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October 23, 2012 at 10:13 am #20700patiParticipant
So I have not posted in a long while but I am doing well.
I wanted to let people know that I love this community but since Quentin and Taron and Peter and Peter died (and others like Ian) it has been hard for me to come here and interact. We were a “cohort/gang” of sorts and I guess I have some survivor guilt or just pain from knowing they are gone…we had so much fun!
After my last scan in August showing PD after a trial combining Yervoy and DC I have been lucky that I could enter the MERCK anti-PD1 trial at UCLA. I have done 2 infusions and- thanks to miracle worker Catherine Poole to whom I owe so much…..- I will be able to continue the same trial but in Paris! So my silence has been due more because am barely surviving continuing to work, be a mum, advocacy and surviving a new trial logistics (with long hours of traveling, gathering funds, etc)
As for the status of the melanoma itself, who knows, the PD since august 10 to now October 23 is not something I can yet evaluate from my axilla palpable nodules, they got bigger then slowed down since the anti-PD1 first infusion and even got smaller. I did get interesting immune response after first infusion with cold like symptoms and palpable tumors becoming engorged, hot, much larger, painful, then they calmed down and became a bit smaller – yet you know it is a hard call to know how things are really going “objectively” until we hit the next scan! I know as of the entry to anti-PD1 scan was a shock as the CT report was sooo detailed: so I now that I have mets on left axilla, left psoas region (these I knew) but also on abdomen soft tissue and small mets in both lungs. It was a cold shower.
As to how I physically feel? I guess fine but tired of all the ups and downs. Today I feel really good as I just had a grand belgian chocolate while getting some sun light touch my skin while I type this. For today I am ok
, I an “in” love with life but can accept all that goes with it to.
Hope you are all all best as you can for today,
PatiOctober 23, 2012 at 11:35 am #57071Catherine PooleKeymaster
So happy to have you back! And wish I could be there to enjoy the Belgian chocolate and sunshine with you.October 23, 2012 at 12:50 pm #57072lak1Participant Dear Pati,
It is good to hear from you. I am so sorry you are troubled but glad that you have access to PD1.
I too miss Taron.
I too feel the survivor guilt.
My scans last week showed no evidence of disease so somehow I have managed to become disease free and stable since Feb 2011.
Really I would like ipi maintenance – it did not seem to work on measurable disease in me but has stopped what ever was next from appearing yet. I realise my immune system is becoming more normal still have not had a cold since ipi and halo s still I think are increasing. My tan- if one can call it that is very streaked with blotchy white areas on arms and neck. Might have some developing on face but too soon to tell.
I do hope PD1 works for you.
LesleyOctober 23, 2012 at 3:21 pm #57073JonathanParticipant
It is so good to hear your very hopeful news, and that you’ll be able to continue the anti-PD1 treatment in Paris. My understanding is that tiredness is maybe the most common side-effect.
I can identify with a great deal of what you say. We have made so many close friends on the forum over the past 2 years who are no longer with us that it is sometimes hard to reconnect. But here we, and others, are! Also, it’s “interesting” but you and I have almost identical patterns of mets – my biggest one was on the psoas, plus the hylar region adjacent to my lungs, and one in my left axilla (plus the 2 small brain mets). My current situation is actually quite good – those mets all seem to have shrunk or are stable, and after a nasty Strep B infection (likely unrelated), I’m back doing fall clean-up in the yard and we’re biking 3 or 4 times a week (not too far, but it’s enough). Next scans in mid-November, so I’ll undoubtedly get anxious when that time gets close, but for now, the disease has been put on the back burner of my mind. Just had a nice time with my 40 year old daughter, pregnant for the first time (5 months) and enjoying it all.
With warmest best wishes,
JonathanOctober 24, 2012 at 12:39 am #57074Shirley ZParticipant
So good to log on and see an update from you. Its so amazing to me how much you continue to accomplish while battling this disease.
I know I am probably repeating myself, but amazing is truly the word that comes to mind when I think of you.
Being a stage IIIC for 6yrs has also brought a lot of guilt at times. I have been on this forum a long time. My primary was so deep and my original prognosis so poor. Its hard to lose members that have become like a second family to you. When my kids started having health problems I really became overwhelmed.
Catherine has been wonderful to us also. I know I have been sparse on the forum lately, but she still checks on me and understands when sometimes I just need a break. We all do at times!
Wishing you many beautiful, happy days.
Shirley ZOctober 24, 2012 at 12:46 am #57075Shirley ZParticipant
I’ll bet you can’t wait for that new grandchild. Congratulations!
Grandchildren are wonderful and the joy they bring you is immeasureable.
Sounds like you are still going strong as well.
Hate to repeat the word amazing. We’ll just call you remarkable!
Shirley ZOctober 25, 2012 at 9:32 pm #57076HeinParticipant
So nice to see you back here. I was really worried but now I understand you had a lot going on. The tiredness, so I was told, is a sign that your immunesystem is fighting extremely hard and that was in my case always a possitive sign.
I know how hard it is to get to know new friends and lose them within a few months/years. I choose to use my history to bring attention to melanoma and it´s a real good feeling giving people hope and being able to give them some kind of guidence, advice or peace of mind. But on the other side it´s so hard building up these very personal relationships, knowing how extremely lucky I was and the odds for these newcome
dear friends. But I never was one to opt out the most easy way, so why start now. At least I know I can contribute in buying people time and giving them back their will to live and enjoy life as much as possible.
And if you need a few days of rest or change of scenery, my offer to you is still on the table.
Keep up your spirit!
HeinOctober 26, 2012 at 7:18 pm #57077Catherine PooleKeymaster
Well said Hein. You are so kind. I agree, and Pati has been in a whirlwind of activity that would make anyone exhausted! I hope her immune system keeps revving up!October 27, 2012 at 12:04 pm #57078alankravitzParticipant Welcome back, it’s good to hear that you are continuing the fight against melanoma for yourself and for all of us; the survivors, those who have lost the struggle, and the millions worldwide, who through prevention and treatment, will become survivors. My continued best wishes to you, your family and your community.
AlanNovember 15, 2012 at 6:28 pm #57079lisaberryParticipant
Thanks for sharing your experience. I’m curious to know how you are doing now?
Also, for how long did the tumors grow after the first infusion? How long did it take before you noticed them shrinking?
Sending you lots of positive energy for a clean PET!
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