When the rubber meets the road

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 ...

About 2 years ago, right at the beginning of the pandemic, I went to see Dr. Shustov in Seattle. On an lymphoma Facebook group, several people had talked about him as a specialist in T-Cell Lymphomas who, although he is a main-stream researcher and clinician, seemed to listen and use more common sense than the usual oncologist/hematologist who just goes along with the Standard of Care treatments, even though they all agree that they really don't work for most with T-Cell lymphomas.  Dr. Shustov spent a very long time with Andy and I, explaining the mechanisms of AITL, what the treatments really do, how very dangerous bone marrow transplants are, and what he might consider. He suggested I try a drug he was involved in developing and that he had been using with his elderly patients that he didn't want to put through cytotoxic chemotherapy and possible transplant. He claimed he was getting terrific results.  He has since left his practice and my oncologist, who I like but who I t...

I woke yesterday morning with no anxiety and even a lightness in my step I haven't felt lately. The day before, out of desperation, I took my Bible outside and bundled up in the sun, only to find myself actually meditating and praying for a very long time. It started as I fell into Psalm 40, which a person shared as "her psalm" many years ago when I was working through a 12-step program for codependency.     I waited patiently for the Lord; And He inclined to me, And heard my cry.  He also brought me up out of a horrible pit, Out of the miry clay, And set my feet upon a rock,  And established my steps.  He has put a new song in my mouth -- Praise to our God; Many will see it and fear,  And will trust in the Lord. It was strange to have absolutely no urge to open my eyes or move to some other activity. I watched my thoughts come and go, focused on my breath some, and did some Ho'oponopono - style prayers, which have helped me greatly lately and in the p...

Hi!  It's been a long time since I posted. This is a reflection of how I've been dealing with the whole lymphoma thing. In many ways, because of Prednisone and the unusual stability of disease I've experienced, I've been able to live like I don't have anything going on. I essentially eat and drink what I want, live a normal life without the constant taking of hand fulls of herbs and supplements, time-consuming juicing, enemas, saunas, IVs, etc... I'm desperately trying to get more exercise because I can feel my body weakening when I exert myself, but it has been a challenge. To be honest, and I've tried really hard to be honest in this blog, I'm not feeling well these days and, while I'm trying to be kind and gentle with myself, I'm often mad at myself over it all and wonder what the heck I'm doing.  I know I have been blessed with stability of this disease when the doctors warned me from the beginning that we should not wait to jump into sta...

It's been a tough few weeks. Andy and I both contracted Covid, probably the Delta Variant. As a T-Cell Lymphoma patient, I investigated mRNA treatments early on and the best specialist I could find told me to steer away, having something to do with the mutations I have of CD4 and CD53, related to the cancer. Again, I have the 'benefit' of personalized information, I suppose. Now I'l have natural immunity, at least to this variant. Funny how the science is showing that it lasts at least several months but we can't use it to gain access to the world like record of vaccination, which is showing only spotty immunity and now boosters are needed.  So...as I've consulted with my current oncologist, the DO who has helped me so much, and others, I have hesitated to take the vaccines. I also have a young man I know who got the cardiomyopathy, a person at work who possibly lost her husband to a reaction from the vaccine, and a dear woman whose heart was fine (allowing her ...

It is so confusing sometimes - to me, and I know to others. What the heck is going on?  I am not in remission but the Lymphoma does not appear to be killing me. The standard model is that if you have cancer, you need to cut it out, burn it with radiation, kill it with chemo, or use an immunotherapy (that is not as innocuous as people tend to think). But, what if it is there but it isn't killing you?  I'll admit, it takes a lot of faith to not really know. You have a scan or bloodwork or whatever, but it could "ignite" the day after and you'd be in trouble, right?  As I've shared here, I know I have been fortunate. I have met people and am in contact with many who were so sick right away that they didn't have choices. On the other hand, I am also in contact with people who were like me...diagnosed with swollen lymph nodes and biopsies, symptoms that are bothersome like night sweats and swollen hands, feet, joints... I've had some rashes. They are jumped...

 Hi!  After a set of 3 weekly IVs and then a set of 2 after a week off, I have decided I have to stop the Romedepsin. My oncologist is amenable to just about anything I want but I could see yesterday that she was hesitant because ... well, it's working. The swelling in my tonsils and lymph nodes in my neck are noticeably smaller. I am down to about 8mg of Prednisone with no swelling or pain in my joints. But...I just feel lousy all the time and I just can't deal with it anymore.  It's similar to being pregnant when you feel generally unwell, suddenly need to lay down often, and feel better while eating whatever you feel like - only to feel bad again a few minutes later. My muscles feel weak and jittery inside. Lousy. The oncologist is insisting on a new PET scan to document where I am at, "In case we need to know how Romedepsin worked for you in the future - if you need it." I will wait to see if I need to start the Duvilisib, the oral pill suggested for me by Dr....