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January 17, 2013 at 11:06 am #20940
I am a 34 year old mother of two primary school age children. I was diagnosed in late September 2012. I had a full lymph node clearance in my groin and pelvis late October on my right side. I had 12 out of 18 nodes diseased and had a drain in for 8 weeks post surgery. After the removal of the drain I started radiation and am just over half way through a four week radiation schedule.
I have been advised that my only real treatment option after radiation is Interferon. I have read many research items about Interferon and also a few of the posts on this site regarding Interferon. I am interested in your views on the benefits of Interferon given my circumstances. I understand that side effects are intense but I am in this position where I think I need to try anything to even delay any chance of recurrance especially since one of the Dr’s has advised that the site of my primary tumour is in question. A couple of years ago I had an in-situ Melanoma under my right toe. The pathology results from this incision have been retested and confirmed the in-situ diagnosis- the Dr’s has advised he thinks my primary tumour was somewhere else.
The PET scan I had in October found disease only in my groin and pelvic nodes however I am concerned that I am at a higher level of risk now and wont know until my next scan which I have been advised wont be until 4 to 6 weeks after radiation. I am really at a loss. Feel a bit like a ticking time bomb. At this stage my lymphadema is the least of my problems. Although terribly uncomfortable- I am more concerned about being armed with as much information as possible regarding treatment options to fight this disease. Thank you so much for your time and any help or suggestions you may be able to offer.January 17, 2013 at 1:35 pm #58575
I’m so sorry to hear of all the hardship you have endured. Where do you live? I have a feeling not in the U.S.? I would recommend trying to get on the interferon/IPI (Yervoy) trial to get the Yervoy. Yervoy has a better response rate than interferon with far less side effects. If you disease is considered unresectable than you could possibly get either Yervoy or Zelboraf by perscription in the U.S. I would ask they test your tumor tissue for the BRAF mutation as this will open up other therapies for you. Tell us more about where you live and we can help you with some options. You have come to the right place for facts and support.January 17, 2013 at 10:25 pm #58576ChrisssieParticipant
Hi Belinda I am from the UK, I am classed as stage VI, I had a mole removed from my right calf in summer 1993 and then had a wider margin removed a couple of weeks after dx. I then forgot all about. In February 1998 I found a lump in my right groin, following a biopsy it was confirmed as melanoma again. I had a lymph node removal in March and 2 nodes tested positive. I also had a lump on my right knee removed and this was another melanoma.
I commenced one of the early trials for Interferon. I did 4 weeks high dose and then went onto the lower maintenance dose for 11 months. The high dose was very difficult. But when I was on the lower dose maintenance I was able to return to work a couple of days each week. I believe that the results for Interferon are not too positive and that since I had my treatment a number of other therapies are available. Although I have no medical evidence to support it I believe that the boost Interferon gave to my immune system has benefitted me and to date I am still, NED ( no evidence of disease)
I just wanted to share my ( I believe, Positive) story.
Be strong and check out ALL the options available to you.
ChrisssieJanuary 18, 2013 at 10:12 am #58577
I am in Queensland, Australia. At this stage all I have been told about my diagnosis is that I am Stage Three. I have asked if my tissue can be tested for BRAF and the medical oncologist indicated he would talk to me about this some more at my next appointment on the 4th Feb after my radiation has finished. I am in Townsville where there is limited opportunity to seek a second opinion on treatment options however we may travel to Brisbane (1600km’s away) for a second opinion after my treatment cycle if we are still feeling a bit lost. I should note though that I also have a surgeon and a radiation oncolocgist who have been very supportive.
Based on my last PET scan (4 months ago) I dont have another tumour. I dont necessarily trust this result though simply because I dont know what is going on inside of me. My nodes grew remarkably between the scan date and surgery date and were visibly swollen and raised by the time the surgery was done. Earlier on I was only able to feel the one node raised in my groin but by surgery day I could feel half a dozen. Then to find 12 of them were diseased I have always been concerned that there is more disease there that went undetected earlier. I realise that this is a feeling that we all have when we lose control and the scans feel like they are so far apart.
I really appreciate your responses. If Intereferon is all I am offered than I will have a go. I understand it will be brutal but I cant just leave it at this and feel like I am waiting around for a recurrance.January 24, 2013 at 1:39 am #58578cld3Participant
Hello all…I’m new to this site but am very interested in this conversation re. interferon. I just had all nodes removed from under my right arm…5 positive…stage three…primary on my back 2008. I understand that yervoy is a better option than interferon, but every trial I’ve tried to enter won’t take me…I was diagnosed with MS in 2011. I’m told that interferon is my only option. Any input would be helpful…are there more options? Thanks in advance for your help.January 24, 2013 at 4:01 pm #58579 You might try to find a MageA3 trial, last time I looked it was available at University of Virginia. Our take on interferon from looking at the studies is that it may possibly increase the time before a recurrence happens in 8% of patients. It does NOT increase overall survival according to the Amercan Society of Clinical Oncology. So you do go through a year of feeling pretty debilitated and your payback is small. Top institutions in the U.S., Sloan Kettering, Hopkins, UPENN, do not prescribe interferon for lack of benefit. Cost is high too. If you have any history of depression, do not take interferon. For some it has had permanent side effects that they must live with as well. Unfortunately, in the U.S., it is still the only approved drug for stage 3 disease, but it looks like there is change in the wind! Yervoy and MageA3 are promising.January 25, 2013 at 2:40 pm #58580LinnyParticipantCatherine Poole wrote:
… but it looks like there is change in the wind! Yervoy and MageA3 are promising.
What is the latest scoop that you’ve heard about these drugs for Stage III folks?
At my last visit I asked Dr. Scharfmann how the MAGE trial was going and all he was able to tell me was that everyone was doing well, including those who were on the placebo. This is a double blind study so he doesn’t know if I’m on the drug or the placebo.
When you talk about Yervoy for Stage III, is it only for patients who are Stage IIIC unresectable?January 25, 2013 at 3:58 pm #58581LinnyParticipantcld3 wrote:
Hello all…I’m new to this site but am very interested in this conversation re. interferon. I just had all nodes removed from under my right arm…5 positive…stage three…primary on my back 2008. I understand that yervoy is a better option than interferon, but every trial I’ve tried to enter won’t take me…I was diagnosed with MS in 2011. I’m told that interferon is my only option. Any input would be helpful…are there more options? Thanks in advance for your help.
Are you 100% sure that you have MS and not Lyme Disease? Lyme Disease is all too frequently misdiagnosed as MS. Not many doctors are Lyme Literate and will diagnose a patient with something like MS based on a negative Lyme test result. Test results for Lyme are not reliable. The best type of
to determine whether or not you have MS or Lyme is one who’s Lyme literate. doctor
What’s all this have to do with melanoma? If you really have Lyme rather than MS, it should open you up to more melanoma treatment options. It may be worth your while to find out.
In the melanoma world, we often recommend to folks that they seek out an oncologist who specializes in melanoma or head to a melanoma center of excellence. These doctors are more likely to be familiar with the nuances of this disease and how to best treat it. Ditto for the world of Lyme Disease.January 25, 2013 at 8:40 pm #58582
I think eventually we will have both Yervoy and the BRAF drugs for stage III. But it takes a long time! Right now they are only available for unresectable III. Fingers crossed!January 26, 2013 at 5:31 am #58583 Hi Catherine,
Can I ask you your opinion, if I don’t have access to either Yervoy or any trials – do you think I should consider declining the Interferon?
BelindaJanuary 26, 2013 at 1:49 pm #58584
That is going to be your personal choice. I can give my opinion on interferon from the studies and the American Society of Clinical Oncology (ASCO). The last study showed that in 8% of patients who did interferon, the recurrence time was up to a year longer than those who didn’t do it. ASCO stated last year that while there might be delay in recurrence, (keep in mind you are on interferon for one year and lose that year of quality of life) there is NO overall survival advantage. So you will not live longer because of the interferon. If you have any history of depression, I would not do it because it can make that much worse. I do believe it will be a drug of the past when the others get approved, but it is a slow process! Keeping your own immune system strong through healthy living habits and watching your body carefully for an changes heralding a recurrence is a good option too. Let us know what you decide as we are here to support you no matter your choice.January 27, 2013 at 5:47 pm #58585judgar2012Participant
I would to say something about interferon. Like Catherine said it is your choice to do it or not. My Husband was on it for 1 year. Yes it was very hard for him. He did work everyday. But his thought was if I did not do it and it came back He did not do all he could do. Yes the chances they give you are small but he thought it was better than none.
He had nodular melanoma and it was 7.5 deep. So it was deep. It was in his lymp nodes too. So now for 3 years he has been clear. If you go on it you make sure you do what they say about the mortin and tyenol and drink lots and lots of water. So Yes it is your choice. Good Luck. We know your mind is spinning.January 29, 2013 at 2:56 pm #58586GillyParticipant
I know the dilema you are in – it has to be your choice – my husband was considered high risk or recurrence – we were offered Interferon after his wide excision but declined – he had nodal recurrences a year later -but we are still SO glad not to have done interferon – if you can get on a schedule of regular scans and checks and remain proactive seeing what your options are if you do progress then that is also a great option – my hubby is stage 4 now but I am so grateful that he had a full year feeling well and filling his days with us – it is our choice but we didn’t want a treatment that would have worse side effects than his then quality of life – all the best in your decision xx
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