last tablet

[Hilo13]

hi today ( Monday ) was my last Venetoclax tablets . It has been a 12 month journey with thank goodness not too much drama . I won’t miss the nausea in the morning that’s for sure and am looking forward to having marmalade again . I just hope I can taste it as after 3 and 1/2 years of escaping covid my husband brought it home and I have had it since Saturday. I feel pretty rough but am keeping an eye on my temperature etc. I rang the service in wales to ask them about what I should do they said nothing and didn’t offer paxlovid or anything in fact the attitude was it’s only covid get on with it fingers crossed I don’t get to regret that conversation .

I am on day three now so am hoping that another few days will see me through it.

Thankyou to all those who have been kind enough to advise and encourage me and I wish all those on their various journeys good luck .

[Stavrou1]

Hi Hilo That's great news 👏 , your 12month treatment is done today , And didn't have to many problems. Do you have to have to have a body scan ....I am due to finish in November. I have ask 3 different Heamotogist 2 say don't need a scan and one says yes !! . We shall see...

Sorry you caught covid after all this time . . My Heamotogist was saying the other day there are 2 variants, and to be very cautious around people . We are all careful as can be be to protect our self , but sometimes still not enough . Others bring it home .Hope passes by with out to much problems . Good luck . Enjoy life . We all deserve it. 😊

[Hilo13 in reply to Stavrou1]

Hi yes had a Ct scan about two months ago all looked good my bloods are good too wishing you a positive outcome

[Stavrou1 in reply to Hilo13]

Thank you for your reply. And your kind words .Really happy for you . ☺️

[MickUK]

Congratulations on finishing your treatment and commiserations for catching the dreaded COVID. Fingers crossed for you!

[Hilo13 in reply to MickUK]

Thankyou

[Thundercat2]

Wonderful news Hilo. I finished in February this year and it's been very nice! Hope you put Covid behind you quickly!

[Hilo13 in reply to Thundercat2]

Thankyou

[GD-K]

Hi. Sorry to learn you have covid. I do hope you recover quickly. I'm sure you will.May I ask a question. I have been taking Ibrutanib for 2 years and apart from extreme fatigue I'm not feeling too bad and my bloods have improved radically although still not 100%. My specialist is suggesting I change to Ventoclax but I'm really not sure about it mainly because I understand that if Ventoclax doesn't work for me I can't go back to Ibrutanib. It sounds as the Ventoclax has been successful for you . Is sickness the only side effect. Hope you don't mind me asking and I hope Covid passes quickly for you.

[Hilo13 in reply to GD-K]

Hi yes it was nausea for about 2 hours in the morning I tried changing the time I took the tablet but returned to the morning as it passed as soon as I had my lunch. O and V is the first treatment I have had and has proved successful.I am not sure about other medications. I hope you get the answers and the positive results we all crave .

[GD-K in reply to Hilo13]

Thank you for taking the time to reply. Very helpful an positive.

[Confetti77 in reply to Hilo13]

I am on month 10 of venetoclax now on a first line ven&o treatment. Almost daily nausea. Seems having a higher protein meal vs a carb meal helps. As does a bigger meal but you never know for sure.

I need way more sleep too. If my Fitbit registers any less than 8 hours asleep I’m really tired.

My other side effect is stiffness, muscle and joints. After 2 hours in a car my 75/79 year old parents walked way better than I. When I loosened up in a few minutes I was fine and well ahead of them but I was worse to start.

My energy is down but some days ok and I push a bit too hard and then I am couch bound for 3 days.

I am hoping that this all cures itself when venetoclax finishes.

[Hilo13 in reply to Confetti77]

I must admit that the treatment wasn’t a quick fix I would say that gradually without really noticing my fatigue has got less I am still not back to full energy levels but as I’m a year older I put the aches and pains down to age . retrospectively I would say there is an improvement Hang on in there fingers crossed you will see improvement. Good luck

[Confetti77 in reply to Hilo13]

This is so interesting. I wasn’t fatigued or stiff or nauseous before all of this, so I chalked it all up to our drug regimen.

A gal who started same day as me but couldn’t continue due neutrophils said the stiffness went away after a few weeks. Fingers crossed!

[Skyshark in reply to GD-K]

The idea of Venetoclax monotherapy sets alarm bells ringing.

Can't tell where you are located.

If in UK on NHS (like Hilo13 and moi) you can't have VenO as 2nd line, it's only approved for 1st line. Ven monotherapy is usually saved in NHS until last ditch EOL (last paragraph of NICE recommendations). Usual 2nd line after BTKi has been exhausted is 24 cycles VenR and a hopeful 2-3 years off treatment. It's more effective in combination treatments and it's also possible to develop resistance when taken long term.

nice.org.uk/guidance/ta796/...

Nothing on the NICE recommendation says it's not allowed to have Ibrutinib if previous Ibrutinib or Venetoclax. People are expected to take Ibrutinib (and other BTKi) until relapsed/refractory or intolerance, then it's not possible to continue with BTKi. A non covalent BTKi Pirtobrutinib is in NICE development. No date yet, estimate late '24 or early '25. Expected to win an extra 2 years after R/R BTKi. I have seen recent posts that this can be obtained now on compassionate grounds in both US and UK but that maybe only after BTKi and BCL-2 Ven are exhausted.

nice.org.uk/guidance/ta429/...

Or switch to another BTKi, Acalabrutinib. It's supposed to be at least as effective and have fewer or less harsh side effects.

nice.org.uk/guidance/ta689/...

If in US it's possibly anything your doctor can persuade your insurance to spring for.

"Down Under" watch the Sept 1st webinar that CLLerinOz recently posted about, there may be new stuff.

healthunlocked.com/cllsuppo...

[Floxxy]

Very well done for getting through it. I'm on V and R and have another 18 months to go. Marmalade and satsumas are the things I crave. X

[Livingwith67]

Great news, I hope you will celebrate the end of the treatment, once the horrid covid has gone.

Covid seems to be much easier to pass on this time around. I’ve just been through it and my family have all caught it this time. This never happened before, we all got it individually months apart.

Here’s hoping you feel well again very soon

[Smakwater]

Enjoy not having to take the pill every day!

And a high quality remission.

JM

[Hilo13 in reply to Smakwater]

Thankyou

[SeymourB]

Hilo13 -

With loss of smell and taste, what little advice I've seen appears essential to keep trying to smell and taste a variety of things. I used perfumes and essential oils.

healthline.com/health/how-t...

=seymour=

[Hilo13 in reply to SeymourB]

Thankyou I’m going to give that a try 👍

[FiArt12X]

Congratulations, I hope your recovery from Covid is quick and complete. May your remission be a long one as well.

[Hilo13 in reply to FiArt12X]

Thankyou

[Bill1288]

Hilo13: Did you low platelets during your 12 month treatment?

Bill

[Hilo13 in reply to Bill1288]

Yes I had low platelets but they monitored me and I didn’t need treatment my neutrophil count went really low so had injections for a little while . It was a long 12 months editing for blood results to come back but worth it I’m hoping my next bloods ( October) will be good . Hope this helps

[Bill1288 in reply to Hilo13]

Thank you for your reply. It really helped. My platelets dropped to 36 but are at 50 as of yesterday. I am being closely monitored. Have AFIB and am on eliquis. Was told to stop eliquis until platelets get back over 50, Doing ok so far. Thanks again for your reply.

Bill

[Stavrou1]

Wish you all the best. Sorry to hear you didn't escape covid, buthope you make a quick recovery. Enjoy marmalade . One thing I am still craving for Take care