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steroid tapering- prednisone and cellcept

Forums General Melanoma Community steroid tapering- prednisone and cellcept

  • Post
    MelMel
    Participant

      I am looking for anyone to share their experience or knowledge about the steroid tapering and what I can expect during and after this process. I am not talking about 30-80 mg doses but much higher. I had a DILI (drug induced liver injury) following my second ipi/nivo combo infusion and have been on 160 mg prednisone and 3000 mg cellcept for more than a month. The liver enzymes have finally stablilized and tapering started however my oncologist wants to do weekly reductions but I have read some of the previous posts and patients stated 5 days or 3 days taper dose period. Some people stated they had a relapse in liver enzymes at certain point. Also, how long did it take for the body to return to somewhat near normal? I have read up to a year. I understand that we are all individual and unique in our responses to healing and such. And for those who had a similar unfortunate experience with combo theraphy, did you eventually return to nivo only or were you able to continue on ipi and nivo to complete the intial four immunotherapies? Any advice would be most welcome and greatly appreciated.

      Melanie 

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        Bubbles
        Participant

          Hi Melanie,

          A variety of gradual reductions in the use of steroids is common.  Decisions regarding how to implement a decreased dosage is based on the patient's symptoms and ability to tolerate each reduction without a return to the prior symptoms.

          Most folks with substantial problems with the ipi/nivo combo do not return to it, BUT can go on to tolerate nivo alone well once symptoms are under control.

          Additionally, despite 40% of melanoma peeps having to stop the combo, here is some good news: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html

          Here is some additional information that may interest you as well:

          Report on essiac from Memorial Sloan Kettering:  https://www.mskcc.org/cancer-care/integrative-medicine/herbs/essiac  There it is noted:  "Do not take if ~ You have kidney or liver problems.  You are undergoing chemotherapy (in a case report, levels of a chemotherapy drug were increased in the blood of a patient also taking Essiac, with the potential for increased toxicity.)"  

          Report on Avemar from MSK:  https://www.mskcc.org/cancer-care/integrative-medicine/herbs/wheat-germ-extract  They note that this is basically expensive wheat germ, and for many is not a problem, but, is contraindicated for use in…

          "Patients with hormone-sensitive cancers, as it may have estrogen-receptor activity.   Patients with organ or tissue transplants.  Patients with bleeding gastric or duodenal ulcers, enteritis/colitis, or malabsorption syndrome.  Patients with sensitivity to gluten and those with fructose intolerance.  The manufacturer recommends discontinuing Avemar usage 2 days before barium X-ray contrast examinations and resume 2 days after procedure."  

          Report on Boswellia, MSK:  https://www.mskcc.org/cancer-care/integrative-medicine/herbs/boswellia  

          They note that folks on anti-coagulant therapy may have an increased risk of bleeding.  Additionally, folks with irritable bowel syndrome can have worsening of their symptoms.

          "Natural" products can provide amazing solutions and problems for patients.  Think of the lovely periwinkle that allows us to utilize vincristine, a drug responsbile for saving innumerable lives from cancer.  Then, consider hemlock and poison ivy.  Here is a report on just some of what nature has given us: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/03/25-50-of-effective-drugs-we-currently.html  

          Bottom line, NATURE doesn't play.  She is powerful and her herbs are as well.  I've shared this with you before, but it is important:

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/combining-alternative-and-conventional.html  

          Given the fact that immunotherapy puts all of us at risk for colitis and liver function issues, I sincerely hope that you have discussed ALL the "supplements" you imbibe with your docs and wisely consider these issues when recommending them to others.  Still, what we each pursue in search of health is personal, hard, and to each his own.  BUT…I have spent my entire adult life making sure that folks have the tools they need to make INFORMED decisions about their health…..and while you may be informed about these things….others may not be.  So…I persevere.

          I wish you my best.  Celeste

            MelMel
            Participant

              Thank you Celeste for the info however I am well informed and well aware of the risks and if I feel that benefits still outweigh the risk I will make my own informed decision. After all, none of the immuno therapies come without side effects as far as I know and we cannot choose between which one we get either. We can only hope and pray. I agree with you that many are misinformed and maybe taken advantage of.

              Also, just for your information, the oncology pharmacist at U of M stated that it's often not the actual supplements themselves that are the problem but the way they are manufactured and processed since there are toxic residues during the processing which may remain. She also said that there are three agancies which check the purity of supplements and these are : 1. USP symbol to test vitamins, 2. Consumer Lab flask symbol, and NSF which is either blue or black.  These she deems safe.

              Thank you for all your hard and dedicated work. 

              Melanie

            STL Mike
            Participant

              My oncologist advised against continuing Opdivo while taking the prednisone. Lucky me, my last scan had been NED so I was able to stop the immuno. ( was on it about 2 years )

              I was on prednisone for about a year. I was getting skin lesions from Opdivo.  It was a cycle of weaning off, lesions not going away or getting worse, up the dosage, wean down again, wash, rinse, repeat.

              My dermatologist was taking me down 5mg per week ( 7 days ) when I was at finally 5mg he had me do 2.5mg for another week.

              I was down, then, up in dosage several times.

              As you probably know prednisone has it's own wheel o' side effects.  Seemed like everytime I changed dose, up or down the current side effect went away and I got a new one for the next week.

              Hope this helps

                MelMel
                Participant

                  Yes, thank you so much for sharing your experience. I was/still am on such extremely high doses and the side effects are far worse than the combo ipi/nivo from what I have experienced. As you had mentioned, every change in dosage brings on a completely new set of issues and they are too numerous to mention. So each week or less are never boring to say the least. My daughter is getting married in early May and I was hoping the worst would be over by then. I guess I will have to just find out the hard way. 

                  I see that you are a Vietnam War Vet. Is it possible that the skin issues have something to do with agent orange? My brother-in-law is also and he has multiple issues including eye from the agent. Just curious.

                  Best of luck with your health.

                  Melanie

                   

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