Duvilisib was great...until it wasn't

I took the Duvilisib for several weeks and was so excited that I didn't seem to have any bad side effects. I didn't go back to read what I wrote in the last blog, before starting it, but I had become aware that the FDA actually removed it from the list of approved meds for T-Cell Lymphomas because it has a very high rate of serious, often fatal, side effects. I felt it was my only known next step, though, so I decided to try it. Unfortunately I broke out in a very concerning rash. Itchy, blotchy, sometimes oozing rash. 

I got in to see my oncologist and she confirmed that I needed to stop it right away, go back on the higher dose of Prednisone, and hope the rash subsided. It didn't go fully away - especially areas that get sun like the top of my foot. Those areas are dark, patchy spots that don't seem to heal.

Interestingly, the oncologist (Dr. Mellott) said she thought I could go back on the Duvilisib, once the rash subsided. My reading doesn't agree with that. As another doctor warned me, most doctors don't study the info carefully. They stick to guidelines but "medicine is more of an art than a science." I have found before that she is not very careful with her opinions and, when questioned, can't support what she suggests. She goes by her gut, not necessarily research.

It doesn't make me feel exceptionally safe in just going along with whatever is advised. I also asked her if she thought I should think about meeting with someone like Dr. Steven Horowitz at Memorial Sloan Kettering in Texas, to which she said she would if she were in my shoes. He is a specialist clinician/researcher in T-Cell Lymphomas and, since I can't find Dr. Shustov anymore - he may be my best conventional option for another opinion. My get turns when I think about it though - everything I read is that he is very conventional. The treatment is brutal that he seems to espouse.

I have now returned from a 3 week trip to Namibia which was wonderful and a bit grueling. I am convinced my immune system is struggling. I feel (totally a feeling - not necessarily a fact) like the drugs I've tried and the Prednisone are weakening me. I keep getting cold sores, I was sick on the trip with a cold/flu which could have been covid, and the ENT suspects I have a recurrent staff infection in my nose that erupted into painful sores both in and out of my nose on the trip. I started taking Bactrim, which had worked before, but this time I had a huge reaction. I was alone and began to plan for what I would do if the itchiness in my mouth and throat progressed into a problem. I broke out into a rash that looked very much like a combo of the ones with Lomatium and Duvilisib. I was so so miserable; I took a ton of Benadryl to knock myself out. It didn't seem to help the itch much but it did help me sleep. The rash hasn't really gone completely away. I have blotchy, oozy spots. The itch is just like dry skin now, which is manageable. 

I go see the oncologist Monday for a scheduled appointment. I so want to get off the Prednisone but know I still need it. My joints get swollen, stiff, and achy if I forget to take it. The back of my knees and ankles swell.

Should I go see Dr. West in Boulder at Naturemed Clinic? I hate how her office operates. I don't feel safe doing IVs there. And it costs a fortune. But she knows the integrative approach to cancer so well. 

Should I go see Dr. Block in Chicago again? He has such a long history and has been helpful. I send people to his book when they are doing conventional treatment and want to know what to do in addition to it. I've been thinking about his analogy of "getting all the vectors pointing in the same direction" lately. He also stated that a more intense series of IVs such as a series of 3 high dose Vitamin C's with 3 Misteltoe in a week is more effective than spreading them out.

I love Dr. Raleigh from Restoration Healthcare but she is only remote now and I am suspect of all the HRT she has me on. I have a scheduled appointment with her next month. I will explore the possibility of coming to her Irvine center for a full week or so, monthly, for high dose intensive IV therapy and see what we can do to measure if it's doing anything. She also suggested high amounts of antibiotics awhile back for the staff infection once found in my nose. I freaked out on that idea and took the advice of a nurse from her office who told me that, especially if anyone has worked in a hospital setting, they all have these infections but the body manages fine most of the time. Now I'm wondering if I need to retest and possibly treat it aggressively. Remember too, Dr. Raleigh works hard to work with insurance, which helps so much to make this affordable to more people, which is very important to me. 

Do I do the Hypernourishment course with Dr. Garnder? It may help me get off the Prednisone but I find it very challenging to do only smmothies and raw food. 

Do I do what I did in 2014 - No dairy, gluten, fast often, Core Restore shakes? I lost a lot of weight and I hate how heavy and inflammed and swollen I appear to be now. 

Do I jump into Square One for 3 months? I don't think I can do the long term fasting again. If nothing else, I hate how much muscle tone I lose every time. And it's miserable. 

I'm tired and a little down right now. We've just returned from the very intense 3 weeks in Africa and hosting 40 people at the house right before that. I think I need some rest and prayer time. I know I"ve been led thus far in this health journey. I pray God leads me to the next steps that will be on the right track and will give me wisdom and peace in it all. 

Thanks for checking in. God bless you!!!!