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April 1, 2014 at 5:45 pm #21902
My uncle-mid 50s, has just found a re-occurance of his Melanoma, metastasized to his foot, soft tissues of his arms and legs, bladder and I believe the chest wall. He is being treated at Vanderbilt in TN and his physicians are suggesting interleukin 2 (to begin in 1 week). His biopsy is being sent for gene testing and thus, there may be additional treatment offered following the results.
I am wondering if this community can answer of few of my questions to help guide my family:
1. Is there anything that you wish you knew and asked of your physician before beginning Interleukin 2?
2. Are there any questions that are a “must” to ask of the physicians?
3. Are there other adjunct treatments that my uncle can ask about or begin at this point?
4. For any patients on interleukin 2, are there adjunct therapies or complimentary that might be helpful or things to help with the toxicity symptoms.
5. Longer term-what should we be investigating or educating ourselves on now, at the beginning of this next phase of the journey to help overall.
I thank you for any advice or thoughts you have. I greatly appreciate it!
RachelApril 2, 2014 at 12:49 am #64002AnonymousGuest
Hello Rachel and sorry to hear about your uncle.
Actually, my very first question would be why IL-2 out of the box? It’s very rough physically and not very effective by itself.
IPI and the Braf/MEK drugs are now pretty much the standard of care and in order to get into the new expanded access program for the Merk PD-1 drug, he would need to have tried these drugs first.
JeffApril 2, 2014 at 5:59 pm #64003
Thank you! I am not sure why they are choosing to go right to IL 2 but I am going to ask! Any guidance at this point is very helpful so thank you again for your response!!
RachelApril 3, 2014 at 4:28 pm #64004Catherine PooleKeymaster
I second Jeff’s question, IL2 is very old therapy with the majority of folks
not responding to it (94%) yet it is very toxic. I would get a second opinion nearby at the Sarah Cannon Research Institute, where they are on the cutting edge of new therapies and quality care. I’m not saying that Vanderbilt isn’t a great place, but would definitely question their approach. Let us know how things go!April 3, 2014 at 11:13 pm #64005 Thanks again for the response. I know that my uncle has been made aware of the intense toxicity and side effects of IL-2. My hope is that once the genetic testing comes back we may be able to switch to a different form of treatment. I did forward the idea for a second opinion however at the research center. I will definitely keep posting with updates as I am sure more questions will arise as we move along the journey. Thanks again!
RachelApril 4, 2014 at 12:54 pm #64006AnonymousGuest
I would really take Catherine’s suggestion to stop in at Sarah Cannon. They are excellent, caring, interactive, and have many of the cutting edge trials, including a new class of drugs called ADC, which some call “smart bomb chemo”.
Absolutely recommend you see them, especially if your uncle has gotten no prior treatment as more trial options may be open to him.
JeffApril 4, 2014 at 6:43 pm #64007
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