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Deciding On Treatment

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Subject: deciding on treatment
Date: 02/25/2008

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.

Doctor / Nurse
Doctor / Nurse
Oncrx
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Subject: RE: deciding on treatment
Date: 02/25/2008

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.

Subject: RE: deciding on treatment
Date: 02/25/2008

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

Subject: RE: deciding on treatment
Date: 02/25/2008

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. 

Patient
Patient
Susan_b_anthony
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Subject: RE: deciding on treatment
Date: 02/25/2008
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)...
Subject: RE: deciding on treatment
Date: 02/27/2008

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

Doctor / Nurse
Doctor / Nurse
Oncrx
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Subject: RE: deciding on treatment
Date: 02/27/2008

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.

  1. 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.
Subject: RE: deciding on treatment
Date: 02/27/2008

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. C

On 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.

  1. 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.

 

 

Doctor / Nurse
Doctor / Nurse
Oncrx
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Subject: RE: deciding on treatment
Date: 02/27/2008
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.
Subject: RE: deciding on treatment
Date: 02/27/2008

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.

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