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April 23, 2013 at 1:11 am #21211LynneParticipant
I was diagnosed on August 24, 2011 and went on one round of Yervoy then went on a PD-1 for a year and then was able to extend it for another six months (until August 2013) I have scans every three months which show stability, however, I feel once I go off the PD-1 I will get worse. It consumes me everyday and no one can give me any information of what my future might look like. I have very little side effects, mostly just being tired and most people say “well you look good” but inside I’m just so scared and wonder if anyone else can relate? I can say I feel good most days and will sometimes wonder if I really do have this disease or it just a mistake. Last summer I stayed out of the sun and got very lonely doing so….everyone was at the beach. I want to be healthy and live a long life but just can’t get past the unknown future. Any advice? LynneApril 23, 2013 at 1:06 pm #60207G1SamsaParticipant I am also in an anti-pd1 trial– and have reached the “maintenance phase”. Like you, I appear stable and am grateful to be one of those showing response to the drug. I have not discussed whether they envision some post-maintenance treatment ( I still have another 12 months where I will be receiving a widely spaced infusions), but my Dr. has indicated that they believe the Anti-PD-1 response to be durable. (That the maintenance phase may not be critical). That would be fantastic,but I am hoping that the timing of the FDA approvals will place these drugs on the market for regular prescribed boosters. I don’t like performing without a net!April 23, 2013 at 2:23 pm #60208AnonymousGuest Lynne and G1Samsa, welcome to this site and this forum. There are a lot of wonderful people here to offer assistance and encouragement.
There is much hope and grace now available for melanoma victims now than ever before with more on the way.
You both seem to now have a chronic condition. And that, warriors, is a vast improvement over what could be expected with this disease just a few years ago. That’s the state my wife Rachel and I were hoping to achieve. That’s the first state the medical community wants to achieve. A chronic disease is just that, chronic. It’s not life threatening. OMG, what a wonderful position to be in with this lousy disease. And be assurred, just like any other chronic disease, you will get the treatments you need to keep it chronic. And then KILL IT someday.
Curious, can you describe your stability? Importantly, the biological activity from PET results.
I know it’s tough. You probably wake up early some mornings just consumed with doubt and worry. We fear the unknown. That’s perfectly normal. It’s scary, but hang in there and try to take comfort in the fact that you’re at a very good spot indeed.
JeffApril 23, 2013 at 3:57 pm #60209G1SamsaParticipant
Jeff– stability is my term and relates to my perceived status (how I feel together with objective scan results) over time. I am always wary that the term my be illusory and when I least expect it I will again be toppled. I hope i don’t risk jinxing my “stability” by drawing attention to it. My current journey started in September2012–when I was diagnosed with “enumerable” tumors throughout my body –organs and bones. (I had a shallow melanoma removed from my scalp in 2001–you’ve heard the story). I was lucky to be accepted into a trial almost immediately (Anti-PD-1/Ipi) which has resulted in a reduced cancer presence by @ 50 percent according to the scans by the end of January. I have pretty-much remained the same–not NED but at a tolerable level– stability or false security? I move slowly and still use pain meds–but feel so much better than last October –so I’ve stopped complaining.April 23, 2013 at 8:38 pm #60210DadZGirlParticipant I’m sorry that anyone has to deal with this disease. About the “uncertain future” feeling – not one of us is guaranteed another day and as yucky as it sounds, it’s just life. We have to live our lives, make future plans and be part of an active lifestyle and only adapt when necessary. If you are currently feeling well participate in everything you can and want to. Go to the beach, but use an umbrella, sunscreen, hat, long sleeves, I know it’s not the same as before, but you can go just adapt to a new way of going to the beach. If you want to take a trip, make your plans now and take your trip. Go ahead and plan as far ahead as you want. Don’t stop planning, don’t stop living, don’t lose hope. Don’t let Melanoma take anything more from you than it already has. Just my two cents.
Blessings to all of you.April 23, 2013 at 9:20 pm #60211NZjanetParticipant
Yes, I can relate. I’m told all the time how well I look, which sometimes makes me feel like a fraud!! I’ve been off work for almost a year on 90% pay which has been fantastic as far as concentrating on ‘ME’. However, that will soon end, and the stresses involved in my job will prohibit me from going back for awhile. I am presently on a Zelboraf trial with varying side effects, including a ‘Zel’ dull brain!! It has taken me a long time to bring myself into the present, and ‘live my life’. I began doing that after a dear friend suggested I plan 3 things to look forward to, and if I managed 1 or even 2 of them it would improve my day to day living. That was at the end of last year with a very bad lung. That was liberating. In the end I managed all 3…
After starting the drug trial earlier this year, and dealing with major toxicity and varying debilitating side effects, life was becoming a drag. I too love going to the beach, and especially love swimming in the sea. We (I live in the Southern Hemisphere) had our best summer in years, and I missed it due to the sun sensitivity caused by Zelboraf. After my dose was reduced, and the side effects eased up, I decided it was time to ‘grab’ the opportunities again. I went to a music festival (and camped….), I swam in the sea on my birthday with a rash top and 70+ sun screen, a beach umbrella to get changed under, and a cloth hat attached while I was in the sea!! Soon after, I managed a wedding, saw Wilco perform, have visited both ends of my country, and spent precious time with friends and family. It has been wonderful, joyful and more real than ever before.
I have found that as long as people understand what is happening inside, they are usually very accommodating if you need to rest, or cancel at short notice. I hope you are surrounded by understanding friends and family.
It’s your time, enjoy it as much as you can. Another friend reminds me, when I get scared of the future, that we could be hit by a bus tomorrow…..
All the best Lynne,
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