CancerCompass message board discussion started by clover77 on 2/25/2008 http://www.cancercompass.com/message-board/message/all,21309,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband and I were married in June 2007 and he was diagnosed with melanoma only a few months later in September.  He had a mole on the back of his neck that I had been bugging him about getting checked out and like a lot of men he had the attitude that it is just a mole and put off going to a doctor. I made an appointment for him and convinced him to go. That doctor sent him to a surgeon to have the mole removed, it came back as Melanoma.  We were then sent to the University of Penn for a wide excission and sentinal node biopsy.  I think we both thaught "ok, so we go get this done and no big deal".  Well one of the lymph nodes came back with a little bit of melanoma in it.  He was scheduled for another surgery to remove more lymph nodes from that area.  They removed 50 lymph nodes and thank God they all came back with no signs of Melanoma. So, then I think we both thaught "whew, that is great, now we can go back to normal life, just get checked out every now and then, no big deal". Then the oncologist wants to see us in her office outside of the normal setting within the pigmented leasion group at U Penn. She is now  is giving us three options.1) Only strict observation.  See her every 3 months, the pigmented leasion group every 6 months and a regular dermatologist every 6 months.  Have regular PET scens, etc.... - She is not really recomending this because he is so young and is otherwise very healthy and should respond well to any other therapies. 2) Interferon - 1 month of high dose through the vain and 11 months give shots himself under the skin. 3) Participate in one of a number of clinical trials and if we chose this rout we would need to have a blood test completed to determine his tishoe type.  What we decided at the visit was that we would go ahead and have the bloodwork done to determine if #3 is even an option. However, after more thought, neither one of us really like the idea of him being a lab rat.  I understand that clinical trials could be great and they have to have some basis and sound testing to even get to the point of a clinical trial, but still don't like that idea of him being part of a test.  I want something that I know has been proven to do something.  I have done some reading on interferon and have seen good and bad things on it.  But it seems to be something that at least has some evidence to say that it gives a better chance than doing nothing. It is really hard to accept the fact that he may be sick for a year because of this though.  Even through this surgeries, he has been fairly healthy and able to be up and doing things.  He may need more time off of work, which he does not have (he has already been having to take time off without pay and his current job is not at all supportive).  The hospital bills are pooring in becuase he has really high co-pays.  I am working two jobs just to make ends meet and it is going to be hard for me to be able to be home while he is going through the treatment. I guess I just want to know from people who have been through this whether it seems really worth it.  If it is giving him a better chance at being around longer, than I want to do it no matter how hard it is.  Sorry this was so long. clover77 Mon, 25 Feb 2008 00:00:00 GMT these are tough decisions, no doubt.  He has stage III melanoma because of the one lymph node.  Here is the problem.  With surgery alone, about 60 % of patients will have their melanoma recurr.  Once this happens, survival is poor.  Interferon will reduce this recurrence rate by 10-15%.  Not much you might say given the year of treatment and the side effects of the drug, but if he is young, I would want to do anything to improve his chances.   It is good that he had only one + node instead of several, but he still has a fairly high chance of recurrence without treatment. Oncrx Mon, 25 Feb 2008 00:00:00 GMT He's young, healthy, strong and wants to live a long time w/ his new bride. I'd go to the best place in the country as rated by US News and Reports. That would be MD Anderson in Houston. If not them then search out. US News ranked the top ten for cancer in the country. If you have a fax, I can send you the list. I would then take all my records to them, they'll put him through the ringer and will make a solid recomendation. In my mind. Why screw around when you have so much going for you? Go to the best place. If there are options, I'd have them hit me w/ everything they got. A few months of pain and suffering that may translate to a long life is well worth it. When my cancer was diagnosed. I went to MD Anderson, put my life in their hands, told them to treat me like their brother and go for it. Don't cut any corners. I'm 51, just retired and have many plans for the next 20 years. I'm dealing with the few months of hell right now. But it'll pay off.Good luck and God bless.Rick rick51 Mon, 25 Feb 2008 00:00:00 GMT I have heard nothing but good things about the doctors at U Penn and have had a great experience with them.  Do you really think we need to go elsewhere?  It seems that they are up on the current research and they ahve specialists in this area.  clover77 Mon, 25 Feb 2008 00:00:00 GMT There are three kinds of clinical trials.  In the 3rd type of clinical trial, you are not being a lab rat.  You are involved in a treatment that has already been found to be valid and successful, but trial's purpose is to see if it's BETTER than the present standard treatment.  However, it is already thought to be SUCCESSFUL.  The only question is if it's BETTER than the current STANDARD TREATMENT, and how much better, if that can be determined. Don't be afraid of being a lab rat... but do find out which level trial it is (one, two or three)... Susan_b_anthony Mon, 25 Feb 2008 00:00:00 GMT So sorry you find yourself in this situation.  Melanoma is so un-predictable.  Although I agree with all that has been said, I wanted to mention that even if you decide to go with the trial, sometimes, you cannot qualify based on the blood work (tissue typing).  My son decided against interferon and was accepted into a trial at NCI, only to find out the day before he was to begin, that the bood work came back with a factor that dis-qualified him.  He has chosen to do only supplements for now to strengthen the immune system.  He did not feel the interferon treatment was statistically promising enough to endure the year of treatment.  I think it is fair to say that there are several trials that have shown much promise with good results as previous poster said.  The interferon could delay recurrance but not improve overall survival according to statistics.Only God knows, really, what each will respond to.  Hope you can put it in His hands.Good luck with this ever so hard decision.Mrs. C Mrs. c Wed, 27 Feb 2008 00:00:00 GMT I would disagree with the statement that IFN has no impact on OS.  Studies have shown an increase in disease free survival AND overall survival.Kirkwood JM, Strawderman MH, Ernstoff MS, et al.: Interferon alfa-2b adjuvant therapy of high-risk resected cutaneous melanoma: the Eastern Cooperative Oncology Group Trial EST 1684. J Clin Oncol 14 (1): 7-17, 1996. Oncrx Wed, 27 Feb 2008 00:00:00 GMT Oh!Sorry if I misquoted something I thought I understood correctly from research I've done.  I thought that there were just as many that do recur as those who don't with IFN.  So of course it seems to have some impact with some people.  I guess my point was that you can't consider IFN to be a cure since there is no cure yet. Was not trying to discourage the poster from doing it.  My apologies if that's what it looked like.Mrs. COn 2/27/2008 Oncrx wrote:I would disagree with the statement that IFN has no impact on OS.  Studies have shown an increase in disease free survival AND overall survival.Kirkwood JM, Strawderman MH, Ernstoff MS, et al.: Interferon alfa-2b adjuvant therapy of high-risk resected cutaneous melanoma: the Eastern Cooperative Oncology Group Trial EST 1684. J Clin Oncol 14 (1): 7-17, 1996.    Mrs. c Wed, 27 Feb 2008 00:00:00 GMT No problem, just wanted to clarify that OS can be increased.  In this study I think it was a 12 month increase.  It is true, it is not a cure.  The benefits are rather small , the side effects are rather severe and the treatment is rather long.  I think you could make good arguements either way. Oncrx Wed, 27 Feb 2008 00:00:00 GMT In October of 2007 my husband had a mole on his arm removed and it came back as melanoma.  His dermatologist sent us to MD Anderson in Houston.   I simply can not say enough good things about the entire hospital, from the doctors to the parking lot attendants.  Truly, truly Angels in human form. Although his surgery outcome was wonderful (NED in lymph nodes) he still signed up for several clinical trials - none of which include any actual medications.  MDA requires us to come back for full check ups (Blood, X-Ray etc. full body scans) every three months for two years. Runabout Wed, 27 Feb 2008 00:00:00 GMT Are you quoting  data from 1996? mother3 Sun, 02 Mar 2008 00:00:00 GMT Sorry to hear of your hardship especially at this what's supposed to be lovely time of your lives. Why don't you go for another opinion? Sure we here are all good sounding boards and have similar experiences but another sound opinion is in order. If you are close to U of P how far are you from NY? Are you in Pittsburgh or Philly. Because if you're in Philly you are close to NY and Sloan Kettering and if you're in Pitt you can go to University or Cleveland Clinic in Cleveland. Once you have two or three expert opinions you can make an educated decision. Good luck and here's hoping to hear only good things. Bayla Sun, 02 Mar 2008 00:00:00 GMT  On 2/25/2008 clover77 wrote:My husband and I were married in June 2007 and he was diagnosed with melanoma only a few months later in September.  He had a mole on the back of his neck that I had been bugging him about getting checked out and like a lot of men he had the attitude that it is just a mole and put off going to a doctor. I made an appointment for him and convinced him to go. That doctor sent him to a surgeon to have the mole removed, it came back as Melanoma.  We were then sent to the University of Penn for a wide excission and sentinal node biopsy.  I think we both thaught "ok, so we go get this done and no big deal".  Well one of the lymph nodes came back with a little bit of melanoma in it.  He was scheduled for another surgery to remove more lymph nodes from that area.  They removed 50 lymph nodes and thank God they all came back with no signs of Melanoma. So, then I think we both thaught "whew, that is great, now we can go back to normal life, just get checked out every now and then, no big deal". Then the oncologist wants to see us in her office outside of the normal setting within the pigmented leasion group at U Penn. She is now  is giving us three options.1) Only strict observation.  See her every 3 months, the pigmented leasion group every 6 months and a regular dermatologist every 6 months.  Have regular PET scens, etc.... - She is not really recomending this because he is so young and is otherwise very healthy and should respond well to any other therapies. 2) Interferon - 1 month of high dose through the vain and 11 months give shots himself under the skin. 3) Participate in one of a number of clinical trials and if we chose this rout we would need to have a blood test completed to determine his tishoe type.  What we decided at the visit was that we would go ahead and have the bloodwork done to determine if #3 is even an option. However, after more thought, neither one of us really like the idea of him being a lab rat.  I understand that clinical trials could be great and they have to have some basis and sound testing to even get to the point of a clinical trial, but still don't like that idea of him being part of a test.  I want something that I know has been proven to do something.  I have done some reading on interferon and have seen good and bad things on it.  But it seems to be something that at least has some evidence to say that it gives a better chance than doing nothing. It is really hard to accept the fact that he may be sick for a year because of this though.  Even through this surgeries, he has been fairly healthy and able to be up and doing things.  He may need more time off of work, which he does not have (he has already been having to take time off without pay and his current job is not at all supportive).  The hospital bills are pooring in becuase he has really high co-pays.  I am working two jobs just to make ends meet and it is going to be hard for me to be able to be home while he is going through the treatment. I guess I just want to know from people who have been through this whether it seems really worth it.  If it is giving him a better chance at being around longer, than I want to do it no matter how hard it is.  Sorry this was so long. Hello, My husband had a similar situation 3 years ago.  He had a mole removed from his shoulder and was determined as Melanoma (stage 4 according to the size).  He had all surgeries and lymph node checks and all was clear.  We thought great, no problem.  His Oncologist did suggested he do the Interferon and he did.  His side effects were not to bad but he was a big guy (6'1" - 250 pounds) to begin with and therefore the weight loss and fatigue did not look as bad on him.  He started in May and was able to coach High School football by the fall.  And he worked the whole time.He is still with us today but not in as god of shape.  The Melanoma came back a year later with one tumor in his lung.  We had that surgically removed and he was clear for another year until multiple tumors came in his lung.  He them tried Temodar.  It shrunk some tumors but others continued to grow.  He then tried Temodar (Chemo Pill) and Tomotherapy together and it did a remarkable job.   (Tomotherapy is a special type of radiation therapy).  All this going on and he still continued to work and coach football.   At this point he has been slowed do to an infection in his lung (pneumonia) and a heart attack all due to the treatments.  He has dropped to 190 pounds but is getting a little stronger every day.  He has a few tumors on his skin which will probably be treated with radiation and after that he will be trying some other form of Chemo.   I guess I am telling you this because we checked into MD Anderson and The Cancer Treatment Centers of America (he doctors at UW Wisconsin) and they all recommended the Temodar because it really is the only treatment for Melanoma.  Otherwise the only choice is which hospitals are conducting what trials and which one fits you the best.  I pray every day that he makes it past the 5 year mark which the stats say is only 10% of cases.  We have a 5 year old daughter which we waited a long time for (12 years) and I am hoping GOD will not take him away before she has a chance to grow up.  You can send all your records to MD Anderson without actually going there and they will review your case and let you know what they think.  This is what we did.  We live in Illinois and it made more sense than spending money on trips all over the US to hear the same thing. God Bless and I hope all works out for you.Kim in Illinois Kim T Thu, 13 Mar 2008 00:00:00 GMT Treat him.  He is young and needs it now while his body can take it.  I chose not to treat and now I am at a stage 4 wondering what my next step is.  Do the interferon or a trial, but do not let it go without treatment.  gmfloyd5 Sat, 12 Apr 2008 00:00:00 GMT Wow, well it didn't work for us.  Melinda went through the year long treatment as you described.  The original site was 6mm deep Clarks level 5 ulcerated on her back.  She couldn't get a break and now has had a middle lobectomy of her right lung due to distant metastis.  Originally she was offered an experimental cocktails of 5 drugs including Interferon, IL2, DITC and a couple others they didn't say.  It meant a week in the hospital then three weeks off for three cycles.  Very hard on the body.  The oncologist wasn't able to predict odds so she opted for the standard Interferon treatment.  This oncology groups claims many years of experience with a 22% "curative" rate in cases like these.  What ever you decide, it can't be easy because if it doesn't work out you will want to say what if I tried the other thing.  You just can't predict what Melanoma will do but you can put obstacles in its way.  At leas that is the way I see it.  After the last surgery the next obstacle will be Leukine.  If more tumors pop up there will be other obstacles we can still put up.  Best of luck and blessings to you and yours. clintandmelinda Tue, 22 Jul 2008 00:00:00 GMT I would like to add that she also had one sentinal node positive only and it was microscopic at that.  All others negative.  The deeper the mole the more likely vascular invasion which means it can spread through the blood stream.  Her lung metastis developed through the blood stream and bypassed the lymph system.  It will seed where the blood slows down enough for it to take hold.  Interferon may help the immune system beat down any distant metastis but it does take a toll on a person.  It will be hard to go to work and remain energetic.  The attempt may be worth it.  Some oncologists feel the first month is the most beneficial and the other 11 have a dimished return on investment.  It is still be debated but you may want to discuss this with your doctor.  One month with the PICC line injections is tough but the 11 months self injections (while less harsh) wore Melinda down.  Big men have been known to quit.  Different for everyone. This is a very serious disease and I would hope his employer would be more supportive.  I guess that depends on the size of the business and their ability to help out.  I hope things work out for all of you.    clintandmelinda Tue, 22 Jul 2008 00:00:00 GMT