If you are feeling well, you might be starting at the right time while your body and bone marrow still have some reserves to be used. You should continue feeling OK, it depends how you will feel when on Venetoclax. I am in cycle 9 and I felt really crap when I started and it just got worse before my bone marrow cleared. I kind of wish I had started when I still felt ok. Type Venetoclax and Obinutuzumab into the search window at the top, you will have plenty to read. All the best.
I'm am just getting ready for my last O infusion. I have had a super easy time with this treatment. The first month is the worst only because it is 2 infusions the first week, one infusion for the next 2 weeks then just one every 28 days. I never had any issues with any of it. I sleep for most of the infusion because they give you Benadryl before it starts. Take plenty of snacks or a lunch. As far as the Venclexta I just take them with dinner at night. I don't feel anything from them. I do think most people find taking them in the evening with your meal works best. Best of luck to you. I hope you have an experience as easy as mine has been. My first infusion I felt my chest get a little tight so they stopped it gave me extra Benadryl and started back up in half hour. I was fine from that point on.
so great to hear how well things have gone for you . I read everything you said with much interest .The tip about the snacks is so welcome and have heard that taking the Venclexta in the evening with food is preferable.
thank you so much for taking the time to give me so much practical advice it has all made such a difference to ease the anxiety of the unknown.
You are so welcome. My best advice to you is to relax about this treatment. It really is kind of a breeze. I know we are all different but I think the majority of people have an easy time with this treatment. I haven't missed a day of work except the day I go for infusion. I live a completely normal life. I do try my best to avoid being around sick people if I can. So far so good haven't had as much as a cold and I'm not overly precautious. I do wash my hands often and keep a mask handy if I'm in a crowded place. Hope to here from you once you start treatment and that it's going great.
You are so welcome. I am still doing well besides having COVID. LOL I don't have any symptoms though so that's positive. I imagine you are probably getting very anxious for next week. Just remember "if" you have any issue on the first infusion don't get discouraged. That first one is usually the only one people have a few bumps with. I am 6+ months in and still have no issues with this treatment. It truly has been so easy. My biggest issue is my own anxiety. I am trying my best to calm down and not even think about it. I halve to say it is getting easier everyday. I am so excited to see how you do and will keep you in my prayers for an easy go of it. Keep me posted.
As you say anxiety is my worst enemy too and I too try not to think about it and just lead normal life as possible. Sorry you have covid I hope it doesn't get any worse
I have my booster next week before starting treatment. I have taken on board what you say and the team have told me pretty much the same that the first infusions are more likely to cause problems while your body adjusts.
I do actually feel that now is the right time to have treatment as am getting more tired and lumpy with the lymph nodes getting larger.
being 6 months in and no issues is fabulous and am sure a lot of that is down to your positive mind set .
i will indeed let you know how I progress and my very best wishes
sorry I didn't reply earlier it's been a tough week.
my treatment was meant to be next week, but there has been a delay as I had to wait for 10 days after my Covid Booster and then I picked up an infection in the colon which was caused by my diverticulitis ! I think my husband and I need a season ticket to the hospital. Had to have 5 days of antibiotics ( metronidazole) to clear the infection and with all these bank holidays in the UK and strikes some staff have not been available.
Feeling ok just want to get on with it now as am getting tired and a bit light headed if I do too much.
Have you heard about antibiotics affecting treatment in a negative way/
I am so sorry to hear this. As far as antibiotics I don't believe there is any issue. I had a UTI right before I started and was on antibiotics. It didn't hold anything up. So is the plan to start this week? As far as me I'm all good now. COVID is gone. I will be having CT this Thursday for a six month check up. It gives me anxiety but I feel great overall.
my first treatment back in 2016 was chemo but things have changed . I’m looking to start my second lot of treatment but waiting for pet scan results to see if my CLL has transformed. Good look
I'm the same as you. I was diagnosed 2018, had FCR in 2019 and get the results of PET scan on Monday and which 2nd line treatment I will be on. Probably V&R or acalabrutinib. Good luck to you. I hope it goes well. X
I worried beforehand, especially reading about some side effects people have had, but have been on acalabrutinib for nearly 4 months now and I've had none of those side effects. I feel I have more energy. I do hope things go as well for you.
I finished your treatment a year ago and it completely cleared my advanced CLL. As to effects during treatment, talking to people as we were treated it varies hugely so any comments need to read in that light. For myself I had diarrhoea on and off for most of the time which was a nuisance, particularly on a bike ride! Otherwise I stuck rigidly to the proscribing advice and had very few effects. Indeed after a couple of rounds of treatment I continued all my regular exercise programs and just lived a normal life.
I have been on acalabrutinib for six months now and,apart from some stomach issues, have had no side effects and my white cells have gone from165 to 19 and other counts almost normal - what treatment are you having as this one is amazing and works!!!!! Good luck
I had O+I when i was diagnosed stage onall went well , all day sessions was never admitted to hospital , no issues at all except I had covid after 3rd cycle so 4th was delayed 2 weeks. Once O cycles finished moved to daily acalabrutinib and was in uMRD in 240 days. I had IVIG and Filagastin support during the winter as a precaution as I live a pre CLL and pre Covid lifestyle.
bad luck to get Covid , but hopefully you recovered from it without too many problems?
MRD after 240 days is fantastic you must be happy with the results and long may it stay that way for you.It's so good to hear of people living a pre CLL life that is my aim
Depends on your haematologist. The days of chemotherapy are no longer the norm. Nothing to worry about. I was first diagnosed 4 years ago. Apart from a couple of bouts of anaemia all fine. They eventually put me on a drug called Calquence last October and I am now in remission. One of my friends a retired haematologist first said to me ‘If you are going to get leukaemia CLL. Is the best one to get’ Hope that helps. And all on the NHS
I have heard the same as you that CLL is a more manageable disease with many treatment options. Yes the word chemotherapy does fill people with fear as the treatment is often worse than the illness , but as you say having been on Calquence has worked and you are now in remission which is great news long may it continue for you and it does help a great deal.I have had some fabulous replies from the 'HealthUnlocked family for which I am most grateful and yes all on the good old NHS
I started treatment with Acalabrutinib in August 2021, three years after diagnosis. My white cell count was 250 and my consultant couldn't believe why I didn't feel ill or overtired. My last blood test showed that both red and white cells are within normal ranges and everything else is fine. I am now almost 71 so guess my treatment choices were limited but Acalabrutinib is surely my best friend!!
Thanks for sharing, I am very interested to hear of your and others experiences. I am in the same position. I'm being managed by the Marsden. Been on W&W for 5 years and should have started the O&V programme by now, however I have a slipped disc and treatment has been delayed. My WBC is just under 100. I am back for a review later this month. I do agree with comments below that it's best to start whilst still fit and active. Fingers crossed for you that you get no significant side effects. Would be very interested to hear how you get on. Good luck.
Hi. If you are feeling well, why does your MD want to start treatment? My white count is 220. My platelets are normal and my hgb is low normal. I just saw a specialist that said I should not start treatment yet. Just wondering what is triggering the need to treat. Did WBC double quickly?
yes my WBC doubled in 6 months .Had a CT today to see how my spleen and lymphnodes
are fairing . I felt exactly the same thinking why am I being treated, but think it was just
because I was scared, but after having some really positive posts and talking with family and friends I think maybe is the right time for me. I have also had kidney cancer some years ago
and only have one kidney now so might be good to get on with it while I am relatively ok
Ok. I guess that is why. Although it is not time for me to start treatment yet, my MD does feel it will be sometime in the near future. I had a long talk with my specialist and I am pretty sure that I will go with with V&O as well. Wishing you the best.
Actually a lot of people say V&O is not too bad and I am one of them. I feel better than before I started treatment. But is easier than B+R for the most part. Blessings.
I started O+V last September at age 70 with WBC of 155, other than some fatigue the only problem I had was the high WBC. I could have put it off but felt it best to get through it when I actually was feeling well. I've had other treatments, 20 years ago, and so far this time is going very well with only a couple of minor hiccups along the way. On my first O infusion things were going fine, I went to the washroom, as you do a lot with all the liquid they are pumping in, when I returned I felt the room had had the heat turned down, way down, I was cold and shivering which was actually a reaction to the O infusion. Apparently this is fairly common and was soon brought under control by the nursing staff and in an hour or so we continued with no further problems, all remaining O infusions went without a hitch but that first day was a bit of a scare. I have to admit it was inspiring to watch as they pushed all the proper buttons and did all the correct things to get me back under control. The V pills were also a non issue on the low dose ramp up days but once I got to 400mg/day I was feeling some nausea, not real bad, just enough to feel miserable and grumpy. I tried a few drugs but nothing seemed to help, I moved taking them to the supper meal and spread the pills by taking 2 then about 1/2 hr later the next 2 with several glasses of water/juice. After about 10 days the nausea just went away, I still take them a bit staggered but no more stomach issues at all. All my counts have been in the normal range for several months and other than being more careful to avoid Covid, any bug for that matter, I'm feeling just fine. Wishing you the best with it.
our situations seem very similar with the WBC and age etc . I read your reply with great
interest as you are so positive and I want to try and be the same. Had a long chat with close family and we hope to just carry on as normal take each day as it comes and handle any problems as they happen.I overthink too much and this is negative so positivity is the thing
We are going into the better weather ( in the UK ) over the summer so less chances of Covid and colds/flu etc so the time is right for me.
As you say minor hiccups along the way are to be expected and our brilliant NHS nurses are there to help.
I have heard of nausea being a problem , but believe anti sickness medication is available.
Taking tablets with food is such a good idea and I will put that into practice once we get started.
Thank you again for your advice and I wish you good luck
Just be careful of any comments outside the UK where treatment and drugs may be different. The initial response by a haematologist is to watch and wait, with regular blood tests. First bear in mind that with CLL and eventually drug treatments your immune system will be low, so despite 3, 4 or even 5 covid vaccine shots you can still catch it. Just wear a mask when with crowds, shopping etc. Along the way. as I said you may get aneamia and if you do it is treatd by an infusion called Ritoximab with our without blood transfusions - just a day at the hospital, no problem and no discomfort. If after that your cell count is still below norm then they should put you on Calquence, teh brand name of Acalabrutinab which is a form of chemotherapy in tablet form twice a day. Although the accompanying leaflet gives a list of potential side effects I only suffered from a bit of bruising, a nose bleed or two and tummy upsets. All has settled down and as I said earlier I am now in remission after 5 months and my hospital visits down to every 3 months All in all, a doddle but of course your symptoms may be different so dont take my total word for it. The important thing is to have a good haematologist and my guy Dr Ari Chaidos at Hammersith is the very best. Definitely no need for private treatment
thank you for making some very good points such as the geographical considerations
and having a good haematologist which I have taken on board.
Am still wearing a mask when out and intend to carry on doing so.
i wish other people would ! I expect that there will be some bumps in the road with side effects, but will try to take each day as it comes and hope for a remission eventually
Hey Puppy,You've got this. I've been on imbruvica for over three years and just finished my fourth infusion of Obinutuzumab. I've had very few issues and have found that taking a long walk after the Obinutuzumab and staying really hydrated helps. Like others have said, the first week is the worst. They start the Obinutuzumab really slowly and closely watch for any problems.
From what I have seen and heard, this treatment is so much less debilitating than traditional chemo.
Good luck and please let us know how you are doing. Take care.
I started treatment last August. I had a reaction within the 1st 30 minutes of the Gazyva infusion but it resolved with the nurses quick treatment & no further reactions after that. I am currently on Venclexta daily. At 400mg I had watery diarrhea twice weekly then had a really bad month in January with abdominal bloating & severe gas pains. My oncologist lowered my dose to 300mg daily & I've been doing well since. Prayers for a successful treatment with few side effects for you!
Hi. I'm in the early stages of the O&V treatment. As usual with this community you have a lot of great responses which I really can't add to. What I did do was post about my experience in Hospital for the start of my treatment. We are all different, but you might find it informative to read my post. God bless.
starting treatment when well enough to cope with side effects but sick enough for treatment to be affective is a funny razor’s edge to walk - best of luck 🍀
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