› Forums › General Melanoma Community › Questions…..feeling lied to
- This topic has 15 replies, 5 voices, and was last updated 5 years, 9 months ago by
Dwarla.
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- June 30, 2018 at 5:56 pm
Hello everyone, I had to stop ipi/nivo combo after 2 treatments because my oncologist said I was allergic to ipi. I believe that. I had a treatment of just nivo last Monday, the 25th. They wanted to check me, so I went back the 28th. In the meantime they had scheduled me for treatment for 2 weeks. Then called me and said it should have been 3 weeks and rescheduled me. I asked the NP on the 28th if that was correct and had they adjusted my dosage. First she said it should be every 2 weeks then she told me that the FDA had approved a 3 week dosage. I'm dosed at 1mg/kg. I have searched and cannot find any 3 week dosage unless it is in combo with ipi. Does anyone know what is correct? What should I do? I am supposed to go July 2nd and talk to the oncologist about changing my medicine. She thinks I was on Opdivo before these lymph nodes showed up but I was on Keytruda for around a year. Once they determined that the lymph nodes were melanoma (they had also doubled and redoubled in size) they started the ipi/nivo combo treatments. Should I stay on Opdivo? Should I look for a new oncologist? I need advice, please! Thank you!
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- June 30, 2018 at 6:01 pm
The combination immunotherapy protocol is:
Ipi/Nivo combo every 3 weeks for 4 doses (or fewer doses if adverse side effects warrent stopping)
Then Nivo alone, either 240mg every two weeks, or 480mg every 4 weeks (the 4 week regimen was just approved in the last few months).
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- June 30, 2018 at 6:29 pm
Just as doragsda said, straight forward. (Unless in a study that changes dosages up a bit: nivo as above, for example, but a lower dose of ipi (1 mg/kg) every 6 weeks for 9 doses.) When giving nivo alone, my husband’s treatment center offers 480 mg every 4 weeks unless a patient wants to stay on 240 every other week.
You have to feel comfortable and trust your doctor – and treatment team. Is it worth speaking to her first since the appointment is only two days away, to see if the conversation will clear up muddy areas and make you feel better? Even if you decide to look for another melanoma specialist – or get a second opinion. it would seem that appointment would be worth keeping.
Quite a number of people have severe side effects to ipi and can’t tolerate it. Did you have side effects or an actual allergic reaction?
Good luck, no fun. I think of how much more difficult this uninvited journey would be if we didn’t think highly of the team at our treatment center.
Beth
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- June 30, 2018 at 7:20 pm
The oncologist said that I had an allergic reaction to the ipi. My face, lips, and tongue swelled very badly. I have swelled really big twice. I went to the ER the first time and got benedryl through IV. I have done 1 round of steroids and been on benedryl around the clock for 7 weeks and I'm still fighting swelling. They have added it to my list of drug allergies. I just feel like they should know what's going on with me and not tell me things that aren't true. My life is in their hands. I plan to keep the appointment on Monday but I intend to ask questions. I've been with them for a year and a half. Thank you so much!
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- June 30, 2018 at 8:15 pm
Wow, your reaction has been no picnic, I’m sorry! Let us know how it goes after your appointment.
You’re in Virginia and there are some good specialists in NoVa, MD and DC, but you may be a bit far away. We’re in NoVA, really pleased with a melanoma center here, in case you ever need a second opinion. Just PM me. And others have been pleased with docs elsewhere in the MD-DC-VA area.
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- July 1, 2018 at 3:29 am
Hi Dwarla,
Sorry about what you are going through. I thought I should chip in because bjeans mentioned NoVA (I think INOVA Fairfax) so thought I should mention Georgetown and Washington Hospital Centre in DC as options, both have melanoma specialists (and I am a DC partisan 🙂 and kind of happy with the treatment i have received or the expertise of my doctors they are knowledgeable).
I am not qualified to give medical advice but one other things that worries me apart from the three week dosing being incorrect (that is correct for keytruda which you were on before but nivo is either every two weeks or, recently approved, four weeks) is I am not sure nivo alone is a great idea if you progressed (hope not too much) under keytruda. Because from these boards my understanding is that nivo and keytruda are pretty similar. Going from keytruda to ipi/nivo could make sense because the combo is supposed to be better but there is the risk of ipi side effects. If you are allergic to ipi then nivo alone would seem to be similar to keytruda alone (maybe they intend to put you back on this).
For these reasons it might be better to seek a melanoma specialist (in DC or INOVA but I am DC biased!) to see if they have additional options like intralesionals or clinical trials rather than just sticking to nivo or keytruda. I am on keytruda plus intralesional (I started with just keytruda) and if this does not work then my doctors are thinking surgery (still possible in my case) or clinical trials (last week my doctor mentioned a trial that he thinks looks promising).
I know its a long drive from Blacksburg but I think its going to be worth it, since its not good that your doctor is not sure what med you were taking before (ie keytruda not nivo) and that I think its a good time to be looking at new options and a melanoma specialist can do this.
Good luck, Mark
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- July 1, 2018 at 1:27 pm
I hadn’t mentioned which center, but Mark is right, it’s the Inova Melanoma and Skin Cancer Center. The director (Venna) was with WHC, has an excellent reputation, and left WHC with one of his oncologists to create the Inova center as part of the Schar Cancer Institute, partly due to an emphasis on building a research center. Those two docs happen to be who my husband sees. The dermatologist he first saw to remove the mole on his chest mentioned Hopkins, WHC and Inova as referrals. Asked where he’d go if he was the patient, he said Inova. Being the closest made it an easy choice.
Besides treatment being aligned with everything we’ve read, overall care and communication has been terrific, from virtually no waiting time to how we’re greeted. While ultimately the “side stuff” doesn’t matter compared to medical treatment, warmth and concern don’t hurt when you’re dealing with this beast.
One early sign was when they switched our appointment after the SLNB and WLE to the last of the day so we’d have more time to ask questions. (Of course that meant bad news, but still.) The communication and response time is better than from any medical office I’ve visited. That’s the Venna effect. Yesterday (Saturday) my husband’s side effects worsened, and it was 48 minutes from texting a staff member to reaching the doc to having a prescription in hand.
We’ve run into patients who drive a distance or fly, and those who followed Venna from WHC. The Schar Institute has a Life with Cancer Program in Inova hospitals and a pretty standalone building (with counseling, a gym, meditation, activities), where we went to a Melanoma Symposium. Funds for the building were donated by a man whose wife was treated at the cancer center. All programs are free for anyone affected by cancer – not just Inova patients.
I emailed a Life with Cancer dietician when my husband’s gut problems worsened. She’s been very helpful, and we’re meeting with her this week.
If we ever needed a second opinion, we’d likely see Dr. Weber in NY, if he was taking new patients, since he’s, well, Weber, and is the closest really big dog to us. And the bow ties.
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- July 2, 2018 at 10:39 pm
You and bjeans have given me a lot to consider. I went for my appointment today. It was not to talk to my oncologist about changing my medicine as I had been told. I asked the NP right off if we were going to discuss changing my medicine with Dr. Brooks and she said ……oh we did talk about that didn't we? My husband was with me today which helps. I was there because someone had changed my appointment from 2 weeks to 3 and they weren't supposed to and Dr. Brooks had been discussing my allergic reaction with the pharmacist and she wanted to get all the mixups and misinformation straightened out. She wasn't aware of what the NP had told me until my husband told her. They explained that they had given me a smaller dose to make sure I could handle the Opdivo. I am going every 2 weeks on a flat dose of 3 mg/kg. They say I am too small for the full 240mg. They are also sending me to a melanoma specialist at Wake Forest in NC to see if he agrees with their plan and if he has any suggestions for them. Dr. Brooks told me that if I have lost confidence in them, then I needed to find a doctor that I trust. I will wait until after I see the doctor at Wake Forest to decide what direction to take. I will seriously think about all that you and bjeans have shared with me. I thank you both for all of the information and concern. This miserable beast is much easier to deal with when you have people on this forum who make you feel like you're not fighting alone!
Robin
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- July 3, 2018 at 2:25 am
Dear Robin,
I will try to help out but I am not a medical expert. There are others on the board who have much more expertise and dont get things mixed up as I do.
That said, I am still a little confused at what you write. When you write 3mg/kg that is a typical ipi dosage not for opdivo/nivo. Nivo is 240 or 480 if every four weeks I think (see above) – and its mg/kg so if you are a low weight (ie your kg are low) then you will receive fewer mg – this takes care of your weight. So you can do the full 240 mg/kg I believe.
Its good that your husband was with you to take notes and stuff and to help you (ie to correct what the NP had told you) but I still am not completely sure that you have the correct facts – you may not have taken down correctly.
My advice would be to get as much written down as possible and to take all your meeting summaries (each infusion i get they give me a piece of paper summarizing my visit and what i received) so that the wake forest doctor has all the facts. you may need to bring scans (I dont know) or at least a summary report of the scans. When i first started with this i was very confused and the second opinion doctor helped clarify things by telling me what the first doctor had said but in a different way. Hopefully thats what will happen with you and you will have a clearer picture. Both in terms of what drug you were on last year (I guess keytruda), what happened while on keytruda and why did you change to ipi/nivo, why did you stop the ipi/nivi (presumably reaction to ipi), and then given all this what should you do next (nivo alone, back to keytruda, or is something else needed like a clinical trial or tvec given that you were switched off keytruda a few months ago so you need something extra?
Then you have to decide whether the wake forest team is good enough (maybe search on this forum and the internet) or whether you should go to Inova or DC (Georgetown maybe). I think the first step of meeting the wake forest team is a good idea, try to establish more clearly the facts (and maybe add to your profile, although I dont add to mine!), go through the questions I mentioned with them (other people may have better questions), and try to understand better. Then see what they can offer (they might be perfectly fine) or whether you would have more trial options in DC/Inova.
I am not sure its a question of having lost confidence but more understanding the facts and then understanding the various treatment decisions that have been made. In my case, the decisions might be wrong but I understand why we are making them. Your doctor should be able to explain this to you and not leave you confused (and thats why its great to have your husband present if he is good and can help you).
I hope the Wake Forest appointment is soon and then you can consider their advice or go to Inova or DC.
Good luck and best wishes
Mark
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- July 3, 2018 at 9:06 pm
Hi Robin –
I’m a little confused too, but pros on the forum could better respond.
That aside, being treated by a melanoma specialist was key for my husband’s and my comfort level.That’s not to say doctors shouldn’t consult with each other. But having a doctor who spends all or the majority of time on melanoma, and has for some years, was the goal, someone with a depth and breadth of knowledge for appropriate treatment options and for quick response to complications or side effects.
Sometimes people live in areas where there are no melanoma specialists, and some will travel farther for a specialist who then works with someone more local for infusions and other treatment. That can work too, and maybe that’s the tentative plan for you. In any case, good luck and let us know how it goes.
Beth
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- July 3, 2018 at 10:51 pm
The Dr. told me that they had given me a dose of 1mg/kg of just Opdivo the first treatment after my allergic reaction with ipi/nivo to make sure that I could handle the Opdivo. They said that there is a flat dosage beside the 240mg and 480mg. They are planning to give me 3mg/kg because they don't think I can handle the full 240mg. Does everyone get either 240mg or 480mg? Has no one heard of changing the dose because of size?
They are sending all of my information plus scan reports and scan cds to the specialist at Wake Forest. The doctor at Wake Forest only deals with melanoma and has for years. I saw him once before and he suggested my course of treatment and I go to Blue Ridge Cancer Center for treatments which is closer to me. I am going back to see if he agrees with their course of treatment or has other suggestions.
I did well on Keytruda until a lymph node in my left arm pit doubled in size and another showed up the same time the first doubled in size again. They were biopsied and are melanoma. That is why I was changed to ipi/novo. My pet scan lit up the 2 lymph nodes on left side, 1 lymph node on right side and 1 spot on L4. What I have on my liver and lungs did not light up. I had much more when melanoma was first diagnosed.
My husband always goes with me. He is an awesome man and takes very good care of me. I went in by myself that 1 time. I hope this clarifies things. I will let you know what I learn at Wake Forest.
Robin
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- July 3, 2018 at 11:29 pm
I'm more confused now than ever. None of what I was told makes any sense. I go next Monday for a treatment of Opdivo. I will ask the nurses that administer the treatment what my dose is. It makes my stomach turn thinking my life is in hands that make no sense. I WILL work to learn what is going on and what is best for me to do. Thank you both! I will let you know what happens.
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- July 4, 2018 at 12:47 am
There's a lot here that is not terribly clear. However, I can give you this information. Nivo is FDA approved. Your doc can dose it any way they want to. The standard set doses have been adopted for the sake of simplicity in administration. Docs can choose to make it simple and give a static (unchanging) dose of 240 mg every 2 weeks or 480 mg (simply double that) every 4 weeks. BUT!!! They could choose to give a dose tailored for the patient. How much do you weigh???? That is the crucial point here. I was in a phase 1 study (All phase 1 studies are dosing studies. How much of this will kill you? How much of this will help you???) of nivo in 2010. We (initially) had 3 arms. One group got 1mg/kg, the next got 3 mg/kg, and the third got 10mg/kg. After the results of my study they found that overall, the 3mg/kg group got the best results considering side effects that the increased dose facilitated. So…the 3mg/kg dose was the dosing structure that was initially adopted. Later, given the averages of weight over time…the FDA adopted the standard doses. Your doc can certainly treat you with X number of milligrams of medicine per your wt. For instance: I was in the 1mg/kg arm. I weigh around 135 pounds give or take. That results in the fact that I got roughly a 61mg dose every time I was given nivo. If I were to have been in the 3mg/kg arm I would have been given about 184mg at each dose. So….any dose of nivo could be administered by your doc.
However, to Mark's point….if you are not responding…you may need to try a new treatment altogether. I am not certain what your status is in that regard. Are you BRAF positive? If so, perhaps you could try targeted therapy which is a combo of BRAF/MEK inhibitors.
Most of all you should see a doc whose opinion you trust and respect. If your current provider doesn't fit that bill….attain another. Your life depends on it.
For what it's worth. Celeste
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- July 4, 2018 at 3:01 am
Thanks Celeste for helping out and explaining the nivo or opdivo doses – that although most people here talk about 240mg or 480mg you can also do mg/kg – say 3mg/kg seems standard and then your (Robin) dosage could then depend on your weight. i think they do this for me with my keytruda doses.
So I think your dosing is now getting clear.
Like Celeste, what might concern me more now is that if you drop ipi from ipi/nivo then you are back to nivo alone which is similar to keytruda alone – but since keytruda alone has seen some progression then nivo alone might not be fhe best option. Thus Celesete is suggesting check your BRAF status (of course!), and you might also want to check if there are clinical trials available which can help you (in particular a trial that looks promising for those with progression under keytruda),
i dont know anything about wake forest but I think i have seen them when looking up clinical trials, which is a good sign. Once you have all your info straight and can share with them then see what trials they offer (unless you are BRAF positive then you have more options). And consider Inova or Georgetown too to see if they have clinicial trials or for a second opinion.
I think this will form a good plan. I am sorry I am not great on the technical stuff but I think Celestes answer is spot on and I hope this will help you
best wishes Mark
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- July 4, 2018 at 3:38 pm
Thank you!!!! I have only had 2 ipi/nivo treatments and 1 nivo so I think it's early to say I'm not responding. Since I'm allergic to ipi and just had the first treatment since my reaction, they lowered my dose to make sure that I could handle the Opdivo. The doctor at Wake Forest will look at my treatment since day 1 and give recommendations on how to proceed. There are clinical trials and different treatments at Wake Forest. I am unsure of my BRAF status. I have had Chronic Fatigue Syndrome for 6 years and metastatic melanoma since December of 2016. My husband does almost all of my work plus his work. It has been very difficult for both of us to try to keep up with everything plus keep up with all the medical options. The NP did lie to me. The rest was me not understanding what they were doing and them not explaining things as well as they should. I appreciate all of you for your explanations, questions, and support. It's worth a lot!!!!
Robin
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