When the rubber meets the road

I got sick the end of October and feel like I've been fighting a battle with my body since, with a very cherished break in January during which I hosted dear friends. I felt pretty good that month with lots of energy, thankfully.  February had me feeling like I was racing the clock. The lymphoma appeared to be "taking off," the way the doctors had predicted. I could have gone into the hospital and started CHOEP chemo but I was hoping to make it till I could start the clinical trial. I would picture myself trying to get on a moving Merry-Go-Round that would moving too fast. Would I make it? I couldn't get in to see Dr. Haverkos until mid May. I was so so happy when I started it - it's just a simple combo of 2 drugs as I think I've described before.  Unfortunately, I started feeling worse and worse on it over time. I was scared to tell them how badly I felt but I was honest.  After meeting weekly with the clinical coordinator (Celeste)  of the trial and various ...

 I'm still adding the anti-nausea meds slowly. I think the one I take at bedtime is making it really hard to wake up in the morning. I doesn't seem to help me fall asleep, however.  I noticed some itching in the late afternoons/evenings a few days ago and it has increased until last night I more fully realized - I am getting no simple answers here. The rash is hot, raised, itchy, and red. It is worse on my arms and thighs and makes getting to sleep hard.  Dr. Haverkos thought the rashes would subside with treatment. We really have never known what triggers them or brings relief. They also look like the RA rash. I have some arthritis but who knows. I have had people suggest everything from changing to Irish Spring soap to taking B1 supplements, to Calamine Lotion. I've used the prescription medications and lotions. Nothing really helps - but some things like baths full of oils and salts and such seem to distract for a bit at least.  I did start something today suggest...

Since I use this blog as something of a medical journal, I thought I'd write down what has changed since a zoom appointment with a PA at the oncologist in Aurora, Kelly something. She specializes in the nausea problems for their cancer patients. I'm so conflicted as they stack medication after medication, advising me to not to start back taking any supplements, when it is common knowledge that some of these meds deplete the body of certain vitamins and minerals. No wonder so many patients go down hill.... 1st thing at wake up:   Levothyroxine 150mg. (I had my thyroid ablated with radiation many years ago because of out-of-control goiters)  Liothyronin 5mg  1/2 hour later - before breakfast take Omeprazone 40mg for stomach. I'm so uncomfortable with these drugs -  (Not starting yet until see how Olanzapine works) - at least 2 hours before or 4 hours after study meds.  1 hour later take Ondansetron (Zophran) - 4 - 8 mg. (currently taking) With Breakf...

I've just been ... getting through day by day. Dr. Haverkos warned the first few weeks of the trial could be rough, alluding to another patient he feels is similar to me - who he thought he'd have to hospitalize and put on chemo to shrink the lymph nodes piling up in his neck during those first weeks. He was very sick with die off too, but it wasn't happening quickly enough to make it safe. Fortunately he made it and it helped me those first weeks. I am now 6 weeks in, however, and I still almost always feel like I am just sick.  The rashes have subsided; I am so thankful. That was replaced by what I describe as a pinched nerve-type thing in my neck that has been driving me crazy for weeks now. It sometimes isn't there, but mostly is. Massage and icy-hot remedies give me temporary relief and my sweet hubby has been so patient and helpful with it. But it comes on and can make functioning pretty hard. I take Advil or Tylenol periodically; they don't always seems to he...

That is the question that goes through my head. It feels like I am made of concrete, walking through mud, and that I just can't support my own frame. I just crave to lay down most of the time.  I started the new medications Monday, the 18th after 40 vials of blood being drawn and meeting with Kelsey Watson, NP who works with those on the trial. Interesting that they have less formality in their protocols than the other times I tried "targeted drugs." Each time they make you meet with a pharmacist for "chemo teach," detailing what you should do if you get different side effects, and teaching you all about the drug. None of that this time.  The drugs are interesting. The anti-viral (Valganciclovir) goes after the Epstein Barr Virus in the cell. When the HDAC inhibitor, Nanatinostat,  then interacts with it, the anti-viral becomes cytotoxic (kills cancer) and the cell dies. It is not traditional chemo that kills all newly dividing cells, healthy and not. Targetted ...

Thank you to so many who have reached out with support. When I hear a person is praying for me ... it helps turn fear and doubt into knowing I am safe. I am very very blessed!  Yesterday was a challenge to get through but we got some really good messages from Kelsey Watson, NP and APP (Advanced-Practice Provider). She's worked with others in this clinical trial and had lots of very encouraging things to say.  I asked her about the implications of them finding the lymphoma in my bone marrow for the first time. I know this makes the lymphoma Stage 4. I've always been Stage 3A (lymphoma found above and below the diaphragm) or 3B (when I've also have "B" symptoms like night sweats, fevers, weight loss). I purposefully didn't get online to look for data since finding this out a few days ago. In the past, I've found things out I didn't have the heart to share with anyone else and I don't know if that's good for me. Even the data for this clinical tri...

I don't generally go back and read my posts before writing a new one so please forgive me if this is redundant.  It has been a very tough time.  I think about how I've generally felt well since diagnosed 7 years ago. I have met people who were sick right away. I have met people (and have gotten to know many on social media) who were diagnosed similarly to me through biopsies with a swollen lymph node or two) who were sick because of the treatment prescribed, many getting the bone marrow transplant(s) once in remission, only to relapse and even pass. They've been through hell. To be honest, I have not run across any others with AITL who have done the "let's wait to see what my body tells me" strategy I've used. I've tried 3 targeted drugs I couldn't tolerate. I've found myself wondering if I gave them enough of a try.  In December I seemed to tank. I felt terrible, had the horrible rashes, felt bad, and the lymph nodes in my neck grew extensivel...