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April 23, 2013 at 10:47 pm #21214
I had my 1st dose of Ippi yesterday. I finally got the go ahead from the Oncologist at Georgetown after seeing a Rheumatologist there. The visit was a waste of time because he had no idea why I was there and had never even heard of Ippi while my own Rhematologist had researched and ok’d it despite my lupus history. The melanoma center was critical about my local oncologist who had started me on Zelboraf saying it was overkill but at the same time were still on the fence about Ippi. It was even suggested that watch and ait was an option. No way is watching and waiting acceptable when my scans were showing progression. So there is a little tension with my local oncologist and the melanoma center but I believe my local Onc was doing the right thing given that the experts were not happy because Ippi was never studied with autoimmune patients. I told my local Onc that I make my own decisions based on my own research and their input. So I hope this decision doesn’t come back to bite me in the …..! I have to have bloodwork and urine test every week to make sure liver function and lupus remains stable. I hope my experience (good or bad) will help others in the future. It is unknown how my body will react but the Yervoy Rep is involved in my case and is anxious to know how things go.
Mary SueApril 23, 2013 at 11:47 pm #60223LynneParticipant
Hi, I have Stage IV Melanoma and had Ippi treatment last year every three weeks for four rounds. I didn’t have any side effects but no changes in my condition. I am now on a clinical trial of PD-1. I wish you luck.April 24, 2013 at 3:11 am #60224dkmcParticipant Good luck! New ground to cover with your lupus but I agree worth trying! Don is a diabetic so it is interesting to see how the treatment affect that also. Ipi was such a good experience for him I hope it works well for you too!!! Maybe we will find it helps your auto immune disease too…now wouldn’t that be something! No wonder the rep is interested.
Wishing you the best, KarenApril 24, 2013 at 3:25 am #60225
Oh how I wish for a crystal ball. I only wish to see about a year. I am having trouble making future plans. My husbands family is planning a large get together at the beach at the end of June and I can’t seem to commit. How will I feel? Will I end up back on Zelboraf with its sun exposure problems? I have trouble with serious conversations with my husband but he was away and we had our 1st serious talk about my future on the phone. If I try to to talk with him face to face I can see the pain in his face and I break down. We have decided to seek counseling at the local cancer center. I am not sçared for myself but have visions of the future without me and how sad my husband,kids and grandkids will be. We also need help with how to handle things with our 11 yr old grandson who lives with us along with his mother. I recently went away for 2 weeks and my grandson ran up to me when I came home and said”I missed you so much. Please don’t ever go away again”. So counseling is definitely needed. I probably should have done this a long time ago. I will post how it goes. Good luck with your current treatment.
Mary SueApril 24, 2013 at 11:18 am #60226Hstevens0072Participant
Hi Mary Sue,
I wish you luck with your decision to seek counseling for all of you. I have had very limited success. I recently, just last night, started in a support group for patients only. There is a separate group for caregivers but none for all of us together. My daughters are24, 19 and 16, they are not really caregivers. I live in central MA and haven’t found anything at my local cancer centers or even in Boston other than the support group that meets once a month. I’m looking into private practice but I’m having no success finding someone who has experience with a stage four diagnosis. I’ve even checked in with our local hospice organizations and they don’t have someone to recommend either! I wish there was someone to help us deal with the emotional side of this. Meanwhile we continue to stick our heads in the sand and attempt to carry on because talking about it is too painful.
Please let us know how you do with this. Maybe I can pick up some pointers from you
Ps I just finished my fourth infusion of Ipilimumab yesterday. So far it’s been fine, no side effects. I did change my diet to support my liver function – no processed food, no alcohol and no refined sugar, added fresh veg like broccoli and cauliflower, flax seed lean proteins. Not sure if its helping but it can’t hurt, right?April 24, 2013 at 1:24 pm #60227Catherine PooleKeymaster
Most big cancer centers, I know Mass General in Boston, have oncologic psychiatry centers. I would check with who they recommend, possibly close to home. Individual therapy plus group support here can really help. Most support groups for melanoma have had a hard time sticking around for many reasons. Let us know how things go Mary Sue!April 24, 2013 at 2:40 pm #60228erinmay22Participant Best of luck with the ipi! I didn’t really have any side effects. I got itchy but no major rash like the Zelboraf. I did after the 4th dose get some tummy issues but that lasted about a week and my onc was quick to prescribe a steriod for that (one specific for the intestines vs a general one – I’ll have to look up the name). He said to basically keep it on me and ready! but that lasted only about a week. Then I got a rash on my scalp and it was breaking out really bad.
As you know your first 12 week scans can sometimes be worse before they are better. That happen with me. But I was still able to start up in the pd1 trial.
Thoughts and prayers your way!
ErinApril 24, 2013 at 4:37 pm #60229
My local cancer center had nothing but group meetings and I think we need 1:1 counseling at this time. I then called a larger cancer center in Northern Virginia nearer to D. C. and they offer private short time counseling for free so I left a message. I’ll post what happens with this. I would advise to try another cancer center if you don’t get what you need the first time around.
Mary SueApril 24, 2013 at 9:03 pm #60230Shirley ZParticipant
Hi Mary Sue,
Its so sad reading the heartbreak that you and your family are going through. I know how much your family depends on you as their stronghold.
I hope and pray that the ipi will bring you positive, long lasting results. You so deserve it! You are such a kind and giving person. Take care of yourself my friend.
Shirley ZApril 25, 2013 at 3:54 am #60231
Thanks Erin and Shirley. It means a lot to have support from my cyber friends! I think we all need the support from someone who knows what we go through. Thanks for being there.
Mary SueApril 27, 2013 at 6:11 am #60232DianapParticipant
Not sure what to write this time it usually flows out of me but I think it is your young children, some the same age as my youngest Lewis 23, having to deal with so much. I know there are even younger families on this forum and it breaks my heart. I usually find it very difficult to read and I wonder where the strength comes from, but it comes from them and wanting to see them grow up and spend quality time with all the family.
Our family has been stronger and better people due to this disease, but it takes no prisoners and to ride the storm is very hard.
I think the love you find on the way, sometimes in places you would not expect, boosts your spirit.
I had my second ippy yesterday, have been as sick as a dog and then more, which I won’t go into. I ended up sleeping downstairs again in my recliner but at least you can find a level which is comfortable. I did get some sleep. The last ippy didn’t effect me at all, except the brain tumour, so sickness is better. I suppose everyone knows Ippy can go through the brain barrier, perhaps I read it on here, but at least my brain tumour had some ippy first.
It is the only drug I have had so far and I never consider that more tumours will come, why I don’t know, I feel I have enough and don’t won’t to be greedy
also thanks for the heads up on things to eat;
I read a really great article on this yesterday whilst having Ippy, and I will try to scan or type it up – it was called ‘Outsmart your DNA Destiny’ sorry I have hijacked your subject heading;
Book by Prof. Nessa Carey author of ‘The Epigenetics Revolution’ it covers your traits, eye colour, height and bone structure are not changeable, others including disease risk and life span aren’t always set in stone. The food we eat, the chemicals we ingest and the stress we experience not only control our short term health but can also modify the way our DNA behaves, and then potentially transfers those tweaks to our children and grandchildren.
This is just an extract, but Feed your Genes yes green tea compound Polyphenois, don’t get too much as I think it goes off quickly in that little paper bag, broccoli, key compound Sulforaphane which someone mentions and is well know, broad beans – key compound Genistein. The book may be a bit heavy reading but the article I have wasn’t if anyone is interested I will type or scan it.
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