- July 29, 2020 at 9:04 pm
I am not one to go onto social media very often, but right now I have a few questions…really looking to see if there are athletes out there who are combatting a stage 4 with anything additionally (other than standard treatment)? I was diagnosed last May and had it in my brain, left lung, lymph nodes and left ovary. After brain surgery, radiation several times and immunotherapy, visiting various specialists …it exists still in my left lung. potential pericardial effusion there always. it’s shrinking but not moving. Regardless, I am a single mom and continue to work from home, run a fundraiser for poor people fighting cancer and continue to weightlift, which is my favorite thing! I have been on Keytruda (did nothing but enlarge everything) and the combo immunotherapy (liver said no more after 3 times) and now just on opdivo every other week.
My supplementation is extensive but seems to be successful at combatting joint / muscle fatigue….just wondering what everyone out there is doing to remain athletic and active. Oh yes – plant based all the way.
Thanks for all advice and suggestions!
3c with 6 months of opvido , 240 mg 2x a month. i ride a mountain bike pretty intensively 3-4 times a week for an hour or so. 800 caloires , hi heart rate.
- July 30, 2020 at 12:09 am
after a ride i have arthritic pain in my ankles and hands(from gripping handlebars) so I take a couple of aspirin and it works great. Hard to tell pre-opvido about fatigue. i am thinking it does tend to increase post ride fatigue but i can’t quantify. . I won’t over stress or over heat myself as in pre-covid , so I back off when that seems likely. Its stay 90 to 95+ here for 3 months so i am cautious about that.
- July 31, 2020 at 3:24 pm
note: i was getting another mole excised and Derm told me to switch to Tylenol out of fear bleeding. The Tylenol raised my liver enzymes to such a degree they canceled a round of infusion. I stopped the tylenol and went back to aspirin , no problems now.
- July 30, 2020 at 9:34 am
Not sure if you are new to the board, but reading the posts that I do for the last few years, there are many who exercise pretty hard during and after treatments I think part of that is individual, some have much higher tumor burdens affecting their quality of life more than others. I can say for myself, I did not have intense workouts, but worked steadily throughout my treatments and now that I am NED I am in the pool (aquafit training) 5-6 times a week. I am in better shape now than I have been in years. I want to have my body prepared if I need to start ramping up the fight again! Sounds like you are whipping cancers butt! Way to go!!!!
Unfortunately, I developed colitis after 3 months, so had to quit, but my treatments worked and remain NED. I was told by someone to take claritin twice a day for a couple of days before treatment then a couple of days after, that really helped alot with the body aches/soreness I was experiencing.. Other than that I just had some significant fatigue but just worked through it. I also took (and still take) Turmeric supplements and magnesium to keep things settled.
- July 30, 2020 at 2:24 pm
I am sure in the next couple of days more people will be chiming in. God bless and keep you, this melanoma thing sucks, no two ways about it!!!
BubblesParticipantHi Jane. Sorry for all you are dealing with. It definitely sounds like you are living large and giving melanoma a real go!!!! I was diagnosed with Stage IIIb melanoma when my kids were 10 and 12 and I was in grad school, in 2003. No valid treatments available other than surgery – so I pressed on. Given that, I progressed to Stage IV with brain and lung mets in 2010. Surgery to lung, SRS to brain. Still NO systemic therapies FDA approved – BUT – in late 2010 I got a place in a phase 1 trial for the drug now known as Opdivo. I took it for 2 1/2 years, last dose in June of 2013 and remain NED for melanoma with no further treatment. I have always been a health proponent, exercised, and healthy eater – BEFORE melanoma – and after. My blog is filled with lots of stories of how bad I felt given the fatigue, rashes, joint pain, wheezing and mucositis I experienced during my trial and for some years after. I have researched most all things melanoma in the past 10 years – including supplements, alternative meds, etc – you can use the search bubble if you are interested. Unfortunately, there is no magic bullet or pill or food that will make the side effects of immunotherapy or targeted therapy go away. Those with significant side effects may have to take a drug holiday or medications like steroids. However, if you are tolerating your therapy okay – the biggest help I found was ibuprofen and attitude. Like the Nike ad – JUST DO IT!!!! That said, some folks suffer more debilitation from both melanoma and therapy than I did and are not as able – so I was lucky. I worked full time through my therapy – missing only 3 days in those years and continued to run, hike, and do the exercise I had done previously. Admittedly there were plenty of days where I was SLOW AF!!!!!!!!!!!!!!!!!! But, I got her done! You might check posts here by Edwin for inspo. He is incredible!!!!!!!!!!!!!! He is a 70 plus year young beast – continuing to run through keytruda, ipi/nivo, radiation, bone pain – a real inspiration!!!!
- July 31, 2020 at 1:49 pm
You can do this. I wish there was some brilliant solution. Mostly, live the healthy life style it sounds as though you always have. Continue to to the things you love, including weight lifting. Give yourself a break when you need. Hug those kiddos.
One word of caution: Be sure your docs are aware of all the supplements you take. You made find these reports interesting:
Though this may sound contrary to the message my post may have sent, we have learned a great deal about the need for a healthy gut generally and in cancer treatment in particular. Here are a zillion articles: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=microbiome
The only caveat here is that the road to an improved gut needs to come from foods – like kimchi, buttermilk, yogurt, kefir, sauerkraut, etc – NOT from probiotics in a bottle. There are articles included here that address that.
Hope this helps. I wish you my best. Celeste
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