› Forums › General Melanoma Community › Ok Warriors….ready to roll!
- This topic has 7 replies, 6 voices, and was last updated 6 years, 6 months ago by
stacijane.
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- October 7, 2017 at 2:51 am
Warriors,
I just returned from MDA and have completed all my preliminary labs for the PV-10/Pemrbo trial.
Here are my starting points: One 45mmx40mm node tumor (infraclavilcular), One 17mm node at the Hepatic Portal (liver), and one 10mm gastric node. No organ involvement at this point.
Possibly more node involvement in the left armpit but was not detected by CT so will be examined with ultrasound on Tuesday when treatment starts.
I have been super clean with my diet for the past 2 weeks (I know not very long, but I have already seen a 17 point drop on my systolic BP and an 11 point drop on diastolic BP not to mention losing 5 lbs). I've been very strict, even while traveling eating whole, clean foods no junk. I have also began taking ImmunoPower Ultimate A & B supplements (anyone have any experience with these?) but since they are offered by Dr. Patrick Quillin I added them to the arsenal.
Finally I have incorporated meditation into my daily routine and at a minimum getting in 30 minutes of some form of cardio daily. Returning back to strength training next week as long as the Pembro doesn't do something unusual to me. I'm already a spiritual person (Christian) so prayer is not new for me.
I'm not entirely sure how much all or any of this adds to the treatment equation, but like I said, I'm going to war and trying not to leave anything neglected that could be helpful (I do know that I feel healthier, more calm and focused, and I'm generally just feeling better mentally and physically doing the things I'm doing).
I'm really surprised how little emphasis any of my docs put on the nutritional and exercise side of this…it just doesn't seem important to them but I really don't understand why. It seems that the fuel we take in would have a profound effect on our health, immune reponse, overall well being etc. I know Western Medicine mostly focuses on cutting and prescribing but when I asked my team about it…the response I got was "take a multivitamin, that might help". Anyone else run into this?
More to follow once I get the first treatment under my belt.
Tex
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- October 7, 2017 at 12:22 pm
Best of luck Tex! It sounds like you are getting mentally and physically ready – just don’t wear yourself out in the process 🙂 You seem like a strong person, and after you start treatment – don’t beat yourself up if you don’t have the same gusto to stick with all the changes so stringently.
When I asked about food/diet – My doctors just recommended probiotics in natural form , zinc, vitamin D, and a multi-vitamin. I did make a concerted effort at first, and then, quite frankly got tired of popping pills when it was unclear what they were doing (but this is me – I know others take regularly).
I am not sure if you have access to a counselor, but it has helped me talk things through – and also pass the time during infusion.
enjoy your weekend – I was so excited to start treatments, and Tuesday will be here before you know it!
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- October 7, 2017 at 12:59 pm
Hi Tex, sounds like you are covering all your bases. Good for you. I truly believe in doing all you can to keep your body and mind as strong as possible in order to fight this beast. My husband sees a Naturopathic Oncologist as well as his Melanoma specialist. An integrated approach, I think, has kept him feeling well, kept his body strong, and kept him alive the last 6+ years (5 of those at stage in).
Wishing you the best of luck. Keep us posted.
Julie
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- October 7, 2017 at 2:29 pm
Hi Tex… that is great what you are doing. Dropping your BP is a very good sign and the weight as well. I am all for healthy choices
Best wishes to you next week and let us know how things go.
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- October 7, 2017 at 4:30 pm
Hi Tex, it is because of patients like me who drink too much, eat too much and don't exercise enough and yet Immunotherapy still has been working for me going on 4 years. I used to exercise on a regular basis but the side effects of the treatments have been severe fatigue. I asked the same questions back in 2013 about diet, making changes to life style and my Onc said there doesn't seem to be any correlation to getting better results. The only advice that I can give you is treat people right that you will come in contact with during your treatments and look at it as a new adventure!!! I have made some good friends at the hospital and I enjoy my visits. I think attitude is as important to your success as any other factor like diet change etc. Best of luck on the trial!!!Ed
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- October 8, 2017 at 1:39 am
Well Ed…Good for you!! I don't think I'm that lucky so I'm going to try to hit this with both barrels. Thats awesome that you are going on 4 years with results, seriously man, good on you! Can I ask which immunotherapy you are used? I completely agree and I try to treat everyone well that I interact with every day and have met some amazing people already in this journey. Some have literally made me cry (and I'm not a crier) some have left me in awe of their indominable spirit and fortitude. I few every trip to MDA as a learning process, not just about cancer but about people. Your advice is well taken!
Tex
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- October 8, 2017 at 12:48 pm
Hi Tex, well the quick answer to your question is " I don't know". The long answer is I am part of the study that lead to the approval of Ipi/Nivo called checkmate 067 from Bristol Myer Squibb. Double blind so the only way to find out what drug or drugs I recieved is if I progress or if side effects required treatment. I developed Vitiligo which is a great side effect to get based on the data so far, and the first year I itched a lot. I think we are at treatment 95 or 96, every two weeks like clock work. Wishing you the best on this wild journey of dealing with Melanoma!!!Ed
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