› Forums › General Melanoma Community › Wheels are in motion – NIH on Tuesday
- This topic has 18 replies, 5 voices, and was last updated 14 years, 6 months ago by
LynnLuc.
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- July 27, 2011 at 8:19 pm
We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study. He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say. He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda. His oncologist, Dr.
We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study. He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say. He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda. His oncologist, Dr. Khushalani, totally supported his decision, and put together all the necessary paperwork to fax down to NIH (even emailing me Rosenburg's latest report study on this trial last week for our reference). His PET result was good, indicating only the lymph nodes in the chest (bulky disease), and two very small hot spots – one a node by his collar bone, and one a possible sub-q near his original primary. Both were too small to see on a CT scan. His brain MRI was clean, and nuclear stress test and breathing tests were good. On a side note, he was B-RAF wild type – so I am assuming that any future trials with B-RAF and IPI would not be a possibility for him.
Hopefully we will know by next week what his decision will be for treatment. Because his disease is bulky, they do want him to start something quickly, as the nodes are pressing on some vital blood supplies that we do not want compromised. Although, if they were he would have to have radiation prior IL-2, which is one of the options we had pursued.
Thanks to all of you have replied over the last few weeks – you have led us in the right direction.
Best wishes to all,
Maria & Dave
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- July 27, 2011 at 9:34 pm
Dear Maria,
Wow, you have done such a great job researching and coordinating all of this. What wonderful timing and options, very hopeful and top notch. I'm so happy to hear that you got such guidance and assistance (and encouragement!) from Roswell, too. Good luck next week and many prayers still coming for Dave. I hope you have good support from family to assist your homelife needs while you are away and when you have to go to appointments and such. Dave and you are in my thoughts often.
CarolA
Amherst NY
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- July 27, 2011 at 9:34 pm
Dear Maria,
Wow, you have done such a great job researching and coordinating all of this. What wonderful timing and options, very hopeful and top notch. I'm so happy to hear that you got such guidance and assistance (and encouragement!) from Roswell, too. Good luck next week and many prayers still coming for Dave. I hope you have good support from family to assist your homelife needs while you are away and when you have to go to appointments and such. Dave and you are in my thoughts often.
CarolA
Amherst NY
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- July 27, 2011 at 9:48 pm
Thank you so much Carol. If it wasn't for this board, none of this would have been remotely possible. I think of you often, and hope you are doing well. My family is stretched thin with my brother facing terminal stomach cancer, but still help whenever possible, and we have many good friends as well. Dave's employer has been remarkably supportive. We're blessed to have so many good people in our lives.
We will keep you posted! I still have your number 🙂
Maria
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- July 27, 2011 at 9:48 pm
Thank you so much Carol. If it wasn't for this board, none of this would have been remotely possible. I think of you often, and hope you are doing well. My family is stretched thin with my brother facing terminal stomach cancer, but still help whenever possible, and we have many good friends as well. Dave's employer has been remarkably supportive. We're blessed to have so many good people in our lives.
We will keep you posted! I still have your number 🙂
Maria
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- July 28, 2011 at 12:55 am
Hi Maria, I just wanted to say thanks for the update. You have a great plan in place. People ask me why I always read the melanoma forums. Because knowledge is power…you know that and that is why you are so prepared for this. Last week I had dinner with three stage 4 survivors…one is officially in remission a year after diagnosis and the other 2 are out over 5 years. They had a plan..they have the knowledge and so do you! Take care
Emily -
- July 28, 2011 at 12:55 am
Hi Maria, I just wanted to say thanks for the update. You have a great plan in place. People ask me why I always read the melanoma forums. Because knowledge is power…you know that and that is why you are so prepared for this. Last week I had dinner with three stage 4 survivors…one is officially in remission a year after diagnosis and the other 2 are out over 5 years. They had a plan..they have the knowledge and so do you! Take care
Emily -
- July 28, 2011 at 5:02 am
Hi Maria,
I had a quick question for you. After reading your profile, it's eerily similar to mine. Can you tell me what kind of feeling Dave had in his throat and did his upper chest wall hurt? Did the matted nodes show up on a PET scan?
I've been telling my doctor that I have this chronic cough, headaches, sore throat, upper chest pain, neck pain, and shoulder pain but the PET scan and Brain MRI came back clear.
p.s. Good luck to Dave. I agree with you on this forum being very helpful!
Denise
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- July 28, 2011 at 5:02 am
Hi Maria,
I had a quick question for you. After reading your profile, it's eerily similar to mine. Can you tell me what kind of feeling Dave had in his throat and did his upper chest wall hurt? Did the matted nodes show up on a PET scan?
I've been telling my doctor that I have this chronic cough, headaches, sore throat, upper chest pain, neck pain, and shoulder pain but the PET scan and Brain MRI came back clear.
p.s. Good luck to Dave. I agree with you on this forum being very helpful!
Denise
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- July 28, 2011 at 11:30 am
Hi Denise,
Actually, the feeling in Dave's throat was more of "something is there". He had no difficulty swallowing, no pain, and no cough. The feeling actually went away so they don't even know if it was a symptom. It originally showed on a CT of the neck and chest, and also showed on his PET. The PET had indicated two more hot spots in the same area of his primary as well as a node (too small to be seen on a CT scan). The PET seemed to indicate "hot spot" areas better, just not exact dimensions.
I am curious, after reading your profile, your SNB came back for micromets? And they staged you at IIC? If that's the case, mention it to your oncologist. I don't believe that is right.
Good luck with whatever treatment you choose. Not an easy decision, but like Dave had said, at least he knew he was doing something.
Best wishes,
Maria
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- July 28, 2011 at 11:30 am
Hi Denise,
Actually, the feeling in Dave's throat was more of "something is there". He had no difficulty swallowing, no pain, and no cough. The feeling actually went away so they don't even know if it was a symptom. It originally showed on a CT of the neck and chest, and also showed on his PET. The PET had indicated two more hot spots in the same area of his primary as well as a node (too small to be seen on a CT scan). The PET seemed to indicate "hot spot" areas better, just not exact dimensions.
I am curious, after reading your profile, your SNB came back for micromets? And they staged you at IIC? If that's the case, mention it to your oncologist. I don't believe that is right.
Good luck with whatever treatment you choose. Not an easy decision, but like Dave had said, at least he knew he was doing something.
Best wishes,
Maria
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- July 28, 2011 at 4:20 pm
Denise –
Maria is right if you have any kind of cells in your lymph node, you are stage 3a.
Your profile says:
" .2mm sparse in sentinal lymph node. They said it wasn't enough to stage me 3 so I'm currently staged 2C"
If that is correct, then you are Stage 3 and you have more treatment options in terms of clinical trials.
My husband had 1-2 SINGLE CELLS in his sentinel node and he is considered stage 3a. If it was breast cancer it would be another story, but it is melanoma and it is staged differently.
I would contact your melanoma specialist to confirm. If you are seeing Spitler and Northern California Melanoma Center, she can probably clarify via email.
Best of luck
Emily in San Francisco
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- July 28, 2011 at 4:20 pm
Denise –
Maria is right if you have any kind of cells in your lymph node, you are stage 3a.
Your profile says:
" .2mm sparse in sentinal lymph node. They said it wasn't enough to stage me 3 so I'm currently staged 2C"
If that is correct, then you are Stage 3 and you have more treatment options in terms of clinical trials.
My husband had 1-2 SINGLE CELLS in his sentinel node and he is considered stage 3a. If it was breast cancer it would be another story, but it is melanoma and it is staged differently.
I would contact your melanoma specialist to confirm. If you are seeing Spitler and Northern California Melanoma Center, she can probably clarify via email.
Best of luck
Emily in San Francisco
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- July 29, 2011 at 1:09 am
Hi Emily and Maria,
Thanks so much for telling me those symptoms. I'm coughing up green flem, so I think I might be getting sick. That would account for the symptoms. I have to laugh because every little thing is now Melanoma related! It really can drive ya nuts!
Anyway it was kind of clarified in San Fran about my staging. Dr. Weber said that they would consider me 3B because of the ulceration I think. He said it would depend on what doctor you talk to but some would not consider .2mm and sparse a positive. He said that they consider it positive. So until I see my oncologist I don't know but I guess the specialists are the ones to take. It's been very frustrating because my surgeon didn't refer me to an oncologist until I saw a specialist. My insurance would have never approved for me to go to San Fran if I had an oncologist already. Insurance politics!
I think I'm going to go with San Fran recommendations and do the Interferon.
Emily, did your husband see Dr. Spitler? I really liked them there.
Thanks again.
Denise
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- July 29, 2011 at 1:09 am
Hi Emily and Maria,
Thanks so much for telling me those symptoms. I'm coughing up green flem, so I think I might be getting sick. That would account for the symptoms. I have to laugh because every little thing is now Melanoma related! It really can drive ya nuts!
Anyway it was kind of clarified in San Fran about my staging. Dr. Weber said that they would consider me 3B because of the ulceration I think. He said it would depend on what doctor you talk to but some would not consider .2mm and sparse a positive. He said that they consider it positive. So until I see my oncologist I don't know but I guess the specialists are the ones to take. It's been very frustrating because my surgeon didn't refer me to an oncologist until I saw a specialist. My insurance would have never approved for me to go to San Fran if I had an oncologist already. Insurance politics!
I think I'm going to go with San Fran recommendations and do the Interferon.
Emily, did your husband see Dr. Spitler? I really liked them there.
Thanks again.
Denise
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- July 29, 2011 at 8:30 pm
Hi Denise – no, Mike didnt see Spitler but I have chatted with her on email. She used to have the greatest amount of clinical trial in the Bay Area but the others institutions are stepping it up now. My sister in law is the melanoma nurse coordinator at a major University in the Bay Area so we are up on a lot of the docs in the area. Right now he has a private oncologist but he has been to UCSF. If he were to progress he would move over to Dr Minor at Cal Pacific. He has had amazing results with stage 4 biochemo. I personally know 5 people who are stage 4 and had complete durable responses with Minor's biochemo cocktail.
So if you are 3B you really do have more options for clinical trials – Yervoy adjuvant trials being one of them – but you must enter the study within a certain time after a node dissection. There is also the MAGE 3 Derma trial, I beleive, for 3B.
Take care, Denise! Let us know what the docs say.
Emily
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- July 29, 2011 at 8:30 pm
Hi Denise – no, Mike didnt see Spitler but I have chatted with her on email. She used to have the greatest amount of clinical trial in the Bay Area but the others institutions are stepping it up now. My sister in law is the melanoma nurse coordinator at a major University in the Bay Area so we are up on a lot of the docs in the area. Right now he has a private oncologist but he has been to UCSF. If he were to progress he would move over to Dr Minor at Cal Pacific. He has had amazing results with stage 4 biochemo. I personally know 5 people who are stage 4 and had complete durable responses with Minor's biochemo cocktail.
So if you are 3B you really do have more options for clinical trials – Yervoy adjuvant trials being one of them – but you must enter the study within a certain time after a node dissection. There is also the MAGE 3 Derma trial, I beleive, for 3B.
Take care, Denise! Let us know what the docs say.
Emily
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