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January 29, 2013 at 6:38 am #20967wcacousticParticipant
Since my 66yr old father was diagnosed last year after finding a lump in his arm it has been a wild and unpredictable ride. Followup scan of lymph nodes were fine, another follow up scan found small lumps in the lungs, two months later a couple more and larger, two months later in the liver. Last week a liver biopsy. Then a head scan (negative). Setting up for chemo later this week (unknown drugs due to pathology not yet received), then after two treatments the oncologist plans to switch to immunotherapy if no progress (I do not yet know the specific drug). In Canada we are not covered for the planned $40,000 per immunotherapy treatment unless chemo is unsuccessful so this is a backdoor method to access the treatment, although this concerns me a little as even short chemo can run dad down and I would like any treatment to be as effective as possible. All this treatment info from an impromtu visit with Dad from the oncologist and I was unable to be there.
I intend to post details on the Stage IV forum as soon as I get the pathology report and consult again with the oncologist, but for now wished to wade into the daunting world of forums. I have been reading the MIF forums religiously since I discovered them three weeks ago. They have been an immense support to me. The internet is vast and intimidating…talk about overload! As you all know as caregivers and advocates we live and breathe melanoma and it is our “duty” to be as educated and up to date as possible. I sincerely wish to thank all that post on the MIF site for providing such relevant and important information, and a real human side to this difficult journey. A special thank-you to those that post on the caregiver forum for giving a level of support that can only come from those living so closely with melanoma. It is much appreciated by this newbie…and it truly keeps my head above water.
I am lucky in that I have a wonderful brother who is on the same page, and a father who is willing to put up with my Vitamix fruit and veg smoothies and my chatter about the benefits of nutrition to prepare and get through treatment. We both enjoy cooking and research and that helps a little to work around the elephant in the room. A little bit anyway. Otherwise it is, at times, intesely difficult and isolating for us individually, for different reasons. My father lives alone, although I visit and stay with him as much as possible. I constantly live with the pangs of inadequacy…that despite my research I will not be able to consult effectively with the oncologist to hook Dad into the best avaiable treatment or trial. The fact that the oncologist is full speed ahead reassures my Dad somewhat but knowing all the promising trials out there I wonder if it is full steam ahead in the right direction. I will present my thoughts and treatment questions to the oncologist but hope I am strong enough to present any concerns (if any) that might arise in my mind. Anyway, this is becoming a book so thank-you for listening and I hope this is the beginning of a difficult journey with perhaps some reward for Dad, my brother, and myself…I always like to think there is a silver lining in every cloud. And here’s hoping we can keep that cloud as small as possible for as long as possible…
AaronJanuary 29, 2013 at 1:05 pm #58837Catherine PooleKeymaster
I’m happy we’ve been able to help you on this journey. I think Yervoy was approved for Canada. Is that the immunotherapy you were talking about? I look forward to hearing more of your details on the stage IV forum. Your father is a lucky man to have you looking out for him!January 29, 2013 at 2:25 pm #58838GillyParticipant
Welcome Aaron – I hope things go well for your Dad – we know the feeling – the total absorption with Melanoma and its Treatment – the worry – the lack of a feeling of being in control – your father is lucky to have 2 proactive sons – its good to be in the know especially as effective treatment options have to be sought – they often dont fall into your lap – it sounds like your Dad’s oncologist is well on side though. My hubby is stage 4 with several inoperable mets and he is now on a trial taking Zelboraf. My advice is talk about it to your brother and dad – dont let it be an elephant in the Room – we have 4 kids and we talk about it and sometimes laugh about it (it seems odd but it does make things easier) especially when there are drug side effects or other undignified tests. THis site is great for up to date advice and a sympathetic ear. Take care and keep looking after your dad ! All the best
GillyJanuary 29, 2013 at 10:03 pm #58839DadZGirlParticipant
You are in the right place! Like you I am looking after my father. My Dad is 74 and was not in good shape physically but was able to tolerate Yervoy (ipi) Jan – Mar 2012. I truly believe it helped him a great deal. He was diagnosed Stage IV in Dec 2011. When I first heard my Dad’s news I bet I spent the first 2 weeks looking for a cure for Metastatic Melanoma, then once I accepted I couldn’t find a cure I began learning about the disease. This site was the best source of information for me. Watch the webinars, they will really help you understand what is going on. I learned to slow down, collect test results and go to all doctor appointments, then come back here. Each result will take you on new course so for me that was tough because I thought I had to know everything right now. For example right after Dad’s diagnosis I found out about Zelboraf and I spent a lot of time reading about that potential treatment only to find out my Dad is BRAF negative wild-type which meant he couldn’t take Zelboraf as a treatment. It is a hard journey but for us we have made it a good one. The people here are more than supportive, they are educated and will not steer you wrong and they truly understand. I’m sorry for your Dad’s news but with you and your brother on his team he will truly benefit. Many prayers and thoughts for success and quick action coming your way!!!
LauraJanuary 31, 2013 at 2:41 am #58840AnonymousGuest
Aaron, I’m sorry we have to meet you, but you have indeed come to absolutely the right place for help and support. Laura said it great.
Truly doing Gods work, the men and women in the medical community have made great strides in battling this horrible disease. Suddenly, THERE ARE OPTIONS where no real options existed just a few years earlier.
BTW, take really good care of yourself too. It’s good for you but also good for your father…a real 2-for.February 2, 2013 at 6:10 am #58841wcacousticParticipant
Thank-you all for all of the kind and supportive responses, it is certainly not a surprise coming from this group!
We had our first Chemo treatment yesterday, 2000mg Decarbazine. No issues thus far. The idea is to check progress after a couple of treatments and if it is not working switch to Yervoy (ipi), although we do not have the BRAF results yet so not sure why they seem to be leaning that way.
As soon as we have the BRAF results I will post a detailed rundown of diagnosis/current treatment/planned treatment. Gilly, thankyou for your advice, we have been laughing lots lately and getting in some serious Q-time. Laura, great advice on slow and steady. Have requested Dad’s entire file from the beginning and have attended and recorded all important Dr. visits, even the pharmacist dispensing the meds, but will be sure to take some personal time between treatments. Jeff you are bang on…
My brother is awesome and we both have great spouses too so I am the first to acknowledge how lucky and supported I am, especially having all of you also. Stay tuned and my best thoughts to all of you. Chat very soon.February 2, 2013 at 8:59 pm #58842LAXMOMParticipant
Wishing for the best for your father. As a caregiver, I think the best thing we can do is research, learn and be an informed advocate for our loved ones. We help shoulder some of the burden of the day in and day out rigors of diagnosing and healing. I find the waiting to be hard but this forum is very helpful as we newbies learn. So many here have “been there done that” and can guide us in making informed choices from what they have collectively learned. It is great that you have a very supportive family!
WendyFebruary 2, 2013 at 9:22 pm #58843DadZGirlParticipant
Thanks for the update. Glad everything is going alright so far.
Keeping you and your family in my thoughts and prayers.
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