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CLL Support Association
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1st week on venetoclax - WOW, not what we expected...

After reviewing jtaeross's post from 3 months ago I wanted to share our experience on venetoclax.

My husband just stared venetoclax 20mg we are on day 6 after failing on Ibrutinib after 18months and he is 17p, 52 years old - diagnosed at 45

It has been a hell of a week with threats of TML - he had to be admitted to hospital and was released on Friday - he can't seem to function. Blood levels and nodes are currently out of control. Hugh side effects, nausea, fatigue, low grade fever, diarrhea, water retention due to IV hydration and as you mentioned emotionally struggling . He feels worse then after 6 rounds of FCR.

We are back tomorrow to start 50mg and he is terrified - your post has helped us as most folks don't have these many issues. He desperately wants to see a change in the nodes to give him the confidence that the treatment is working. However he will need to be patient as our oncologist stated that it will take at least 4 weeks to see benefits.

You are not alone in your initial experience - this "odd-ball" experience has not be fun. Like you we didn't have a choice - fingers grossed that he will be able to get over this and next step is stem cell transplant.

Thank you for listening.

CANCER SUCKS ASS

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Patience is non existent when you feel so miserable. Hang in there and know you have a cheering squad behind you sending kind thoughts and prayers. Kindest regards, Sally

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Sending prayers.

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I am so sorry.

This disease can keep pulling nasty gut punches. First we're diagnosed and maybe reassured that 30% will never need treatment. Then if we find out that we're not in that very lucky group we're maybe reassured that chemo is effective for most. Then if/when that fails or we're not in that lucky group because of diagnostic markers or other conditions we're reassured that the new treatments are better tolerated. Then some of us have challenging reactions, or fail on those treatments. All of the reassurance we hear is well meant and true. But not always our experience.

It seems that every story of remission for decades has a fast decline in years counterpoint. It's really valuable to read posts about the challenges so that we have a broad understanding of the possibilities. It makes us better prepared.

I do want to share that sometimes even the dramatic, hospitalization required, initial reactions can be one time experiences. I didn't have that with Venetoclax but I did with Ublituximab and thought the doctor was crazy when he suggested continuing. But, it went well and I've had a great response, so again, it might not be your experience but there's some reassurance in case you decide to try again.

Thank you so much for posting and I wish you and your husband all the care and support you deserve. Blessings.

Dmary

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Well said DMary.

Sue

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Hi Dmary. Well said. I am fortunate as yet to be on watch and wait (long may it continue) but I know that all the stories I read on this forum have better prepared me for what MAY happen to me in the future. And if a wonder drug is found that halts this horrid CLL in its tracks?Then I am sure that I will read about it here first from Cllcanada HAIRBEAR_UK AussieNeil or other countless lovely people doing their best for us.Peggy

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Thank you Mary - wonderful message, we just need to remain positive.

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I sincerely hope the ramp up of the drug works better for your husband. I am so sorry he's had such a bad start. Things should improve herein.

My best wishes are sent.

Sue

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Ooh not a good start for you. I so hope that things will improve from now on.

Sending best wishes.

Peggy

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Thank you all for the responses and support - this community is very precious to us.

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Thank you for this post and may he feel better soon.

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Hopefully he is over the worst part, and the next dose escalation goes better. I start Venetoclax at the end of next month. My nodes are not that bad, so hoping I don't have any problems.

Best wishes

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I will pray for you and your husband especially tonight.

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I start on Venetoclax next month so this is good to know. Hopefully your treatment starts to go better. Sorry to hear about your issues.

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Btw. I am 52 and 17P deleted as well. I will keep you posted.

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I'm so sorry for the trouble your hubby is having NMMP. I really do hope things improve quickly for him.

Love and hugs

DebLea

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Hoping for a much better result for you the next go around. Hang in there and let us know how it goes.

BeckyL

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Hi I'm male 48 1 year on venetoclax and doing very well. Only sign of CLL is 0.08 percent in bone marrow last August. Probably 0.00 now I would hope. I have used fcr in 2007 and 2012. Bendamustine in 2013 and ibrutinib in 2014. I also failed on ibrutinib. Colitis. So the venetoclax with me is written here to try to give you hope. I started at 75 percent. I'm also conscious that hearing other people good news stories is seriously annoying when you are in deep shit. I did have trouble with Obinutuzumab and venetoclax. Pneumonia fatigue diarrhoea. First two months spent mostly in hospital and after that got better and better. I am sure your doctor knows what he or she is doing. Venetoclax seems to the very best. Especially for 17p. Both of you hang in there. Love from Corin.

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Cancer sucks, and so does your experience. I'm really sorry. I didn't experience those side effects but I can relate as a younger 17p patient. I assume he will be in patient the second week? I was. I really went bonkers in the hospital and I was out of town so on my own there, too. Tell him to hang in there. He will be in my thoughts, and there are other new trials so many this isn't the last step before a stem cell transplant (I asked last week and if ibrutinib and venetoclax fail, there are a couple of newer options).

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Hi. Are you on the venetoclax/ibrutinib trial at MDA?

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I'm in the obinutuzumab/venetoclax/ibrutinib trial at OSU.

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How are you doing? Is this your 1st treatment. Or have you failed other treatments? My husband is on the venetoclax/ibrutinib trial at MDA. He's had a rocky start due to ibrutinib causes atrial flutter. That's been addressed and he's back on lower dose. Just now adding the venetoclax. Wondering what kind of side effects he may encounter with venetoclax.

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Yes, it's my first treatment. I feel like venetoclax has less side effects. I hope that is the same experience for your husband.

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Thank you for the encouragement - he is certainly doing much better and started 200gm today and feeeling better than he has in a long time. Right now he is focused on remaining grateful and dealing with the emotional impact of the past 3 weeks.

He will be discharged tomorrow and back on Monday for blood work.

It really is one day and one step at a time.

Take care

NMMP

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So sorry to read this. I'm hoping by now your experience with venetaclax is much calmer. I'm thinking going in with 17p and a few pegs knocked down may be why. I had a rough induction phase but it didn't come close to yours. I was put in hospital each time the dose changed and poked and blown up with massive bags of fluid till I thought I'd explode. A gain of 6-7 pounds a day! But that subsided. Other than continued high surveillance at home, weekly bloods and occasional infusions of Rasburicase the side effects are tolerable Nausea remains if my gut is empty and my appetite isn't great but I have a few other problems so may not the venetaclax. I hope not. I just told my doctor, dr Josh Brody at mount Sinai ny, that I don't want to go off of venetaclax no matter what.

No doubt venetaclax isn't ready for prime time. We're lucky to have it as a last course but it's not something new patients should wish for right out of the box. At least not till it's tried in that setting - if and when. One does wonder if those less beaten down might fare better?

If Venetaclax works by chewing up cll cells at an alarming rate. Hence the risk of tumor lysis. If there were very low levels of cll it would be curious how it would behave. We'll leave that in the lab.

As a reference, I began around the end of oct having failed both idelisib and IBRUTINIB miserably with a tumor load of 90% cll in my marrow, an atypical non leukemia lymphoma neuts were .4 They're now 3.2 Any other bloods won't look like cll to anyone and my point is they say it's doing what it's supposed to it does take time despite its speedy ways

Patience comes hard at times like this but I'm sure we all cheer you on Hang in there

Best, beth

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My husband is in the middle of FCR and he is very young. Second episode of grade 4 FN. In the hospital

I totally understand your experience and feelings

Is Allo-transplant in your partner plan after venetoclax? Hold on

Was he 17p from the start?

A

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Thanks so much for your post. So many of us are helped by reading these experiences. I hope that tomorrow goes much better for your husband.

My Doctor has suggested we talk about switching to Venetoclax at my next visit (3/27) .

To say I was shocked would be an understatement. My bloods are good...as though I do not have CLL, and there are no nodes (at least that I know of!). He did say that this would be a good time to make the switch because of the state of my disease. I have been on Ibrutinib for 23 months. I am having some kidney issues, so I am wondering if that is the reason for the switch. Venetoclax sounds like it may also affect kidneys, so that leaves me with many questions. My next visit will be interesting.

I am not sure that I really understand what is meant when people mention they "failed ibrutinib". Does this mean that your disease started to progress, or that the side effects were too detrimental, or both?

Wishing you all the best of luck at your husband's next treatment.

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It can be both and there was a breakdown of the various reasons patients discontinued Ibrutinib published recently.

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Thanks ...found it.

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I am 55 years young and got diagnosed with CLL/sll when I was 46. I also have 17p. I had to stop Ibrutinib after 2 years on it because the ibrutinib gave me ventricular tachycardia. I will begin venetoclax in a week or so. I also hope venetoclax works without issues as my next step would b a stem cell transplant. I hope/pray that your husband has gotten better.

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Hi Buster-Brown,

He certainly has gotten better and I wish you all the best on your next steps.

One thing that has helped is that we introduced Rituximab with V and he will be receiving 4 rounds of it. We have already administered 2 and he will have another one in Sept/Oct. The impact has been huge - especially with the breakdown of the nodes

Our biggest concern is since he failed on ibrutinib so quickly that he will fail on V - therefore we are moving forward with a stem cell transplant (which is terrifying) and are currently scheduled for transplant the week of Nov. 8th.

Take Care and sending lots of possible vibes.

NMMP

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I will keep u both in my thoughts and prayers!!

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