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February 6, 2013 at 10:13 pm #21002wcacousticParticipant
Hello there, I have posted on the caregiver’s site and have been waiting to get more information on my Dad’s condition before posting here.
My father is 66 years old and in good physical shape, although is now underweight. A year and a half ago he had a tumor in his arm removed. In Aug 2012 various CTs showed all was fine except one 6mm nodule in his lung. In November that mass was now 1.1cm with a new 4mm nodule. A bone scan was negative. Last month a CT showed several pulmonary nodules, the largest 1.4cm. 5 additional nodules were found in both lower lobes, middle lobe, and ligula. Multiple hypodense lesions were observed scattered throughout the liver. Largest lesion measures 2.3cm. A couple of small (4 and 5mm) lesions were observed on the spleen. A head CT scan was negative. No PET scan has been administered to date.
Unfortunately the latest scan and treatment initiation was delayed a month due to a clerical error but since then chemo has been rolled out quickly with Dad receiving 2000mg Dacarbazine last week. The BRAF test has not come back but the oncologist is leaning towards ipi. This expensive treatment is not covered unless conventional treatment fails, thus the Dr. will do only 2-3 cycles of chemo before we move on to immunotherapy. I am a bit concerned that chemo might run Dad down and cause the immunotherapy to not be as effective. Not sure if that’s a valid concern, and I guess it’s a moot point now that chemo has begun. We are focusing on food right now…having fun cooking up a storm to ensure Dad gets the calorie and nutrient intake he needs for the long haul. Got a high-speed blender which should help during times of poor appetite from the chemo. Most importantly we are just enjoying each other’s company!
I listened to the webinar with Dr. Wolchok on immunotherapy and it was very informative. There is real hope out there for melanoma patients. I am submitting this post as an initial offering, any feedback is much appreciated. We really are at the mercy of the oncologist at this point although myself and my brother are educating ourselves as quickly as possible on this disease and Dad’s options, and are attending every Dr. visit and treatment. This site has helped immensely with looking at possible options/trials, and learning from other’s experiences. It has been very rewarding both from a human and medical perspective, and I look forward to staying in contact as we start our journey with much determination.
Will be in touch as information comes in. My best to all of you that are walking the path of this disease, I “listen” and learn from you every single time I am on this forum…
Vancouver, CanadaFebruary 7, 2013 at 4:12 pm #59009DadZGirlParticipant
We did not do chemo as it was not an option for my Dad because his physical health was already very compromised at time of diagnosis. He did do Ipi. I read the entire website at Yervoy.com which frankly will scare the hell right out of you, but for me it was necessary to know everything about the medication to be prepared for anything that might come up.
When my Dad was not able to eat, he drank Ensure. When he finished his Ipi infusions his Onc finally prescribed Megace which he still takes today daily to keep his tummy growling and make food taste good. I highly recommend this if you get to that point.
While on Ipi we did not offer ANY red meat or anything spicy to avoid colitis and I think it worked. We also did not offer ANY raw vegetables for the same reason. We stuck to every bland variation of chicken and fish.
Also, my Dad did not have any side effects from Ipi until third infusion which I think is fairly common.
Best of luck and hope the chemo goes ok!
LauraFebruary 7, 2013 at 4:19 pm #59010Catherine PooleKeymaster
I believe in Canada and other nations, dacarbazine or other chemo is required before the IPI is allowed for treatment. The cost is very high and I’m not sure of the logic. But if he progresses on the dacarbazine then IPI will follow. I would be looking for other trials as well with PD1 etc. If he is BRAF positive I would certainly consider Zelboraf or the dual therapies that are coming along, GSK braf/mek.February 10, 2013 at 8:12 am #59011wcacousticParticipant Thank-you Laura and Catherine…such important info for us as we take the next steps. BRAF results hopefully next week. Take care,
AaronFebruary 10, 2013 at 2:34 pm #59012bettinParticipant
depending on the country, Ipi is only approved as second line treatment (that is also the case here in Europe), so you need a ‘failed’ therapy in order to have access to it.
Chemotherapy is known to rarely work well in Melanoma, so if an oncologist leans towards Ipi, a short cycle of chemo is the quickest way of having that ‘failed therapy’ and then moving on to Ipi. In case you’re BRAF positive, this then leaves you the option of BRAF inhibitors for later.
What it would really take would be an approval of Ipi as first line treatment option!
Wishing you and your father all the best-
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