› Forums › General Melanoma Community › It is Stage4: IPI/NIVO starting soon. Anyone use Tumeric or NSAIDS for inflammation??
- This topic has 8 replies, 4 voices, and was last updated 5 years, 10 months ago by
NewEra.
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- July 5, 2019 at 8:04 pm
Lung biopsy came back melanoma, so I’m stage 4. One lymph and long nodule only on PET. but other sites have popped up since. Dr didn’t do an MRI, so waiting for that on Monday to see if I have any brain mets.Starting IP/NIVO next Weds, so reading up on the side effects. It seems that most of the reported side effects may be a result of extreme inflammation – fatigue can be caused by inflamed thyroid/adrenal glands, joint pain and skin rash are arthritis symptoms, which can be caused by general inflammation, and colitis/GI issues can also be due to inflammation.
So, I’m wondering if anyone had success just addressing the increased inflammation instead of treating the symptoms of inflammation. For example, taking Turmeric, or NSAIDS (aspirin, Advil, etc.) or a prescription anti-inflammatory, like Mobic. What about drinking cider vinegar/lemon juice/tart cherry – all holistic approaches to curb inflammation?
I’m planning on taking aspirin, turmeric and Tart Cherry juice daily – started today to try to head this off at the pass…. just wondering your thoughts/results if you tried this approach.
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- July 5, 2019 at 9:08 pm
Hi
Sorry to hear your news and hope the treatment is effective for you. Before deciding to take any supplements you should discuss it with your Onc team. As I was told by my team recently – we are using these drugs to change your immune system to fight the cancer – we don’t want you messing it up trying to change your immune system yourself. I thought it was a fair point so keep to Vitamin D & B3 as they recommenced to me
Good luck
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- July 5, 2019 at 9:41 pm
First off New Era, good luck with treatments!!! I have two video links for you that get into inflamed versus non inflamed tumors or hot vs cold tumors and in the second link Dr. Postow goes into detail on Immune related adverse events or side effects in detail and current thinking on how to manage side effects with immunotherapy treatment. Both videos cover a variety of topics on current thinking when it comes to melanoma research and goes into detail about role of T-cells in immunotherapy treatments. In the first video a couple of good areas are at the 4;30 min mark and 7:40 and 11:15min mark. You can sign up and join research to practice to keep up to date on new ideas. Take care!!!Ed http://www.researchtopractice.com/ImmunotherapyInterviews118/Video?playlistIndex=0#t=0m0s http://www.researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=34m46s -
- July 6, 2019 at 2:06 pm
New Era, I came across this peerview presentation this morning by Dr. Lipson on IRAE’s (immune related adverse events) and how oncologist manage them. I thought you might find the information helpful for your general knowledge going into Ipi+ Nivo combination. The presentation is broken up into section and the third section called “specific recommendations for diagnosis and management of Imar’s” is by far the best section and is very detailed. The IMAR’s stands for Immune Mediated Adverse Reactions. I hope you sail through treatment but it is good to know what symptoms to look out for when it comes to the combination. Best Wishes!!!Ed https://peerview.com/p/index.html?collection=150204478&presentation=150204478-p3&SpecialtyID=37&ProfessionID=12&Promocode=815#screen1 -
- July 7, 2019 at 7:13 pm
Hello NewEra, nice to meet you under our circumstances! But, as your already aware here at MRF (Merf) were all in the same boat so you should feel a level of comfort in this..
Yep, goodol’ ipi/nivo combo, i got thrue all 4 ipi’s, a few postponements here and there cuz for me it distroyed my Cortisol producing glands and i take Hydrocortisone for that and allvis well. I use, still, 500mg Naproxin (Naprosyn) usually just 2 at a time for onset of either tumor pain or “deep nerve pain” wich i really dont have anymore since my Right lower Lobectomy (8cm lung Tumor) was done back this December past, i use to get SEVERE deep nerve pain everywhere but, not anymore, i guess we have nerves that when pressed against by tumors, it caused severe pain, and Naproxin was fabulous…like folks have said, get your docs opinion on side effect meds, youll be alright…-
- July 8, 2019 at 9:19 pm
Hey there!Thanks for the info!
I sent you an email the other week, asking about your experience wirh Kaiser. Im with them in Balto, but not impressed so far. I seem to know more than they do, and they don’t have a melanoma specific group… mixed in with all the other cancers. Onco missed ordering an MRI to check for brain mets, which delayed my immuno start
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- July 9, 2019 at 4:11 am
Ah yes! I did reply to you right? I remember you! Im 99% sure i wrote you but if i didnt, here it goes!
Kaiser caught my first primary in 2008 (Stage 3b) and every year it comes back and im still alive! From 2008 to 2017 iv had all surgeries, and now, 2017 it poped up in both lungs (only 1 tumor was excised 8cm lobectomy) keyytruda, Yervoy and now Opdivo, today its in my Sigmoid, (intestines) and stomach surface. Kaiser for me seems proactive, my oncologist isnt trained in Melanoma but admitts shes learning in leeps and bounds with me! She/ we gave other oncologists we rely on at only a phone call or emsi away! Iv taken all the topline immunal meds. No fussing, no hassle, Kaiser injected thousands and thousands of dollars of immunal meds in me, not their fault its not working for me as hoped…Is there other Kaisers around you with Melanoma Spc? -
- July 10, 2019 at 10:23 pm
I think Kaiser West Coast is an entirely different animal than Kaiser in the Balt/DC corridor. They are still trying to break in to that market, where Johns Hopkins and GBMC reign supreme! They have new facilities, but not enough Drs to staff them. ONCO dept only has three MDs!I live in NE of Balto, but had to travel to DC (45 miles) for their only PET facility, they couldn’t schedule a lung biopsy for 3.5 weeks – had to travel to DC burbs again to get it in a week. Had to be a Lioness with the admins staff even to get that, because Drs just order the tests, then your chart gets electronically “thrown over the wall” to the schedulers, who don’t know a melanoma patient for a gall stone suffer! “I’m just the scheduler, ma’am! Our next availablity is a week from next Thursday!” At one point I said, well, what about next December, in Mallorca?????
ONCO MD forgot to schedule MRI, so another week out, but at least that was in the Balto area. But it delayed my treatment for a week, and now I have another tumor (or swollen spleen or liver) under my rt. ribs! Dr. seemed unconcerned, as “it wouldn’t change our treatment plan”. I’m like, you don’t CARE that in a week I got something the size of a prune in my sternum, then the NEXT week there is something painful pinching me under my ribs when I move? If that “flares up” (enlarges) as things are supposed to after the first/second treatment, what is the course of action then???? And why was my treatment delayed while you got an MRI looking for brain mets if it wouldn’t have changed the treatment plan?
They put nothing in my electronic chart – no record of test dates after the appoitments have been kept (you can see past medical visits, but not tests) and they don’t post the results interpretations. The gave me a printed copy of my treatment plan, but it isn’t available under the “Treatment Plan” section of my chart, so I never really got documentation of the Immuno meds. When I asked exactly what meds I would be getting, and where I could find that in my chart, as the hard copy I was provided wouldn’t be helpful to someone who was “acting on my behalf”… I was told it doesn’t go in my chart, and that I should provide folks with the hard copy of info I was provided, and that detailed printed info would be provided at the first therapy appointment. My reply was a little over the top, but when I insisted that things get put in my chart they magically appeared (just like in my HopkinsMedical chart, but I did’t have to go ballistic when I was with them!)
So, needless to say that next Dec. when we have open enrollment, I’ll be switching back to BC/BS or Aetna…. CYA, Kaiser, I’m “Permanente” outta here!
I’m at that appointment now, and the ONCO Doc actually gave me a mini-lecture on not needing to “go ballistic”, and that the staff didn’t even know what I was asking for in my electronic chart. OK… well, that doesn’t give me any confidence at ALL!
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