I am very pleased to report I am still MRD undetectable in the blood and bone Marrow after almost 1 year!!
My Doctor prefers to say MRD- undetectable instead of MRD Negative.
I am most likely on a placebo. Per the trial I am on either a placebo or imbruvica. I am Very very sure a placebo given the fact that my side effects went away. Imbruvica can has some side effects...:). My nails and finger tips have gotten so much better!!
Over all I feel good. I have done a couple nice ski trips this winter so far. I am some times tired but I use to be that way before CLL as well. My Cpap really helps my sleep as well.
I continue to eat Vegan with a lot of good vegetables , fruit and nuts. I drink a lot of high quality green tea and drink juiced tumeric and wheat grass . I want to eat foods to hopefully fight cancer cells- not encourage them... I try to get a lot of sleep and exercise as well. I recommend movie "Forks over Knive's on Netflix and the book the China Study and Whole if you want to know more. Also the book N of 1 by Glenn Sabin. Being Vegan is also very good for the planet!!
I feel very fortunate, lucky and bless that I got to the I plus V trial given my 17P deleted, Trisomy 12 complex karyotype Unmuated Cytogenetics.
So far so good... I hope it lasts!!!
Be well, Thanks,
Hoffy
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Hoffy
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I should add that I really don’t know if the vegan diet helps a great deal or not. Time will tell.
I do know that a little over 50% of people have achieved MRD negativity after the original protocol.
So I feel very fortunate that I got to MRD negative and got the placebo.
It is very nice to have a rest from the drugs.
Hopefully this will be the new protocol in the future where patients take a combo of targeted drugs for about a year and then get off all drugs for hopefully a long period of time Or maybe I dare say curative...??
Hoffy - I am so thrilled for you! Your journey has been such an inspiring one. I think so many people have been waiting with bated breath to see what the results will be for these clinical trials. Your news is so encouraging for all of us. Big congrats!
Hi Hoffy, One toward after this treatment ended do bone marrow stem cells repopulate the blood with normal B-cells and inmunoglobulin levels return to normal? I’ve been trying to find this answer, but haven’t read anything about immune system recovery after this amazing treatment to kill CLL cells.
Thanks for any insights you might have as a front line warrior in this study!
Sadly this doesn’t always happen well at all. Neutrophils often stay low for ages and even before treatment typically our normal lymohcited and not great at producing new amtibiodirfd to things they’ve not seen before. Our T cells were exhausted before treatment and are worse now. And hopefully then neuts are a bit better off this is why many CLLers both before during and after treatment often end up on IVIG. It seems
To
Me that as the disease progressed presumably the
Plasma cells are not replaced to our total IGG just goes slowly down. Happening to mine as I speak...
Not to say some
People
Don’t see some improvements some point. But remember our treatments all kill normal and healthy lymohcitee alike
And if they start to grow back the risk is the dodgy ones
Come back at least as much as the good. And so for me I’m
Always happy to see
My Lymohocutr count almost zero don’t want to see it rising just yet!!
Just to say people do say that ibrutinib becomes better tolerated over time in many propel so maybe you are still
On it after all! But either way MRDU is great as I know myself. Tho how are you actually feeling? Sadly for me the fatigue whilst better hastny actually home away.
I am very pleased to report I am still MRD Undetectable ( UMRD) in the blood after 2 years on a Placebo!! I know it is a Placebo becuase the imbruvica side effects totally went away. Imbruvica can have some side effects...:). My nails and fingertips have gotten so much better!!
I am now ~ 3.3 years ( 41 months) on the Captivate Clinical trial out of UCSD.
Over all I feel very good and normal.
I have had a ear infections and a toe infection over the last year but nothing antibiotics did not cure quickly. I have some itching occationally.
I try to keep a healthy life style with plenty of sleep ( ~8 hours pef night) and low stress.
I have done a couple nice ski trips this winter so far again. I am some times tired but I use to be that way before CLL as well. My Cpap really helps with my sleep as well.
I continue to eat mostly Vegan with a lot of good vegetables , fruit and nuts. I drink a lot of high quality green tea and drink juiced tumeric and wheat grass . I drink 3-4 glasses of strong green tea in the morning till about 2 pm and then drink Juiced tumeric in the afternoon with OJ. I drink Turmeric giner Tea as well and take some Turmeric supplements in the afternoon ( but not that often). Green and Turmeric oppose each other so that is why I separate them.
I want to eat foods to hopefully fight cancer cells- not encourage them... I try to get a lot of sleep and exercise as well.
I recommend movie "Forks over Knive's and the "Game Changer's " on Netflix and the book the China Study and Whole if you want to know more. Also the book N of 1 by Glenn Sabin. Being Vegan is also very good for the planet and animals ( good Karma)!!
Since I am mostly Vegan I take Vitamin D once a day ( 5000 IU) and B12 (2000 IU) once a week. I also started taking Vegan Omega 3 EPA/ DHA made from seaweed ( that's where fish get it too!!) When possible I try to get most of my nutrients via whole food.
I eat 1 Brazil nut a day to have a good Selenium level ( only 1 nut a day or my level gets too high). I have my B-12 and Vitamin D tested once a year. I am told too much Vitamin D can be problematic. As a Vegan it is good to take some B-12.
I feel very fortunate, lucky and blessed that I got to the I plus V trial given my 17P deleted, Trisomy 12 complex karyotype Unmuated Cytogenetics starting with large nodes.
Dr. Kipps says that based on my CBC blood work no one could tell that I have CLL.
I did feel a small node ( < 4 mm) that came up about a month ago up but it appears to have gone away mostly ( < 1 mm).
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Dr. John Allan - Chronic Lymphocytic Leukemia (CLL) Patients @Undetectable Measurable Residual Disease (MRD) after Ibrutinib Plus Venetoclax
Captivate Trial MRD status
Imbruvica plus alcohol or amitryptiline yields Afib?
