› Forums › General Melanoma Community › Wait and re-CT…?
- This topic has 18 replies, 4 voices, and was last updated 7 years, 7 months ago by Mamapegela.
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- August 24, 2016 at 11:37 pm
Soooo… back from the wonderful wedding of my daughter and back to dealing with M.
I had a CT at the beginning of August which showed my previous 2 lung nodules had grown and I have a new one. There were two present on my first CT scan in April prior to my CLND left neck. I had been all ready to enroll in a clinical trial as stage 3C (pembro vs hi dose interferon or ipi) but due to the changes in the lung nodules I am now ineligible.
My oncologist confered with the interventional radiologist and the IR doctor said that they could not safely do a needle biopsy because of the small size (largest is 8mm) and location near to my diaphragm. They want to wait 2 more months and re-CT and go from there, even though they agree this is most likely metastisis.
I have trouble accepting this plan. I have asked about a VATs but they declined stating the invasive nature, also I asked why not just start treatment and assume this is melanoma but they will not do it without proof via biopsy. So this puts me in the uncomfortable position of being probably stage 4 but not being able to get treatment and not being able to do a stage 3 clinical trial.
Just wondering if others have gone down this road and how it turned out for you? I am tempted to "insist" on VATs but am not sure that they will do it even if I do.
Thanks and wishing the best for all-
Peggy
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- August 25, 2016 at 12:06 am
Soooo stage IV melanoma isn't more deadly?! A biopsy can lead to lung air leaks, missed tumor etc. whereas VATS will get rid of the thing once and for all. Surgery can still be considered with curative intent with that small a tumor burden. VATS is minimally invasive. Why wait for a tumor to get bigger for conveinence? All the while microscopically bits of cells may be breaking off further seeding your body elsewhere.
Just saying, I would be pushing for a second opinion to get the thing out. What is worse, possible complications from VATS or death from progressive metastatic melanoma…… I can say this having VATS followed by a pulmonary embolus the next day. I am now and have been NED for over 6 years! VATS got rid of my lung tumor and IL-2 the one remaining tiny tumor in my pectoralis muscle.
Go with your gut, get a second opinion.
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- August 25, 2016 at 12:06 am
Soooo stage IV melanoma isn't more deadly?! A biopsy can lead to lung air leaks, missed tumor etc. whereas VATS will get rid of the thing once and for all. Surgery can still be considered with curative intent with that small a tumor burden. VATS is minimally invasive. Why wait for a tumor to get bigger for conveinence? All the while microscopically bits of cells may be breaking off further seeding your body elsewhere.
Just saying, I would be pushing for a second opinion to get the thing out. What is worse, possible complications from VATS or death from progressive metastatic melanoma…… I can say this having VATS followed by a pulmonary embolus the next day. I am now and have been NED for over 6 years! VATS got rid of my lung tumor and IL-2 the one remaining tiny tumor in my pectoralis muscle.
Go with your gut, get a second opinion.
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- August 25, 2016 at 12:13 am
OK RIght? Yes thanks I am on that same page. I do not want to wait while my cancer progresses. Thanks, I needed to hear from someone who has walked the walk and I agree with you. I will be pressing my Dr. in the am for the VATS. I got all of this information over the phone from his nurse! When I got upset she said shoud I have the doctor call you and I said YES!
Thanks again.
Peggy
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- August 25, 2016 at 12:13 am
OK RIght? Yes thanks I am on that same page. I do not want to wait while my cancer progresses. Thanks, I needed to hear from someone who has walked the walk and I agree with you. I will be pressing my Dr. in the am for the VATS. I got all of this information over the phone from his nurse! When I got upset she said shoud I have the doctor call you and I said YES!
Thanks again.
Peggy
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- August 25, 2016 at 12:13 am
OK RIght? Yes thanks I am on that same page. I do not want to wait while my cancer progresses. Thanks, I needed to hear from someone who has walked the walk and I agree with you. I will be pressing my Dr. in the am for the VATS. I got all of this information over the phone from his nurse! When I got upset she said shoud I have the doctor call you and I said YES!
Thanks again.
Peggy
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- August 25, 2016 at 12:06 am
Soooo stage IV melanoma isn't more deadly?! A biopsy can lead to lung air leaks, missed tumor etc. whereas VATS will get rid of the thing once and for all. Surgery can still be considered with curative intent with that small a tumor burden. VATS is minimally invasive. Why wait for a tumor to get bigger for conveinence? All the while microscopically bits of cells may be breaking off further seeding your body elsewhere.
Just saying, I would be pushing for a second opinion to get the thing out. What is worse, possible complications from VATS or death from progressive metastatic melanoma…… I can say this having VATS followed by a pulmonary embolus the next day. I am now and have been NED for over 6 years! VATS got rid of my lung tumor and IL-2 the one remaining tiny tumor in my pectoralis muscle.
Go with your gut, get a second opinion.
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- August 25, 2016 at 2:04 am
Hi Peggy,
I had a similar scenario, except mine was in the liver. It was/is small and in a spot that was impossible to biopsy. All of the Drs I saw said this was a good thing, but also agreed not to wait and see with melanoma. I wanted to have it surgically removed but my oncologist really recommended that we go with pembro and that we start right away. I was really pushing for surgery and I wanted to add IPI to the pembro while we were at it. My oncologist was open to what I wanted but really kept with the pembro bc it works really well on low disease burden. He also kindly added that while we only saw one tumor on the scan there are typically more when they get in there which would mean systemic treatment is the way to go.
Also my insurance didn't question not having the biopsy to get started on the pembro. I know the radiologist was concerned about that. Maybe I'm just lucky. Keep pushing.
Oh and the pembro has been very tolerable
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- August 28, 2016 at 3:44 am
Thanks for sharing your experience . I have an appointment with my oncologist at the University of Michigan on this upcoming Tuesday and I am going to ask about just doing treatment vs doing a VATS now rather than waiting. I was diagnosed in April with stage 3c and still have not had any adjuvant treatment. I have waited long enough I think!
thanks and all the best-
Peggy
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- August 28, 2016 at 3:44 am
Thanks for sharing your experience . I have an appointment with my oncologist at the University of Michigan on this upcoming Tuesday and I am going to ask about just doing treatment vs doing a VATS now rather than waiting. I was diagnosed in April with stage 3c and still have not had any adjuvant treatment. I have waited long enough I think!
thanks and all the best-
Peggy
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- August 28, 2016 at 3:44 am
Thanks for sharing your experience . I have an appointment with my oncologist at the University of Michigan on this upcoming Tuesday and I am going to ask about just doing treatment vs doing a VATS now rather than waiting. I was diagnosed in April with stage 3c and still have not had any adjuvant treatment. I have waited long enough I think!
thanks and all the best-
Peggy
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- August 25, 2016 at 2:04 am
Hi Peggy,
I had a similar scenario, except mine was in the liver. It was/is small and in a spot that was impossible to biopsy. All of the Drs I saw said this was a good thing, but also agreed not to wait and see with melanoma. I wanted to have it surgically removed but my oncologist really recommended that we go with pembro and that we start right away. I was really pushing for surgery and I wanted to add IPI to the pembro while we were at it. My oncologist was open to what I wanted but really kept with the pembro bc it works really well on low disease burden. He also kindly added that while we only saw one tumor on the scan there are typically more when they get in there which would mean systemic treatment is the way to go.
Also my insurance didn't question not having the biopsy to get started on the pembro. I know the radiologist was concerned about that. Maybe I'm just lucky. Keep pushing.
Oh and the pembro has been very tolerable
-
- August 25, 2016 at 2:04 am
Hi Peggy,
I had a similar scenario, except mine was in the liver. It was/is small and in a spot that was impossible to biopsy. All of the Drs I saw said this was a good thing, but also agreed not to wait and see with melanoma. I wanted to have it surgically removed but my oncologist really recommended that we go with pembro and that we start right away. I was really pushing for surgery and I wanted to add IPI to the pembro while we were at it. My oncologist was open to what I wanted but really kept with the pembro bc it works really well on low disease burden. He also kindly added that while we only saw one tumor on the scan there are typically more when they get in there which would mean systemic treatment is the way to go.
Also my insurance didn't question not having the biopsy to get started on the pembro. I know the radiologist was concerned about that. Maybe I'm just lucky. Keep pushing.
Oh and the pembro has been very tolerable
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- August 25, 2016 at 7:45 pm
Hi Peggy,
I was in a similar situation as you… Stage 3C, Nodules in the lung, had a lung biopsy on a 12mm nodule… useless, contemplated VAT. But, I had been on a clinical trial IPIvsNivo when the lung nodules showed up.
Since then, they have shrunk… no VAT for the time being.
May I ask, why won't they offer IPI? It's FDA approved for stage 3
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- August 25, 2016 at 7:45 pm
Hi Peggy,
I was in a similar situation as you… Stage 3C, Nodules in the lung, had a lung biopsy on a 12mm nodule… useless, contemplated VAT. But, I had been on a clinical trial IPIvsNivo when the lung nodules showed up.
Since then, they have shrunk… no VAT for the time being.
May I ask, why won't they offer IPI? It's FDA approved for stage 3
-
- August 25, 2016 at 7:45 pm
Hi Peggy,
I was in a similar situation as you… Stage 3C, Nodules in the lung, had a lung biopsy on a 12mm nodule… useless, contemplated VAT. But, I had been on a clinical trial IPIvsNivo when the lung nodules showed up.
Since then, they have shrunk… no VAT for the time being.
May I ask, why won't they offer IPI? It's FDA approved for stage 3
-
- August 28, 2016 at 3:52 am
Hi Juan, I was not able to do the Ipi because my oncologist will not prescribe it for stage III due to the side effect profile. I was about to start a clinical trial with Ipi or interferon versus pembro however my scans show the changes in my lung nodules so I am now ineligible.
When I saw Dr Glitza at MD Anderson for a second opinion she told me that although she does give some of her stage 3 patients Ipi (at the 3mg/kg dose) 70% of her colleagues do not, so there is a lot of controversy about Ipi for stage 3.
After seeing her I decided to do the clinical trial and take my chances with Ipi rather than go thru interferon, but as I said that's off the table now.
I hope to have a plan forward soon.
Thank you for your response and all he best-
Peggy
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- August 28, 2016 at 3:52 am
Hi Juan, I was not able to do the Ipi because my oncologist will not prescribe it for stage III due to the side effect profile. I was about to start a clinical trial with Ipi or interferon versus pembro however my scans show the changes in my lung nodules so I am now ineligible.
When I saw Dr Glitza at MD Anderson for a second opinion she told me that although she does give some of her stage 3 patients Ipi (at the 3mg/kg dose) 70% of her colleagues do not, so there is a lot of controversy about Ipi for stage 3.
After seeing her I decided to do the clinical trial and take my chances with Ipi rather than go thru interferon, but as I said that's off the table now.
I hope to have a plan forward soon.
Thank you for your response and all he best-
Peggy
-
- August 28, 2016 at 3:52 am
Hi Juan, I was not able to do the Ipi because my oncologist will not prescribe it for stage III due to the side effect profile. I was about to start a clinical trial with Ipi or interferon versus pembro however my scans show the changes in my lung nodules so I am now ineligible.
When I saw Dr Glitza at MD Anderson for a second opinion she told me that although she does give some of her stage 3 patients Ipi (at the 3mg/kg dose) 70% of her colleagues do not, so there is a lot of controversy about Ipi for stage 3.
After seeing her I decided to do the clinical trial and take my chances with Ipi rather than go thru interferon, but as I said that's off the table now.
I hope to have a plan forward soon.
Thank you for your response and all he best-
Peggy
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