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First of all I want to thank all responses to my post asking about issues with taking tafinlar/mekinist. The suggestion of watching you tube videos was especially helpful!! My Dr finally prescribed 10 mg of prednisone daily to help with the side effects and thankfully that has made taking the medication bearable. When I returned for my Pet scan the pelvic tumor had shrunk, however a new spot of intense metabolic activity showed up in my spleen. I just had a CT of my abdomen and pelvis and am waiting for results of that. I’m hoping it’s something other than the spread of melanoma. Has anyone had to have a partial or complete removal of their spleen? Just concerned as that compromises the immune system. Also I’m having difficulty dealing with these continual failures in combating this cancer as well as my declining mental and physical abilities. I’m already on an antidepressant, it just doesn’t seem to help that much. Suggestions appreciated.
Oh Donna – I’m so sorry to hear you’re feeling so low, although it’s totally understandable!!!
Just to address a couple of things you ask or mention: I had a cousin who lost his spleen many years ago, though not through disease (accident) and he has remained very healthy!!
Secondly, when my sister was in the throes of mel, none of the anti-depressants she was prescribed worked for her either – there were times I worried more about her mental state than her physical. Her treatment began with Taf/Mek but she only managed two weeks before the side effects were overwhelming (fever, headaches, vomiting) and then a Gr 3 skin eruption (spread to 80% of her body) ended the treatment, period. But, only those few weeks of Taf/Mek did great things for shrinkage of existing mets even though she also experienced progression. At this point her onc switched her treatment to immunotherapy, ipi/nivo combo … she only had 2 rounds of that before more ARs ended it but went on to become NED after a year of nivo only. I know you’ve had nivo but weren’t on it for long before they switched you to Taf/Mek …. am wondering if your doctors have addressed the immunotherapy combo with you as a treatment plan? If not, perhaps you could ask them if it’s a possibility (I did read your bio … no preclusions were mentioned).
You also use the words “continual failures” above and mention in your bio that you were told by doctors that they “got it all” … so that can certainly give one a sense of failure too. But in reality, what they “got” was everything they could see and find. That’s not a “failure” – mel is too sneaky to always reveal itself. Even the acronym NED reminds us that there is no “evidence” of disease … from scan to scan. You have not failed!!! so please try to stop fighting that mental war and put it in its place!!!
In the “blackest” days with my sister, I’d read her NED stories – it helped both of us tremendously and you can find alot of them here on this site!! But also, there’s nothing like the word “shrinkage” to lift the mood and you’ve had some, so do take some relief from that – you are responding in some fashion. Some times it’s slow to see a response … and for some it’s much quicker. No matter, it’s definitely a roller coaster ride for all who find themselves there (including the caregivers).
You can do this Donna!!! Post as much as you need to – we are all here pulling for you!!!! Wishing you the best!!!
Hope you are doing better now. I lost my spleen due to a car accident when 19 yrs old, 40 yrs ago… Now 59 and only had 8 sick days from work over 37 yr professional career, never any problems and have been super active. Don’t worry about spleen at all. That said, my wife is the patient w stage 4 Mel. She’s had asthma long term and pneumonia twice, but still plays tennis 3-4 times/week, despite the cancer.
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