OSU Trial Update Cycle 9, Day 1

[thompsonellen]

Hi everyone,

I got back yesterday from OSU. After 8 cycles are completed, they do interim testing, and so I had neck, chest, abdomen and pelvic CT scans, blood work and a bone marrow biopsy. Other than being a little sore where they did the biopsy, I am no worse for the wear. In fact, after they let me out, I walked downtown and among other things, found this amazing pastry shop. If you are in Columbus and find yourself with a little extra time, I absolutely recommend you go. laughlinsbakery.com/

(picture above)

The CT test results came back, and I now have only 2 lymph nodes in my abdomen that are abnormally large (2 cm v. >1.5 cm which is normal). While not perfect, given that the largest started out a 6+ cm, that is certainly progress.

It will take 3-5 days for the bone marrow biopsy test to come back and 7-10 for the FISH panel (a test that “maps” genes and documents defects). Given the fact that some lymph nodes are still enlarged, I’m not expecting to come back MRD- (no detectable cancer cells) but given the blood work has been coming back at .2% cancer cells, I’m hopeful I come back MRD+ (less than 1%).

Given the 17p deletion (which means I don’t make a protein that kills cancer cell) even one cancer cells spells trouble for me, so regardless of outcome, it is highly likely I will remain on meds after the trial, even though the goals was to hit us hard for 14 months and take us off. When 17p patients relapse, it happens “with a vengeance” and so I really need to try to avoid that at all costs, hence staying on the meds.

Most importantly, I’m 100% fine meaning there is nothing about my health that gets in the way of doing anything I want to do. CLL is supposed to be a chronic cancer and the fact of the matter is I’m OK with having cancer that’s manageable, in the same way that diabetes is manageable with insulin. So far, so good. I’m hopeful I’ll be able to say that for a long time.

[baq724]

Awesome post and you have such a great outlook! Hoping you get the results you are wanting!

[tekusa]

Good Progress.... Never had a BMB so my first (yet to come) has me nervous. Allowing lymph nodes to grow in watch and wait only to shrink them in treatment, sounds "counter-productive"! You are my favorite Phila. worrier! I'm in Reading PA and will be flying Phila. to Columbus April 11 for my annual check up visit at OSU. I will keep a look out for Laughin's Bakery. Best Wishes Tom

[thompsonellen in reply to tekusa]

I went from undiagnosed to treatment in 6 months and am 17p so everything grew practically overnight. They anxiety over BMB was worse than the procedure. The shoot you with lanacane which hurts for 10 seconds. Ask for more if it hurts at all when they tap your bone. It's most pressure you feel except when they suck the aspirate out which again is a few seconds of pain. In my case, they had trouble getting the aspirate out both times. As I mentioned, I walked a mile right after. I took tylenol PM the second time because it's a little uncomfortable at night. Anyhow, I hope you have an uneventful check up! Ellen

[Justasheet1 in reply to thompsonellen]

Of course you took the BMB in stride. You can't hurt steel.

🙏🏻

Jeff

[Valour in reply to tekusa]

Hi Tom my name is Vicki and my husband is Pat who was diagnosed with CLL with 17p deletion and we will be at our second visit to OSU on April 11 with Dr Woyach. We start a trial study in June any chance you will be in that study? This will be his first treatment of any kind so any info would be greatly appreciated. What is a BMB? Best to you.

[tekusa in reply to Valour]

Hi Vicki, I will be at OSU April 10th 2018. I wrote the above perhaps a year ago. I go once a year and always falls on second Tuesday in April. I have yet to receive treatment for CLL. I suspect treatment will happen for me in year or two since my CLL continues to mature. So I do not have information on the trial that Pat is to enter.

If you were to open a post inquiring about the Trial by "trial name" or number, and solicit information on personal experiences, you will likely get the feedback you seek. BMB stands for Bone Marrow Biopsy. It is a way to test for CLL cells in the Bone Marrow. I feel for you and Pat, getting into this journey so quickly. It takes time to get comfortable with all the CLL terms and information. I never met Dr Woyach, but from her videos I was impressed.

See the below link to see if the trial Pat is to enter is one of these.

clinicaltrials.gov/ct2/resu...

[UK-Sparky]

Hooray long may it continue for you, any one calorie cakes there?!

[ap64]

Glad things are going well. Love the look of the bakery.

[SandiC]

Glad things are going well. Which meds will you have to stay on Ellen? Wish you could get off them but glad you will just go on with things. I like you think of this as a chronic disease

[thompsonellen in reply to SandiC]

Choices will be made at the end of the trial. Best guess is ibrutinib, but that is just a guess. So far, I'm not resistant to it, but that could change everything, too. Hope you are well!

[maggiesgrandmom]

So glad to hear you are doing well. Let us know the test results when they come in.

[lexie]

I enjoy your progress updates. I hope your bmb and fish results come back better than expected. I am headed to OSU next week and again the following week and wondered where your best recommendation is for food. The bakery is out because of pre diabetes, sigh. Does walking to places there as a lone female have a reasonable degree of safety? I ask because the route I drive has me go through some areas that look iffy.

[pkpayne]

Great news Ellen! I'm so happy for you. And I'm jealous of those delicious pastries you've tempted us all with! Eat some for me!

[nvp815]

I so look forward to your updates Ellen. Glad things are going well for you. Your enthusiasm and strength are contagious!!! Keep up the amazing work!!

Regards,

Nan