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  • #20877
    Jillly
    Participant

    My husband was first diagnosed with melanoma in 2010 when a mole on his leg was removed and we found out was at stage 2. He had a sentinel node biopsy that was negative. Fast forward to February this year, when he had 20-30 blue spots appear on his upper leg. He had numerous biopsies and the last one they took was melanoma. Between the first and second visit to Mayo, another tumor appeared. He underwent an isolated limb perfusion and also hds 19 lymph nodes taken from the ileac region in his abdomen. Seven tested positive for melanoma. The tumor that appeared prior to the perfusion increased in size and was removed last week. So I don’t know if that means the perfusion did not work. We will get the pathology report on the tumor tomorrow and he will have another PET scan at Mayo on Friday. He has tested negative for the BRAF gene so has started on Leukine. I am expecting bad news tomorrow and Friday. I have not been able to find any information on prognosis or what to expect when the cancer spreads beyond the lymph nodes. Any information would be appreciated.

    #58152
    abdorma
    Participant

    Hi Jilly,

    Someone else on this board posted this phrase quite a while back and my husband and I have tried to follow it: “Prepare for the worst; expect the best” and it has helped us immensely on the eve of PET scans or even more when you are waiting in the 10th floor oncology department’s waiting room (he goes to Mayo too) for his name to be called.

    My husband was initially diagnosed with Stage IIIB melanoma in February 2011 with no lymph node involvement but satellite mets intransit which we understand to mean the little melanoma buggers were trying to get to the lymph nodes but hadn’t made it yet. He received Leukine injections from me (we called them, time to do shots — not tequilla) from June 2011 to January 2012 when his melanoma had metascized to his lung and a lymph node near his pulmonary artery. He had successful surgery to remove the two and went back on Leukine in February until August of 2012 when his PET scan showed “widespread metastic disease” — he had too many tumors to count. They immediately stopped the Leukine and put him on Zelboraf which has been extremely effective for him — he had one remaining lymph node with melanoma on Novemeber 30th PET scan.

    He never had limb perfusion because his melanoma has always been in his trunk or organs/lymph nodes in his trunk. I was somewhat skeptical about returning to the Leukine shots last February since it appeared it did not work, but the oncologist said, “we don’t know how many spots he would have if he didn’t have Leukine.” I can tell you he would GLADLY stay with the Leukine shots than do the Zelboraf as the side effects of Leukine were really minimal compared to Zelboraf.

    If he has bad news tomorrow, but melanoma is limited to one or two spots, they may suggest IPI as a systemic treatment. If he has multiple tumors show up on the PET scan, I would expect he will go on Zelboraf but everybody is different.

    I forgot to mention that he had one lymph node with melanoma in May that they surgically removed. I think if we had to do our life over again, he would choose to go on the IPI last May and see how he did with it rather than have the surgery to remove lymph node (surgery was no big deal) but the lymph node they removed last January had encapsulation which means the melanoma had “escaped” the lymph node and was running into his lymph system. That is not good news we now know as it meant he was at greater risk for recurrence.

    If he gets good news, ask about a clinical trial for folks who are currently NED but have had Stage III cancer — I am thinking that he might qualify. It is for a melanoma vaccine trial which my husband was scheduled to go on until he got His Really Bad Pet Scan last August. I think the trial is still open, but I may be wrong.

    My advice is: listen carefully to what they suggest after you get the pathology report tomorrow. Then read or listen to every webinar on further treatment you have time to listen to on Thursday night so you are fully prepared to discuss options on Friday after you get the PET scan results.

    My husband is currently doing massive cleanup after entertaining his family for dinner tonight and feels great(except that he is washing dishes.) His Zelboraf journey has been at times difficult but for the last few weeks, he has felt almost normal!

    So hang in there. We wish you really good news tomorrow and Friday!

    ann

    #58153
    Jillly
    Participant

    Thank you for your quick reply, Ann. We have had quite the journey already with this disease. He is diagnosed as Stage 4 in transit. He has had a rough time after the procedure; he had quite a bit of lymphedema in his leg and belly and we found out he was filling with fluid. So then he had to have a drain for seven weeks. They did not take lymph nodes from his groin, but skipped over them to take the ones in the ileac region. The surgeon felt the risk of infection was too high to take them there. I do think they will find cancer in those nodes as he has some swelling there now too. And the tumor that was just removed is quite close to that area too.

    Our oncologist told us about the study that you mentioned and Vern was going to become a part of it. However, at the last minute they threw in a placebo and we all felt the risk was too great that he would get the placebo and lose too much time with no benefit.

    I have been operating under the “prepare for the worst but hope for the best” also, but I have a deep feeling that things will not go well. I wish I could do more to help him. He has a great attitude though. We have dealt with a lot during our marriage and this is one more thing that we will face together, as we always have. :)

    #58154
    abdorma
    Participant

    Hi Jilly,

    Been thinking about you and Vern the last two days and hope that you guys came out better than you thought. I think I missed the rather important point in your first post that your husband is BRAF negative so Zelboraf is not likely a possibility for you. I truly hope your gut was wrong!

    Let us know how you came out if you get a chance. Hang in there. Sounds like you two have already survived a lot and are ready to take whatever comes your way!

    ann

    #58155
    Jillly
    Participant

    Well, first of all we got the pathology report back and it was melanoma. No surprises there other than how quickly it changed in size and appearance. After our three appointments at Mayo turned into eight (4 scans!) we found out that there is melanoma in the lymph nodes in his right groin and in one lymph node near his bladder. He is scheduled for surgery on January 7th. He will be suspending the Leukine treatment until he is healed from the surgery and will be start radiation then also. Even though I expected to hear bad news the reality of it still hits you pretty hard. Makes me wonder how much time he will have and what more will he have to endure.

    #58156
    Catherine Poole
    Keymaster

    Jilly, has he been tested for BRAF recently? If not, ask for the Cobas test. Also, ask if he has had the NRAS test. This may open up a trial for him or other therapy. PD1 is certainly an option too and there are many trials opening. Let me know if I can be of further assistance to you.

    #58157
    Jillly
    Participant

    What are those tests? I have never read anything about them. Yes, he was just tested for the BRAF in September. Our insurance company has denied payment for the test, saying that it is experimental. We are appealing it – kind of odd that they would deny $600 when they had no problem paying the $84,000 for the perfusion and scans!

    He has not had a chance to do any other kind of treatment yet due to the problems he had after the perfusion. I did not mention it earlier, but he began to fill with fluid and ended up having a pigtail drain put in his abdomen. He had it for seven weeks and they did not want him to do the Leukine until it was removed and he was healing. He was finally feeling pretty good and now will have another surgery he will have to recover from. He has such a great attitude – just wants to get the surgery done and move forward. Never complains unless he is trying to get out of doing something – then it’s “I can’t…I got the cancer bad!” He’s so funny but I try not to encourage him otherwise he drives me crazy!

    Jillly

    #58158
    Jillly
    Participant

    Ann, I am curious as to how your husband was initially diagnosed? Have they given you a prognosis? I know that once it gets into the lymph system it can go anywhere. I keep thinking that pretty soon we are going to see Vern’s show up in an organ; now that it has been found in the lymph node by his bladder it seems pretty imminent.

    Jillly

    #58159
    abdorma
    Participant

    Hi Jilly,

    So sorry to hear that your gut was right. Even when you suspect you are going to get bad news you never give up hope that you are wrong.

    My husband’s initial diagnosis was Stage IIIB. His inital melanoma was removed from his chest and four lymph nodes removed in his SNL. Pathology report from his WLE is where he was staged IIIB due to the depth of his tumor, the mitotic rate was 12 (I think), and that he had intransit satellites — melanoma cells trying to get to the lymph system. The first comment from all docs – our own dermatologist, plastic surgeon who did the SNL/WLE, two oncologists we met with and derms at Mayo – was that the best news he had was that there was no lymph node involvement. He went from Feb of 2011 until Dec of 2011 with no other signs of melanoma until a PET scan in Dec of 2011 with a tumor in his lung and a lymph node near his pulmonary artery. So despite the fact, they didn’t get to the lymph system, they obviously were hiding out elsewhere in his body. Three months later, another lymph node and three months after that widespread metastic disease — on his August PET scan, he had seven tumors on his spine alone and so many little white spots on both of his lungs, you couldn’t count them. He has shown remarkable success with Zelboraf though (one lymph node left with melanoma after three months of treatment), but he is BRAF positive.

    We don’t ask about a longterm prognosis because we know that once it metasicizes, you gotta live in the moment and hope for the best. There are many people Stage IV people on this forum who have lived several years (but are actively being treated). The average time Zelboraf works is seven months and then the disease typically progresses and our oncologist reminds us of this at every visit. I was very down about my husband’s chances after his really bad PET scan, but Karen (another wife on this forum) told me not to give up. And she was right. So even though you guys got bad news yesterday, there are likely other options out there for Vern if he has further trouble down the road.

    The reason Catherine is asking about the type of test used to test for the BRAF gene is that there are people who initially tested BRAF negative who were retested and found to be positive with improved testing methods.

    Was there any mention to you guys of any other treatment besides surgery? We have always been offered IPI as a possible systemic treatment instead of surgery. There may be other reasons they want to do surgery if he has had fluid in his abdomen or other complications from his previous infustion, but there may be other treatments he could receive besides surgery.

    Finally, it is none of my business, but is Vern in good health aside from his melanoma troubles? Most of the other treatments have side effects and if he has a compromised immune system, he may not be a candidate for them.

    Certainly wish you both the best!!! Sounds like Verne has a good attitude about all of this and that really helps!

    Keep us posted and see what you can find out about the testing used. It could open lots of doors for Verne.

    ann

    #58160
    Catherine Poole
    Keymaster

    The Cobas test is the newer version of the BRAF testing, what insurance company is refusing payment? I would like to know to understand who may have this problem. The NRAS test is newer still and may give him the option of taking the MEK drug if he is positive. Folks are either BRAF pos. NRAS pos or neither of those. WE find out more every day!

    #58161
    DadZGirl
    Participant

    Hi Jilly,

    My Dad had a bad mole on his back, melanoma it turned out, had WLE done, doc said he was clear. Six months later showed up in his lymph node in his Right groin. He is BRAF negative. He did Ipi successfully, then full femoral dissection on Right groin. Was considered NED for 2 months. Then last August cancer came back in more lymph nodes in Right groin. My Dad has probably made an unpopular choice by saying that’s enough surgeries and treatments for him. He has never been a traveler and doesn’t want to become one now. His health was not good before Melanoma, he also has COPD and generally doesn’t feel well. He was diagnosed Stage IV Dec 2011, had surgery mentioned above May 2012 and has not had any treatment other than palliative radiation in Nov 2012. Amazingly he is still among us and we are all thrilled about that! I tell you all of this to try and encourage you, I don’t think anyone can give you a prognosis or tell you how this is going to go. It’s really tough but somehow you have to make your way forward each day until…

    Everyone’s body reacts differently to the Melanoma and to the treatments so you just kind of fumble along doing the best you can and enjoy as much as you can. There have been so many times in the last year I have thought, “is this it? the end?” and then Dad rallies through it and keeps on going, thankfully.

    Try to remain as positive as you can, it’s ok to have some bad moments but try not to dwell on the negative if you can help it. Educate yourselves and live forward as much as you can. Push for answers and keep on keeping on.

    Will be thinking of you and your family and wishing you best of luck!

    Laura

    #58162
    Jillly
    Participant

    Ann, sounds like your husband has really been through a lot….my thoughts and prayers go out to both of you.

    You’ve mentioned IPI but I don’t know what that is. We did talk about different treatment options and elected not to do Interferon due to the side effects, We felt that Leukine would be his best option at this point.

    Catherine, thanks for the info on the other tests….we will check them out. Medica is our insurance company – just got word today that they received our appeal. Hopefully we will get it resolved in the next few weeks. Not too high on my priority list at the moment!

    Thank you both for the information and encouragement,

    Jillly

    #58163
    Catherine Poole
    Keymaster

    Jilly,

    Leukine, unfortunately was not proven to do what we had hoped in a recent study. I would definitely move on to PD1, Yervoy or Zelboraf. There are plenty of trials to consider too. I would ask for the BRAF test by the name of COBAS for best accuracy. Thanks for letting me know about the insurance issue. Let us know how things work out.

    #58164
    Jillly
    Participant

    Thank you all for your concern and words of encouragement. I have had two doctors tell me that the wife’s intuition is almost always correct. Boy do I hate being right sometimes.

    Our insurance company is Medica; we did receive a letter on Monday stating that they received our appeal and were looking into it. I will check into those other tests that

    you mentioned. Catherine; thank you for the information.

    Other than the cancer, Vern is in excellent health. Before his surgery two years ago the only health issue he ever had was a broken arm when he was in kindergarten! He doesn’t even take any meds other than Tylenol.

    As I said before, he has a great attitude about all this and I think that has been a great help.

    Happy New Year to you all and I will continue to hope and pray for better health for all our loved ones.

    Jillly

    #58165
    Catherine Poole
    Keymaster

    There should be no reason for insurance refusal of this test. The cost is not that much and it is very important for therapy access. let me know about your appeal. I hope things work out and please let us know how we can support you.

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