least meeting with Dr. Lawrence, but for now we'll stay put and hope having a heart-toheart with our current doctor will improve things.
Michelle, wife of Don, Stage IV
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- May 14, 2011 at 1:57 am
Whew, what a saga. No you are not without reason, but, if I may suggest, take a pencil and paper and write down your top ten reasons for dissatisfaction and approach it with problem, need and solution.
Problem: Are scans needed or not? Need: The confusing and conflicting scan schedules are creating patient anxiety and personal scheduling issues. Solution: Clear direction on scan scheduling and a timeline for radiological results to be rendered.
Problem: There seems to be no clear direction forward for treatment decisions. Need: There is patient anxiety due to no clear treatment plan looking forward. Solution: We need a definitive treatment plan and time line to initiate that plan.
Problem: Incomplete or non-existent BRAF mutation test results are not in hand. Need: Without this clinical knowledge, the patient has no tools for informed medical decisions. Solution: We need the test results, and you doctor, must tell me whether you are either unwilling or unable to do so.
Getting the idea? I'm not going to defend doctors, but communication is important and the patient needs to be clear, concise, succinct in the problem, the need and the solution. Otherwise it is just bitching, and if the doctor does not know your expectations, there will be no solutions..
Sometimes doctors and patients just don't fit; other times, the doctors support staff may be asleep at the wheel and the doctor is unaware……………………so TELL them, but frame your thoughts in that, on average each patient has about 15 minutes face time at an appointment, so make your words count.
Regardless, it is important to develop solid communication skills and be prepared.
I have said more than once, NEVER go to a doctor , speak to a doctor or call a doctor of any kind about cancer without a written list of questions in hand and a second pair of ears and eyes.
Fire your doctor if you see fit and don't look back, but going forward, learn from what did not work and find a way to MAKE the next one more workable.
I hear your frustration loud and clear, but just remember, it is up to the patient to strike a workable chord with a doctor and if the chord is sour, move on, but keep looking for ways to orchestrate with the next one to more suit you.
You are the conductor of the choir and the bus. Drive or be driven.
Charlie S
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- May 16, 2011 at 1:04 pm
Charlie,
Thank you for such a wise response. I plan to do exactly this from now on. We're not sure whether we will be leaving this doctor/DF, but I think we will at least be looking around as he begins his trial.
Thanks again!
Michelle, wife of Don, Stage IV
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- May 16, 2011 at 1:04 pm
Charlie,
Thank you for such a wise response. I plan to do exactly this from now on. We're not sure whether we will be leaving this doctor/DF, but I think we will at least be looking around as he begins his trial.
Thanks again!
Michelle, wife of Don, Stage IV
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- May 14, 2011 at 1:57 am
Whew, what a saga. No you are not without reason, but, if I may suggest, take a pencil and paper and write down your top ten reasons for dissatisfaction and approach it with problem, need and solution.
Problem: Are scans needed or not? Need: The confusing and conflicting scan schedules are creating patient anxiety and personal scheduling issues. Solution: Clear direction on scan scheduling and a timeline for radiological results to be rendered.
Problem: There seems to be no clear direction forward for treatment decisions. Need: There is patient anxiety due to no clear treatment plan looking forward. Solution: We need a definitive treatment plan and time line to initiate that plan.
Problem: Incomplete or non-existent BRAF mutation test results are not in hand. Need: Without this clinical knowledge, the patient has no tools for informed medical decisions. Solution: We need the test results, and you doctor, must tell me whether you are either unwilling or unable to do so.
Getting the idea? I'm not going to defend doctors, but communication is important and the patient needs to be clear, concise, succinct in the problem, the need and the solution. Otherwise it is just bitching, and if the doctor does not know your expectations, there will be no solutions..
Sometimes doctors and patients just don't fit; other times, the doctors support staff may be asleep at the wheel and the doctor is unaware……………………so TELL them, but frame your thoughts in that, on average each patient has about 15 minutes face time at an appointment, so make your words count.
Regardless, it is important to develop solid communication skills and be prepared.
I have said more than once, NEVER go to a doctor , speak to a doctor or call a doctor of any kind about cancer without a written list of questions in hand and a second pair of ears and eyes.
Fire your doctor if you see fit and don't look back, but going forward, learn from what did not work and find a way to MAKE the next one more workable.
I hear your frustration loud and clear, but just remember, it is up to the patient to strike a workable chord with a doctor and if the chord is sour, move on, but keep looking for ways to orchestrate with the next one to more suit you.
You are the conductor of the choir and the bus. Drive or be driven.
Charlie S
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- May 14, 2011 at 3:07 am
Michelle,
I hope that you were able to resolve issues with dr. ibrahim. But, unfortunately, i believe that if you decide to stay with this "doctor" you will loose your husband very quickly. It happening to my brother-in-law as i wright this. She said "we lost him. there is no reason to complain now". But he is still alive!!!!!!
She is unorganized and panics when situation requires quick action. She does not listen to paitien complains and when situation gets out of control she makes an "angel" face and asks " did i miss something". Once melanoma get to the advanced stage, treatment was stoped. And now, 3 month later, when we know that so much was not done, we fill that it actually our failure that we trusted her and now we are loosing beloved person.
My sister tried to contact Dr. Hodi to get at least second opinion, but he refused to meet with her. And he was very rude and unpleasant and sugested that she should transfer her husband to other hospital. They treated him for more then a year and now just want to get him out of their hoispital. There is no other melanoma oncologist in Dana Farber. And there is simply no time to look for other hospital. And on top of this very rude and unprofessional medical pesonal.
Unfortunately, there is not much good that could be said about dr. Ibrahim and you probably still have time to find better oncology clinic.
Sorry, if i dissappointed you.
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- May 14, 2011 at 3:07 am
Michelle,
I hope that you were able to resolve issues with dr. ibrahim. But, unfortunately, i believe that if you decide to stay with this "doctor" you will loose your husband very quickly. It happening to my brother-in-law as i wright this. She said "we lost him. there is no reason to complain now". But he is still alive!!!!!!
She is unorganized and panics when situation requires quick action. She does not listen to paitien complains and when situation gets out of control she makes an "angel" face and asks " did i miss something". Once melanoma get to the advanced stage, treatment was stoped. And now, 3 month later, when we know that so much was not done, we fill that it actually our failure that we trusted her and now we are loosing beloved person.
My sister tried to contact Dr. Hodi to get at least second opinion, but he refused to meet with her. And he was very rude and unpleasant and sugested that she should transfer her husband to other hospital. They treated him for more then a year and now just want to get him out of their hoispital. There is no other melanoma oncologist in Dana Farber. And there is simply no time to look for other hospital. And on top of this very rude and unprofessional medical pesonal.
Unfortunately, there is not much good that could be said about dr. Ibrahim and you probably still have time to find better oncology clinic.
Sorry, if i dissappointed you.
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- May 14, 2011 at 6:13 pm
UPDATE:
At the urging of another person who sees the doctors there, it was recommended I write an email to the nurse and PA who work for the 2 doctors and include the frustrations I had outlined in this post. As forecasted, I received a response within about an hour.
She said she would have to look into Don's file because she wasn't involved with his initial consultation but that she certainly would be looking into it and speeding things up, if possible. I was also urged to try and speak directly with Dr. Ibrahim about the concerns I had.
I did place another call to her call line and this time I got a call back within an hour. The response was night and day to what I have dealt with thus far (which makes me think that she was either shown my email or talked to about it). I asked her about the situation with the second BRAF test and she said she ordered the second to test both. She said that the specimen they received from his initial tumor came in a big block of tissue and had to be ressected in a certain way before they could begin testing, so she thought since she was getting a sample anyway for the Stage IV staging verification, she would have them get a fresh sample that would be ressected the corthrect way from the start so they could get the process moving. Both are in process of being tested, she said.
She also apologized for no one getting back with me the day before; she had been out that day, and apparently the call desk was not aware of that when they sent my call to her voicemail.
I told her my concerns with the quick progression of Don's disease and wanted to know if they would definitely have the BRAF results by his appointment on the 20th. She said she wasn't sure, but that she would check with the path lab and call me back. I also mentioned a new symptom Don has had lately: sometimes he coughs when he talks. Not when he takes a deep breath of anything like that, but just when he talks, and only sometimes.
About an hour went by and I did receive a return call from Dr. Ibrahim. She could not guarantee that the results would be back in time and, in the interest of getting Don treatment sooner rather than later and get his disease stabilized, wants to push his appointment up to Tuesday and get him signed up for one of the two trials not having to do with the BRAF, with the understanding that if the BRAF tests come back positive, Don could pull his consent to the current trial and enroll in the BRAF trial.
I am to call Monday morning to schedule his appointment for Tuesday morning. She also reminded me about her pager line so if Don has any serious changes to his condition, I should use that so she gets the message right away and if she's not in, the doctor on call would contact us.
In other words, suddenly there is urgency in Don's case.
There has been lots of great advice given in this thread and I am supremely grateful for all of it. I am not sure if this situation will be an inroads to better communication with this doctor or if we will eventually switch, but at least now something is happening soon.
Thanks again to you all!
Michelle, wife of Don, Stage IV
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- May 14, 2011 at 6:13 pm
UPDATE:
At the urging of another person who sees the doctors there, it was recommended I write an email to the nurse and PA who work for the 2 doctors and include the frustrations I had outlined in this post. As forecasted, I received a response within about an hour.
She said she would have to look into Don's file because she wasn't involved with his initial consultation but that she certainly would be looking into it and speeding things up, if possible. I was also urged to try and speak directly with Dr. Ibrahim about the concerns I had.
I did place another call to her call line and this time I got a call back within an hour. The response was night and day to what I have dealt with thus far (which makes me think that she was either shown my email or talked to about it). I asked her about the situation with the second BRAF test and she said she ordered the second to test both. She said that the specimen they received from his initial tumor came in a big block of tissue and had to be ressected in a certain way before they could begin testing, so she thought since she was getting a sample anyway for the Stage IV staging verification, she would have them get a fresh sample that would be ressected the corthrect way from the start so they could get the process moving. Both are in process of being tested, she said.
She also apologized for no one getting back with me the day before; she had been out that day, and apparently the call desk was not aware of that when they sent my call to her voicemail.
I told her my concerns with the quick progression of Don's disease and wanted to know if they would definitely have the BRAF results by his appointment on the 20th. She said she wasn't sure, but that she would check with the path lab and call me back. I also mentioned a new symptom Don has had lately: sometimes he coughs when he talks. Not when he takes a deep breath of anything like that, but just when he talks, and only sometimes.
About an hour went by and I did receive a return call from Dr. Ibrahim. She could not guarantee that the results would be back in time and, in the interest of getting Don treatment sooner rather than later and get his disease stabilized, wants to push his appointment up to Tuesday and get him signed up for one of the two trials not having to do with the BRAF, with the understanding that if the BRAF tests come back positive, Don could pull his consent to the current trial and enroll in the BRAF trial.
I am to call Monday morning to schedule his appointment for Tuesday morning. She also reminded me about her pager line so if Don has any serious changes to his condition, I should use that so she gets the message right away and if she's not in, the doctor on call would contact us.
In other words, suddenly there is urgency in Don's case.
There has been lots of great advice given in this thread and I am supremely grateful for all of it. I am not sure if this situation will be an inroads to better communication with this doctor or if we will eventually switch, but at least now something is happening soon.
Thanks again to you all!
Michelle, wife of Don, Stage IV
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- May 14, 2011 at 10:28 pm
It is all familiar situation with Ibrahim She gets alert and responsive once she gets pushed a little. Two weeks ago we placed complain with patient rep's about dr. Ibrahim questionable performance and not respondng to paitient condition and failing to schedule a simple follow-up appointment. Paitient rep said that just today Ibrahim called them and warned them that we would call with complaint. And, miracle, next day she, by herself, came to the hospital room where my brother-in-law was already for almost a week already. More, she came with a tem of doctors and there was a great progress made in planning future treatment. And here we are right now, one week later, she does not return phone calls and even scheduled unnecessary Cat-scan an MRI (tsame tests were done 2 weeks ago) at the same time when radiation was scheduled. When question come up about those tests, she simply cancels those without any explanation. Even nurse was surprised and had no idea what is going on.
About trials at DF. They have few of them that are sutable for melanoma. The problem is, those are trials that they want to push thru. As a metter of fact one of them Ipilimumab + Bevacizumab is in Phase I for quite a while now. Medication is very toxic and they can not stabilize proportion of medications. Ipilimumab ( Yarvoy) is very toxic by itself. ( survaival rate about 20%) Looks like person will get more sicker from it, then from melanoma itself. According to toxicologist, side effects may appear even few month after the trial.
One more thing about trials, that we found the hard way. Dana Farber ( as any other clinic) will push for trials that available at they hospital. It is all about money and having another " trial rabbit" for their medication. Very often, once trial has started other trials automaticly became not available for patient, since those trials require no prior treatment. We made a huge misteke when agreed to DF trial without prior research. Ibrahim pished hard and since there were other health problems, trial was on in no time. We just found out, that at the same time other hospitals around country were reqruting patients without prior treatment for trial PLX 4032 (Plexikkon) that in fact has 80% survival. It is for BRAF mutation, perfect much for my brother-in-law. Trial is over now and Plexikkon filled for FDA approval on May 12. They still offer extended acces for trial for the same medication. Trial ML25597 for RG7204 (PLX 4032).
When in January question we asked about Plexikkon's trial Ibraim said that closest city where it was offered is Detroit, but it is too far and she does not recommend to go there, since Plexikkon will be available at DF in 4 weeks. After 4 weeks pasts, there were another 4 weeks, and another 4 weeks. Lies, lies, lies……
I called Plexikkon and found out that they d offer this extended acces trial in Philadelphia, which is much closer then Detroit. Coordinator at Philadelphia was very helpfull and paperwork was started in no time. BUT,…. it is too late.
You can check all trials at cancer.gov. Do not hesitate to cal them also.
Best wishes.
Julia
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- May 16, 2011 at 2:00 pm
Julia,
After reading your posts, I did indeed look into all the current trials available in the Boston area to make sure they didn't "forget" to mention one to me. There was only one other one (OncoVex vs GM-CSF), but my husband wouldn't qualify because of his bone mets, which I would assume would be why we didn't hear about it.
Most likely, he will be joining the ipi vs. ipi/GM-CSF trial…however, she did tell us that if his BRAF results came back positive, we could switch to the BRAF/MEK trial. I plan on doing some research to make sure that is true before signing on the dotted line, of course.
I plan on giving Dr. I a *big* piece of my mind tomorrow when we see her, and will be looking into the possibility of moving Don to MGH Mel Center as well.
But first and foremost to my mind is to get him some treatment of some kind so we can hopefully stabilize his tumor burden.
I think I will also call Cancer.gov today as you suggested, just to make sure there aren't other treatments available that might be better suited to him.
Thanks for letting me know of your experience with Dr. I. I am truly sorry for you and your loved one, and I will pray for a miracle for him.
Michelle, wife of Don, Stage IV
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- May 16, 2011 at 2:00 pm
Julia,
After reading your posts, I did indeed look into all the current trials available in the Boston area to make sure they didn't "forget" to mention one to me. There was only one other one (OncoVex vs GM-CSF), but my husband wouldn't qualify because of his bone mets, which I would assume would be why we didn't hear about it.
Most likely, he will be joining the ipi vs. ipi/GM-CSF trial…however, she did tell us that if his BRAF results came back positive, we could switch to the BRAF/MEK trial. I plan on doing some research to make sure that is true before signing on the dotted line, of course.
I plan on giving Dr. I a *big* piece of my mind tomorrow when we see her, and will be looking into the possibility of moving Don to MGH Mel Center as well.
But first and foremost to my mind is to get him some treatment of some kind so we can hopefully stabilize his tumor burden.
I think I will also call Cancer.gov today as you suggested, just to make sure there aren't other treatments available that might be better suited to him.
Thanks for letting me know of your experience with Dr. I. I am truly sorry for you and your loved one, and I will pray for a miracle for him.
Michelle, wife of Don, Stage IV
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- May 14, 2011 at 10:28 pm
It is all familiar situation with Ibrahim She gets alert and responsive once she gets pushed a little. Two weeks ago we placed complain with patient rep's about dr. Ibrahim questionable performance and not respondng to paitient condition and failing to schedule a simple follow-up appointment. Paitient rep said that just today Ibrahim called them and warned them that we would call with complaint. And, miracle, next day she, by herself, came to the hospital room where my brother-in-law was already for almost a week already. More, she came with a tem of doctors and there was a great progress made in planning future treatment. And here we are right now, one week later, she does not return phone calls and even scheduled unnecessary Cat-scan an MRI (tsame tests were done 2 weeks ago) at the same time when radiation was scheduled. When question come up about those tests, she simply cancels those without any explanation. Even nurse was surprised and had no idea what is going on.
About trials at DF. They have few of them that are sutable for melanoma. The problem is, those are trials that they want to push thru. As a metter of fact one of them Ipilimumab + Bevacizumab is in Phase I for quite a while now. Medication is very toxic and they can not stabilize proportion of medications. Ipilimumab ( Yarvoy) is very toxic by itself. ( survaival rate about 20%) Looks like person will get more sicker from it, then from melanoma itself. According to toxicologist, side effects may appear even few month after the trial.
One more thing about trials, that we found the hard way. Dana Farber ( as any other clinic) will push for trials that available at they hospital. It is all about money and having another " trial rabbit" for their medication. Very often, once trial has started other trials automaticly became not available for patient, since those trials require no prior treatment. We made a huge misteke when agreed to DF trial without prior research. Ibrahim pished hard and since there were other health problems, trial was on in no time. We just found out, that at the same time other hospitals around country were reqruting patients without prior treatment for trial PLX 4032 (Plexikkon) that in fact has 80% survival. It is for BRAF mutation, perfect much for my brother-in-law. Trial is over now and Plexikkon filled for FDA approval on May 12. They still offer extended acces for trial for the same medication. Trial ML25597 for RG7204 (PLX 4032).
When in January question we asked about Plexikkon's trial Ibraim said that closest city where it was offered is Detroit, but it is too far and she does not recommend to go there, since Plexikkon will be available at DF in 4 weeks. After 4 weeks pasts, there were another 4 weeks, and another 4 weeks. Lies, lies, lies……
I called Plexikkon and found out that they d offer this extended acces trial in Philadelphia, which is much closer then Detroit. Coordinator at Philadelphia was very helpfull and paperwork was started in no time. BUT,…. it is too late.
You can check all trials at cancer.gov. Do not hesitate to cal them also.
Best wishes.
Julia
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- May 16, 2011 at 2:25 am
Good. Now please understand that their are people on staff who are paid to "dazzle you with bullshit" upon receiving an e-mail from the likes of you, so take them to task.
I do hope you are keeping a diary, so that every time somebody tells you something with a timeline, you have a response if they do not do so.
Also, when there is a "I don't know" response, the followup for you is "when will you know?"…where upon you will have a automatic response time..
It is great you have turned some wheels. but you MUST not back off. Each time you were given a proposed response, ask for the response.
Each time your appointment is changed, get it in writing.
If, in the future, something is different from your written response,point it out. If something is different from what you understood from your phone calls(backed up by your notes), then point it out.
Great that you had a breakthrough in communication, but you MUST be sure and follow through on each point, because they may not; and it will give you the upper hand when you take them to task.
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- May 16, 2011 at 9:36 pm
Charlie, are you a lawyer? This is the kind of logical, aggressive thinking we use in law offices. (I am not a lawyer, just a legal assistant).
Never be afraid to be organized, aggressive and persistent. Get an answer to every question you have. If you don't fight for your case, who will?
BTW, we have no excuse to be a jack*ss when we do this. Remember, we catch more flies with honey…….
Nicki, Stage 3b, scalp
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- May 16, 2011 at 9:36 pm
Charlie, are you a lawyer? This is the kind of logical, aggressive thinking we use in law offices. (I am not a lawyer, just a legal assistant).
Never be afraid to be organized, aggressive and persistent. Get an answer to every question you have. If you don't fight for your case, who will?
BTW, we have no excuse to be a jack*ss when we do this. Remember, we catch more flies with honey…….
Nicki, Stage 3b, scalp
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- May 16, 2011 at 2:25 am
Good. Now please understand that their are people on staff who are paid to "dazzle you with bullshit" upon receiving an e-mail from the likes of you, so take them to task.
I do hope you are keeping a diary, so that every time somebody tells you something with a timeline, you have a response if they do not do so.
Also, when there is a "I don't know" response, the followup for you is "when will you know?"…where upon you will have a automatic response time..
It is great you have turned some wheels. but you MUST not back off. Each time you were given a proposed response, ask for the response.
Each time your appointment is changed, get it in writing.
If, in the future, something is different from your written response,point it out. If something is different from what you understood from your phone calls(backed up by your notes), then point it out.
Great that you had a breakthrough in communication, but you MUST be sure and follow through on each point, because they may not; and it will give you the upper hand when you take them to task.
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- May 14, 2011 at 11:53 pm
Hi,
I did my original consult with Dr Hodi and Dr Lawrence (Mass General) both melanoma specialists. After talking to both doctors my husband and I chose to go with Dr LAwrence. We found that Dr Lawrence seemed to be more connected with us as people and patiently took his time with us as we absorbed it all. Dr Hodi was more matter of fact.
I am only stage 3, I realize there is a big difference in how quickly you need things to move once you enter stage 4 and especially with an agressive form. My original scans had been done before I saw either doctor so do not know how quickly they would have had them done and read. We found that Dr LAwrence and his staff moved things along quickly for us from there. I had surgery, radiation and interferon. (I will also have to say that Dr Lawrence allowed me the choice to have my radiation and interferon administered by a doctor outside of boston so I would not have to drive in and out of Boston for that)..
I hope you find the solution that works best for you.
laurie from maine
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- May 14, 2011 at 11:53 pm
Hi,
I did my original consult with Dr Hodi and Dr Lawrence (Mass General) both melanoma specialists. After talking to both doctors my husband and I chose to go with Dr LAwrence. We found that Dr Lawrence seemed to be more connected with us as people and patiently took his time with us as we absorbed it all. Dr Hodi was more matter of fact.
I am only stage 3, I realize there is a big difference in how quickly you need things to move once you enter stage 4 and especially with an agressive form. My original scans had been done before I saw either doctor so do not know how quickly they would have had them done and read. We found that Dr LAwrence and his staff moved things along quickly for us from there. I had surgery, radiation and interferon. (I will also have to say that Dr Lawrence allowed me the choice to have my radiation and interferon administered by a doctor outside of boston so I would not have to drive in and out of Boston for that)..
I hope you find the solution that works best for you.
laurie from maine
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- May 16, 2011 at 5:24 am
Michelle,
I've just read through all of this thread… It breaks my heat to think you are wasting you precious time and energy trying to hold you oncologist accountable… she is consistently unreliable. DF is going through too many changes right now to offer the quality of care that you should always receive!! without a fight!! I am a nurse and my husband is stage 3 going through Interferon. Keep you current appointments but have his records sent to another hospital and set up a second opinion. There has got to be someone at the Brigham, NEMCH, etc. Start a new thread asking for a melanoma specialist in Boston. Dr I is going to let you down again. The care you are receiving is criminal and you deserve the best.
Kelly
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- May 16, 2011 at 5:24 am
Michelle,
I've just read through all of this thread… It breaks my heat to think you are wasting you precious time and energy trying to hold you oncologist accountable… she is consistently unreliable. DF is going through too many changes right now to offer the quality of care that you should always receive!! without a fight!! I am a nurse and my husband is stage 3 going through Interferon. Keep you current appointments but have his records sent to another hospital and set up a second opinion. There has got to be someone at the Brigham, NEMCH, etc. Start a new thread asking for a melanoma specialist in Boston. Dr I is going to let you down again. The care you are receiving is criminal and you deserve the best.
Kelly
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- May 16, 2011 at 6:14 am
Thanks Kelly for your wise comments on this situation.
Everyone deserves the best possible health care in a relaxed and congenial atmosphere. Without
this, there can be so much needless stress that it can adversely affect the patient and their
caregiver. One has enough stress already when dealing with melanoma, so it is important to take
action in order to alleviate any source of unnecessary anxiety. If one isn't happy, then one
should take action. I feel that if this means changing oncologists and/or hospitals, then so be
it.Best wishes
Frank from Australia
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- May 16, 2011 at 6:14 am
Thanks Kelly for your wise comments on this situation.
Everyone deserves the best possible health care in a relaxed and congenial atmosphere. Without
this, there can be so much needless stress that it can adversely affect the patient and their
caregiver. One has enough stress already when dealing with melanoma, so it is important to take
action in order to alleviate any source of unnecessary anxiety. If one isn't happy, then one
should take action. I feel that if this means changing oncologists and/or hospitals, then so be
it.Best wishes
Frank from Australia
-
- May 16, 2011 at 2:05 pm
Kelly,
I have heard good things about Dr. Lawrence at MGH's Mel Center and plan to look into the possibility of having Don's case transferred there. We are going to keep his appointment for tomorrow and get him started on a trial (Dr. Lawrence runs this same trial at MGH anyway…) and then look into moving him.
Michelle, wife of Don, Stage IV
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- May 16, 2011 at 2:05 pm
Kelly,
I have heard good things about Dr. Lawrence at MGH's Mel Center and plan to look into the possibility of having Don's case transferred there. We are going to keep his appointment for tomorrow and get him started on a trial (Dr. Lawrence runs this same trial at MGH anyway…) and then look into moving him.
Michelle, wife of Don, Stage IV
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- May 16, 2011 at 10:45 pm
Make the call first before you sign on the dotted line I'm not so sure you can that easily change institions and still be on the same trial. They each have a quota of how many slots they have on a trial, therefore might not be as interchangeable as you think. If your on a trial and then get off, they might not let you back on the same trial.
Clinical trials have many rules. Many are very unbending.
Linda
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- May 16, 2011 at 10:45 pm
Make the call first before you sign on the dotted line I'm not so sure you can that easily change institions and still be on the same trial. They each have a quota of how many slots they have on a trial, therefore might not be as interchangeable as you think. If your on a trial and then get off, they might not let you back on the same trial.
Clinical trials have many rules. Many are very unbending.
Linda
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- May 16, 2011 at 5:34 am
Michelle
I just researched Dr Lawrence mentioned above. He practices with Dr Flaherty at Mass General who is supposed to be fabulous. I would recommend calling them. You don't have confidence in Dr I and that is a big part of the battle.
Good Luck Kelly
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- May 16, 2011 at 5:34 am
Michelle
I just researched Dr Lawrence mentioned above. He practices with Dr Flaherty at Mass General who is supposed to be fabulous. I would recommend calling them. You don't have confidence in Dr I and that is a big part of the battle.
Good Luck Kelly
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- May 16, 2011 at 3:12 pm
Michelle,
If you can get into MGH this week, I would be hesitant to sign a clinical trial consent with Dr I. Some clinical trial involvement can exclude you from other options. Take the paper work home and read it in depth before committing.
If the MGH receptionist can't get you in, ask to be connected to the nursing line. I would be surprised if they couldn't find an appt for you asap.
Keeping your family in my prayers
Kelly (I'm from Scituate… my husband is from Worcester but we live in Oregon now)
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- May 16, 2011 at 3:12 pm
Michelle,
If you can get into MGH this week, I would be hesitant to sign a clinical trial consent with Dr I. Some clinical trial involvement can exclude you from other options. Take the paper work home and read it in depth before committing.
If the MGH receptionist can't get you in, ask to be connected to the nursing line. I would be surprised if they couldn't find an appt for you asap.
Keeping your family in my prayers
Kelly (I'm from Scituate… my husband is from Worcester but we live in Oregon now)
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- June 25, 2011 at 10:36 am
Hi,
I would be glad if you could email me. I wanted to ask you something.
Also note that in some cases a more aggressive melanoma is more responsive to melanoma treatment.
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- June 25, 2011 at 10:36 am
Hi,
I would be glad if you could email me. I wanted to ask you something.
Also note that in some cases a more aggressive melanoma is more responsive to melanoma treatment.
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