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October 18, 2012 at 8:52 am #20690
I was on here previously as Gilliosa but had to change my details – my husband has been stage 3 c for nearly 3 years – he has been on the Ipi Eortc double blind for nearly the permitted 3 years – his last scan showed a suspicious nodule on the other side of his body away from the initial primary and lymph node lesions – I think subcutaneous – he is about to have a biopsy/PET and while I know I must wait and see the results – I want to see what the situation is likely to be if it does turn out as a new metastasis – forarmed is forwarned as it were – if his cancer has metastasized we are either on the placebo or ipi has stopped working – will they be able to tell us which arm we were on ? Secondly, I understand there is a wash out period before going onto trials like anti pd1 or the like. Do we ask about any other potential treatments – I know his primary was tested for Braf but I dont know the result because we chose the Ipi trial. Presumably they will want to surgically remove the nodule (if it is MM) does this involve the same as a wide excision of a primary cutaneous melanoma lesion ? I realize there are a lot of ifs but I am getting all the info I can before my husbands appointments. He is being treated at the IGR in Paris.
Many thanksOctober 19, 2012 at 3:08 pm #57019Catherine PooleKeymaster
I remember you! Welcome back. You ask a lot of questions which I will try to answer. First of all, you are in a good place for treatment~ Dr. Robert is excellent. I would definitely line up other treatments just in case, so ask her about PD1 and make sure you get his BRAF results. I am uncertain how they will remove the nodule, depends on its placement. But until then, it could be something benign, we hope. Did he have side effects on this trial? Tired? You would probably know if he were on IPI. Hoping for the best for you both.October 23, 2012 at 1:35 pm #57020 Hi Catherine – thanks for your reply – my hubby had no side effects but he never stops working so even if he was tired he would not say !! I have said to the team at IGR that i thought he was on the Placebo and they said “just because he had none of the obvious side effects it doesnt mean he’s not on the Ipi arm because some people had no side effects” – I suspect they have to say that to support the double blind protocol. He has his echograph/biopsy next week (when he’s back from LA !) and then his PET on the 6th – I know it is a great treatment hospital but I just wanted to ask for the right things – Pd1 was on my list and in view of what was said on the last webinar (which are really superb by the way) which suggested zelboraf as a last resort only i was hoping to see what else there was first – I know that Dr Robert or her second in command Dr Mateus will fill us in if necessary but there is sometimes a different slant on research in Europe.
ThanksOctober 24, 2012 at 7:26 am #57021swissieParticipant
I think I have been on the same trail (10 mg ipi) as your husband.
I had to end my trial after 8 infusions because of the side effects (mainly regular headaches and extreme fatigue, also an enlarged spleen).
Last time I went for my scans and bloodwork (6 weeks ago), my doctor (in Zürich, Switzerland) told me they have some patients who ended the full trial. She mentioned the doctors were pretty sure all these patients were in the placebo group!
She could not answer my question, what the maximum dosis has been a patient had.
I have the feeling most patients could not tolarate much more than I did. However, as it is a double blind trial, so nobody knows for sure.
I do hope this new nodule is nothing at all.
I had a huge scare in Januar when they found “something” in my kidney. Had to wait for 6 weeks, to do a new scan and see if there were changes. Lucky for me “it” did not grow, so it seems to be a cyste.
All the best,
SabineOctober 24, 2012 at 3:30 pm #57022
yes I am sure it is the same trial – and pretty sure it was placebo – nevertheless we were glad to have the scans/bloods and examinations that go with the trial – as we have done it since 2010 we are coming to the end anyway and we hope that having done the placebo my husband has earned some brownie points if he does progress – I have kept up with your treatment history and find encouragement from it – thanksOctober 24, 2012 at 9:07 pm #57023swissieParticipant
Gilly, my main reason for joining the trial was also the regular checks.
Last month i had my 3 years into the trial. I was scared they would advise going to a 6 month scanning period, but my new appointment is in December.
I just love the regular scans!
I actually believe ipi just left my body now. Had my first huge cold in years, and my lymphocytes and some auto-immune values are strangely decreasing. Nothing to bad, but slightly below the range (and below my pre-ipi) values.
We’ll see in 6 weeks.
I wish you and your husband all the bestOctober 25, 2012 at 8:38 pm #57024
all the best for you too Sabine – I hope your immune system comes back up after the Ipi boost – I guess our systems have to re-learn how to work hard.
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