Diagnosed with CLL in 2019.
Began treatment in 2021.
Finished 12 months of Venetoclax and Obinutuzumab 2022.
Had a CT scan last week.
All my lymph nodes are now back to normal!
Just thought that anyone faced with the prospect of treatment might find this helpful.
Sounds great! You must be ecstatic.
I was diagnosed in 2019 too and was told on Thursday that it's treatment time.
I'm 13q, mutated. Trying to figure out the best option for me - FCR or O+V.
How are your blood numbers? Were there any major "bumps on the road"?
I hope you have a really long remission 🙏🏻❤
I'm not qualified to advise but what I did before any treatment was to drastically increase my exercise regime. I cycle or run for at least an hour each day and I have some simple weights and stretching routines that I rigorously undertake for half an hour. My bloods with O+V have not changed over the treatment and apart from some diarrhea I didn't really have any reaction. I had a similar dilemma regarding treatment and took advice from a specialist Consultant at King's College hosp, given the various options I went for O+V simply because it is modern treatment and for a set period.
I'm 73 so should also add the term "run" in the second line is a bit misleading, more like "Old Man Hobbling"!
That’s fantastic news! Thank you for sharing that.
Stay safe,
Fran😷
Really pleased you’ve had such a good response, long may it last. I was also diagnosed 2019 and been on w&w ever since with little communication from consultants due to covid. I’m interested to know how it’s decided that it’s time for treatment?
Thanks for your kind reply
Not sure about CLL but I had Stage III SLL at diagnosis. In my case it was dependent upon the size of my swollen lymph nodes,. The most obvious one was on my shoulder over 100mm just before treatment. It wasn't uncomfortable but my haematologist decided I needed treatment. I have two sons who are hospital Consultants but not haematologists so no shortage of advice, plus myself with a science degree. But at an early stage for my own peace of mind I decided not to spend a lot of time researching the pros and cons etc. just found a haematologist I had confidence in.
Many Thanks for the info.just waiting for my Fish test etc. and going back to Consultant in June to discuss treatment.
O and V or Acalabrutinib ? the options depending on the mutations etc.
Fingers crossed I am 70 now,
WnW since diagnosis in 2018, reported by Lab. to have CLL since 2013.
I am increasing my exersice as much as possible, without losing more weight!!
Best Wishes and comforting to know someone as old as me responded so well !!
Pat
Hi Pat, I will be also starting treatment in June/July. Seeing my consultant on June 16th (Barts) to discuss treatment.
I was offered FCR or O+V. Acalabrutinib was not mentioned as I'm much younger (41) perhaps that's the reason.
Hope all goes well for you. Keep us posted please 🙏🏻 ❤
How about your CBC? It was all in range before treatment?
Yes I had the blood test last Friday in time for an appt with my haematologist next week. All within the normal range. I have kept a full spreadsheet of my blood tests over the last three years. Over that time I had 31 blood tests. Only on one occasion did my neutrophils go down to 1.4 (normal range 2-7.5) Eosinophils, Basophils and Absolute NRBC have been zero the whole time but no one seems bothered about that. One reason there have been so many tests is that they did a lot of monitoring when I first started O + V.
Thank you for sharing -- always great to hear such positive news.
Amen ! to that
GerryPLWhat fabulous news!! Thank you for sharing & best wishes for continued health & wellness~
🙂
Cookie
So glad to hear your good news. I was diagnosed December of 2019. I completed O and V in March of 2022. I have tested fish normal and negative for MRD. Hopefully we will have a very long remission.
Great news. I'm finishing my O&V at end of June, so hoping for the same outcome. The treatment has gone very well.
Thanks for sharing Gerry, it is great to hear and does provide hope to others...
Hi Gerry,
This is of interest to me. Just starting the 1st chemo and planned to start the venetoclax on 22 day which will be next week 17th may. Had a reaction to the first drip within 15 minutes and crashed but since then it has gone well. I have noticed a huge drop in size of the nodes in the jugular region since the start and the spleen has gone down as i now eat like a horse. It is planned for 12 months combined the a further 6 months of venetoclax. at 66 this should see me through for the rest of my days as mine was very slow growing and it has been 14 years. Have you experienced and effects from the venetoclax since the start and as the dosage increased? Hope things continue well for you.
Thanks for your reply, your treatment sounds exactly the same as mine. The first few weeks are the most risky so do drink a lot of water. I also stopped drinking any caffeine containing liquids. Being a boring guy I went into each infusion loaded with the same food - a box full of cold pizza and a packet of chocolate digestives. I know they are not on the 'healthy food' lists but who cares? I also took in with me a small flask of tea made with ginger and spearmint - very calming and refreshing. Otherwise I repeat my earlier post about exercise - I just gradually stepped up a bit from my normal routine. If nothing else it helped sleeping. Actually by my last infusion I managed to cycle in to the clinic - 8 miles each way. I think as you are going through the first few months in the summer is also useful. Hope all goes well.
Oh yes! Just signed up for this today! Thank you for taking the time to post.
Wonderful! Thanks for the encouragement!
Good news!! So happy for you!
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