› Forums › General Melanoma Community › Adrenal Gland Tumor Has Grown – Next Steps
- This topic has 15 replies, 4 voices, and was last updated 12 years, 1 month ago by
WendyR3.
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- March 13, 2012 at 5:51 pm
Hi to all. I am a Stage IV survivor, over four years since my Stage IV diagnosis. As some of you know, I had an unusually good response to Nexavar and have been on the drug with minimal side effects since initial treatment. I did get tested a few years ago and I am BRAF positive.
Hi to all. I am a Stage IV survivor, over four years since my Stage IV diagnosis. As some of you know, I had an unusually good response to Nexavar and have been on the drug with minimal side effects since initial treatment. I did get tested a few years ago and I am BRAF positive.
I am now faced with an adrenal gland tumor that has been there for three years, not doing much of anything until my last scan showed an almost doubling of size, It is now 5.4cm. Melanoma was confirmed by a fine needle biopsy, got the path report late last week. The plan is to remove that sucker and stay on the Nexavar. I am trying to avoid moving to another treatment for as long as possible, since I also have multiple sclerocis and psoriasis, both autoimmune diseases, that make me a questionable candidate for ipi and other immune based therapies. So my treatment options are limited and I want to preserve them for as long as possible. The thinking is that since I haven't had any new tumors in three years that perhaps the adrenal gland tumor were some errant cells and the Nexavar is still giving me significant benefit. The only other tumors I have had this time are two in my lungs that shrunk considerably during initial treatment and haven't grown for about three years. At my last PET scan they did not light up at all, so we think they might not be active at all. Both my general oncologist and Dr. Daud, at UCSF Melanoma Treatment Center, conccur with this plan. Which makes me very happy, because this is the direction I wanted to take when I heard the news about the tumor growth.
I am hoping to hear in a few days what surgical technique is recommended. My oncologist is talking to the SRS guys, the laproscopic guys, and the regular surgical guys to see if I am a candidate for a less invasive surgery than just cutting me open. In the meantime I am concentrating on having lots of fun, being with the people who I love, and trying to get my taxes done!
BTW, are there any fellow Melanoma Warriors out there who are Kaiser patients in the SF/Bay area? Haven't met anyone in quite awhile and would love to network with you!
Thanks to so many on this board who have provided me with information and support over the last four plus years. I have an intuition that I have many days, months and perhaps years of life ahead of me, and I intend to live each day as fully as possible.
Love to all!
Eileen L
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- March 13, 2012 at 8:18 pm
Eileen,
I know I've already written to you but just had the a follow up you need to look into. What will they do next when you no longer have your adrenal gland? I went to my endocronologist yesterday and he told me that I now have Cushing's disease from the Dex. Because this is from steroidsd it should go away in time, however when I started reading of what the adrenal does. So as part of your plan you need to also talk to an endocronologist to see what you will do after they blast or remove with surgery that you will do.
Sending hugs,
Linda
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- March 13, 2012 at 8:18 pm
Eileen,
I know I've already written to you but just had the a follow up you need to look into. What will they do next when you no longer have your adrenal gland? I went to my endocronologist yesterday and he told me that I now have Cushing's disease from the Dex. Because this is from steroidsd it should go away in time, however when I started reading of what the adrenal does. So as part of your plan you need to also talk to an endocronologist to see what you will do after they blast or remove with surgery that you will do.
Sending hugs,
Linda
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- March 13, 2012 at 8:18 pm
Eileen,
I know I've already written to you but just had the a follow up you need to look into. What will they do next when you no longer have your adrenal gland? I went to my endocronologist yesterday and he told me that I now have Cushing's disease from the Dex. Because this is from steroidsd it should go away in time, however when I started reading of what the adrenal does. So as part of your plan you need to also talk to an endocronologist to see what you will do after they blast or remove with surgery that you will do.
Sending hugs,
Linda
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- March 14, 2012 at 9:04 pm
Hi Eileen, I don't think we've met, but my husband is also Stage IV, with Kaiser, in San Jose. I usually read the Melanoma International board, but I've started reading this one, too. Jim was originally diagnosed in Jan, 2010 with a nodular melanoma on his upper right arm. By September 2010, he was metastatic, to lungs, lymph nodes, and adrenal gland. We've tried Temodar, Axitinib, and Ipi. He progressed on all of them. The axitinib was a clinical trial at UCSF with Drs. Daud and Algani.
Kaiser has nothing else to offer us, and we're still looking for possible trials. But he's now metastatic to liver, kidney and brain, so time is running out. The brain lesion was treated with cyberknife, and we just had a 4-week repeat MRI, and waiting for results. It would have to be clear to be eligible for any other trials.
I hope you can get the tumor out from your adrenal gland. That's the one giving us the most trouble now. It grows so fast! And I'm glad you've had a response to some kind of treatment. What category is that treatment in? Is it still available? I think it's probably too late for us, but it's good to know something is out there,
Which Kaiser facility do you go to? We were able to get the Ipi in San Jose, since it was approved by the FDA, but I don't think Kaiser advertises that it's available. We've pretty much been on our own, doing research and asking for referrals. We're trying to find a PD-1 trial he can qualify for now. But this week we're in Hawaii, enjoying some good times!
Good luck with your options, and keep us posted!
Wendy
p.s. I have MS, too, but very mild. Just another dimension to the mix.
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- March 15, 2012 at 4:25 am
Hi, Wendy and good to hear from you. Sorry about your husband. Has anyone suggested he go to Riverside Kaiser for a consult? There is a Kaiser doc there, Dr. Gailiani, who is a melanoma expert. Kaiser sends all of their patients there for IL-2 treatment, although with the approval of Ipi, etc. I am not sure how much IL-2 they are doing anymore at Riverside for melanoma patients. I "googled" for his contact info and actually was sent to a link on the AIM board. Here is the info:
Regional Director of Advanced BioChemotherapy Program
Director of Hematology/Oncology
Kaiser Permanente Riverside Medical Center
10800 Magnolia Ave. #4ERiverside, CA 92505
Appts/Messages: 951-353-4558As far as the drug I am on, Nexavar, it is not prescribed for Melanoma patients. When I was diagnosed over four years ago there was a Phase III trial of the drug for Melanoma patients. The results were so disappointing that they stopped the trial before completion. Interestingly, there are a few of us who seemed to respond. I am fortunate in that the drug was already approved for other cancers so my Kaiser oncologist prescribed it to me off label and the HMO paid for it. No other HMO would have shouldered the cost!
I wish you well in trying to find a trial for Jim. Enjoy Hawaii, live life to its fullest. That has been my philosopy since my diagnosis. BTW, I go to Kaiser in San Francisco. I have managed my care there by paying out of pocket for intermittent consults from Dr. Daud and then "convincing" my Kaiser onc to do the right thing. So far this has been a relatively easy process but I know that might change if Dr. Daud's recommendation diverge from what my KP doc is willing to do.
Take care, and keep in touch,
Eileen L
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- March 15, 2012 at 8:52 pm
Thanks for the reference. Our oncologist has spoken with Dr. Galiani several times. My husband doesn't qualify for IL2 treatments, and it sounded too toxic, anyway. I'm glad you've had some response, and that Kaiser will continue it. We keep in touch by email with Dr. Daud and Algazy in case something else opens up. And we're always checking the forums and clinical trial.gov. When will they decide about removing the adrenal gland tumor? Good luck with that!
Wendy
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- March 15, 2012 at 8:52 pm
Thanks for the reference. Our oncologist has spoken with Dr. Galiani several times. My husband doesn't qualify for IL2 treatments, and it sounded too toxic, anyway. I'm glad you've had some response, and that Kaiser will continue it. We keep in touch by email with Dr. Daud and Algazy in case something else opens up. And we're always checking the forums and clinical trial.gov. When will they decide about removing the adrenal gland tumor? Good luck with that!
Wendy
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- March 15, 2012 at 8:52 pm
Thanks for the reference. Our oncologist has spoken with Dr. Galiani several times. My husband doesn't qualify for IL2 treatments, and it sounded too toxic, anyway. I'm glad you've had some response, and that Kaiser will continue it. We keep in touch by email with Dr. Daud and Algazy in case something else opens up. And we're always checking the forums and clinical trial.gov. When will they decide about removing the adrenal gland tumor? Good luck with that!
Wendy
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- March 15, 2012 at 4:25 am
Hi, Wendy and good to hear from you. Sorry about your husband. Has anyone suggested he go to Riverside Kaiser for a consult? There is a Kaiser doc there, Dr. Gailiani, who is a melanoma expert. Kaiser sends all of their patients there for IL-2 treatment, although with the approval of Ipi, etc. I am not sure how much IL-2 they are doing anymore at Riverside for melanoma patients. I "googled" for his contact info and actually was sent to a link on the AIM board. Here is the info:
Regional Director of Advanced BioChemotherapy Program
Director of Hematology/Oncology
Kaiser Permanente Riverside Medical Center
10800 Magnolia Ave. #4ERiverside, CA 92505
Appts/Messages: 951-353-4558As far as the drug I am on, Nexavar, it is not prescribed for Melanoma patients. When I was diagnosed over four years ago there was a Phase III trial of the drug for Melanoma patients. The results were so disappointing that they stopped the trial before completion. Interestingly, there are a few of us who seemed to respond. I am fortunate in that the drug was already approved for other cancers so my Kaiser oncologist prescribed it to me off label and the HMO paid for it. No other HMO would have shouldered the cost!
I wish you well in trying to find a trial for Jim. Enjoy Hawaii, live life to its fullest. That has been my philosopy since my diagnosis. BTW, I go to Kaiser in San Francisco. I have managed my care there by paying out of pocket for intermittent consults from Dr. Daud and then "convincing" my Kaiser onc to do the right thing. So far this has been a relatively easy process but I know that might change if Dr. Daud's recommendation diverge from what my KP doc is willing to do.
Take care, and keep in touch,
Eileen L
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- March 15, 2012 at 4:25 am
Hi, Wendy and good to hear from you. Sorry about your husband. Has anyone suggested he go to Riverside Kaiser for a consult? There is a Kaiser doc there, Dr. Gailiani, who is a melanoma expert. Kaiser sends all of their patients there for IL-2 treatment, although with the approval of Ipi, etc. I am not sure how much IL-2 they are doing anymore at Riverside for melanoma patients. I "googled" for his contact info and actually was sent to a link on the AIM board. Here is the info:
Regional Director of Advanced BioChemotherapy Program
Director of Hematology/Oncology
Kaiser Permanente Riverside Medical Center
10800 Magnolia Ave. #4ERiverside, CA 92505
Appts/Messages: 951-353-4558As far as the drug I am on, Nexavar, it is not prescribed for Melanoma patients. When I was diagnosed over four years ago there was a Phase III trial of the drug for Melanoma patients. The results were so disappointing that they stopped the trial before completion. Interestingly, there are a few of us who seemed to respond. I am fortunate in that the drug was already approved for other cancers so my Kaiser oncologist prescribed it to me off label and the HMO paid for it. No other HMO would have shouldered the cost!
I wish you well in trying to find a trial for Jim. Enjoy Hawaii, live life to its fullest. That has been my philosopy since my diagnosis. BTW, I go to Kaiser in San Francisco. I have managed my care there by paying out of pocket for intermittent consults from Dr. Daud and then "convincing" my Kaiser onc to do the right thing. So far this has been a relatively easy process but I know that might change if Dr. Daud's recommendation diverge from what my KP doc is willing to do.
Take care, and keep in touch,
Eileen L
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- March 14, 2012 at 9:04 pm
Hi Eileen, I don't think we've met, but my husband is also Stage IV, with Kaiser, in San Jose. I usually read the Melanoma International board, but I've started reading this one, too. Jim was originally diagnosed in Jan, 2010 with a nodular melanoma on his upper right arm. By September 2010, he was metastatic, to lungs, lymph nodes, and adrenal gland. We've tried Temodar, Axitinib, and Ipi. He progressed on all of them. The axitinib was a clinical trial at UCSF with Drs. Daud and Algani.
Kaiser has nothing else to offer us, and we're still looking for possible trials. But he's now metastatic to liver, kidney and brain, so time is running out. The brain lesion was treated with cyberknife, and we just had a 4-week repeat MRI, and waiting for results. It would have to be clear to be eligible for any other trials.
I hope you can get the tumor out from your adrenal gland. That's the one giving us the most trouble now. It grows so fast! And I'm glad you've had a response to some kind of treatment. What category is that treatment in? Is it still available? I think it's probably too late for us, but it's good to know something is out there,
Which Kaiser facility do you go to? We were able to get the Ipi in San Jose, since it was approved by the FDA, but I don't think Kaiser advertises that it's available. We've pretty much been on our own, doing research and asking for referrals. We're trying to find a PD-1 trial he can qualify for now. But this week we're in Hawaii, enjoying some good times!
Good luck with your options, and keep us posted!
Wendy
p.s. I have MS, too, but very mild. Just another dimension to the mix.
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- March 14, 2012 at 9:04 pm
Hi Eileen, I don't think we've met, but my husband is also Stage IV, with Kaiser, in San Jose. I usually read the Melanoma International board, but I've started reading this one, too. Jim was originally diagnosed in Jan, 2010 with a nodular melanoma on his upper right arm. By September 2010, he was metastatic, to lungs, lymph nodes, and adrenal gland. We've tried Temodar, Axitinib, and Ipi. He progressed on all of them. The axitinib was a clinical trial at UCSF with Drs. Daud and Algani.
Kaiser has nothing else to offer us, and we're still looking for possible trials. But he's now metastatic to liver, kidney and brain, so time is running out. The brain lesion was treated with cyberknife, and we just had a 4-week repeat MRI, and waiting for results. It would have to be clear to be eligible for any other trials.
I hope you can get the tumor out from your adrenal gland. That's the one giving us the most trouble now. It grows so fast! And I'm glad you've had a response to some kind of treatment. What category is that treatment in? Is it still available? I think it's probably too late for us, but it's good to know something is out there,
Which Kaiser facility do you go to? We were able to get the Ipi in San Jose, since it was approved by the FDA, but I don't think Kaiser advertises that it's available. We've pretty much been on our own, doing research and asking for referrals. We're trying to find a PD-1 trial he can qualify for now. But this week we're in Hawaii, enjoying some good times!
Good luck with your options, and keep us posted!
Wendy
p.s. I have MS, too, but very mild. Just another dimension to the mix.
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