hiya. After 8 years on W&W I am now in need of treatment. Can anyone offer any tips on how best to get through this and how far I should go to avoid infection. I don’t want my life to go on total pause during the next 15 months
I would really appreciate having a couple of buddies who are or have the same experience so I can just check out anything mysterious. I promise not to be a nuisance
Martin
There wasn’t fireworks. Treat it as a challenge to be confronted anew each day. I was fine for a period of time & then my head went to a mush, it sort of crept up on me. There was no constant that’s for sure. I got terrible vertigo for a period of time, acid reflux etc etc. Deciding what was suitable to eat between neutropenia, daily treatment & type 2 was the biggest head ache.
Some time later, I felt like I had re-emerged from a dense fog and I felt fairly normal again.
Infections were a worry but I was isolated for long periods of time.
Good luck with it all.
Thank you so much.
hi there, it's natural to be anxious but try not to overthink it too much and just go with the flow.
We are all your buddies here and if you want to check out anything mysterious then thousands of eyes on the issue is probably better than a couple. Nothing is too trivial to post and ask about, we were all newbies at one time, that is the whole point of the group.
Good luck with your treatment.
Jackie
That’s very reassuring. Thank you
It will help the board help you if you can provide a little more information (via your board profile) on the symptoms, counts, treatment type etc.. This can be done reasonably while remaining anonymous. You can check my profile for one decent example.
Try not to fret. Treatment options these days are multiple, they are generally well tolerated, and they are reasonably effective.
Hiya. Made a start on the profile. Thanks for the advice
15 months is not a usual treatment duration for first line treatment that has IV's.
Doctor's have a habit of expressing 4 week cycles as "months".
Venetoclax + Obinutuzumab is 12x 4 week cycles, just about 11 months. There are some tests in first 2 months after treatment and then 3 monthly follow-ups for first year after treatment. Obinutuzumab is given by IV, 4 days in first 4 week cycle (day 1, 2 ,8 & 15), one day for next 5 cycles. The 4th week of first cycle and all of 2nd cycle is Venetoclax ramp-up, frequent visits for blood tests and consultations. From the 3rd cycle to the 6th the cycle is preceded by a blood test and consultation, then the first day there is an IV. After that for cycles 7-12 it's a blood test and consultation, if you are doing well they will make it every other month.
Venetoclax + Ibrutinib is 15x 4 week cycles, a year and 8 weeks. Tests and follow-up the same as V+O. The Venetoclax ramp up is during cycle 4 (weeks 13-16). There is usually no IV on this treatment it's tablet only. There may be IV of saline and Rasburicase if you are high risk TLS on weeks 13 and 14.
Both V+O and V+I reduce the 18-20% that are high risk TLS at start of treatment to about 2% at start of Venetoclax.
There are 3 other tablets that are given with these treatments. Allopurinol for TLS, Co-trimoxazole for pneumonia and Acyclovir for shingles. The Allopurinol should halt shortly after the end of Venetoclax ramp-up.
There are also other supportive medications for nausea, diarrhoea, headaches/pain.
I had V+O, other than a high temperature on the first IV I sailed though treatment. I was allowed back in the swimming pool at cycle 7.
Incredibly helpful. Thank you
Unlike cancers that treat with standard chemotherapeutic agents, a number of us have relatively few side effects. If you're tired, rest, but it's good to get out of bed daily & at least walk for exercise.
If you wear a decent respirator when in crowded situations, avoid infectious sick people, and keep good general hygiene, that's optimal. So wash your hands, try not to touch your face/mouth after touching public things like doorknobs & elevator buttons, turn your head away when hugging people instead of getting their breath in your face, etc.
I keep a set of gloves in my car I put on when filling up my car with gasoline; the pump handles are rarely cleaned. Things like that. See a doctor sooner rather than later if something "seems wrong", it's annoying when it isn't anything, but *if* it's something you may keep yourself out of the hospital.
Thank you for going to so much trouble. Very helpful indeed.
Hi Martin,
I’ll be following the replies to your post as I’m in the same boat—W&W 9 yrs and will be starting treatment too.
Cheers from Canada, Abby
Martin,
I have CLL. I was first diagnosed in 2019 and my first line of treatment was oral chemo (called Ibrutinib). That worked great until it stopped working in the Spring of this year. My body went into freefall and I ended up spending a month in hospital. Once the doctors had been able to stabilize my body , they turned their attention to getting the cancer under control starting with monthly IV infusions. I started infusions of Obinutuzumab in July and added oral Venetoclax a month later. I went into my first infusion session really nervous and stressed. I was really sick at the time and I didn’t think my body could handle the stress of the new treatment and all the side-effects that I had heard of. In fact, the exact opposite was true. The infusions were amazing. They righted the ship. Now I see each infusion session as a step to getting my life back to “normal “.
The infusion sessions are somewhat anticlimactic, to be honest. You go into a room , first they will give you some prep medicine to get your body ready (Tylenol, steroids, etc.) and the 30 minutes later they will hook up the treatment bag. You sit there for 4-5 hours while the medicine is fed into your blood and then you go home. The first session will take longer, subsequent sessions slightly shorter. Everybody is different, but for me the side-effects have been very minor. The first time I felt a little sick and very tired, both during and afterwards. I had my monthly session this week and now I am handling the treatment well; my immune system is back within normal range, my red and white blood cell counts look good and the side-effects don’t bother me. Just remember, you are going to be there for a long time. Bring snacks, food, a book, music, stuff to do. It’s boring d unnerving but ultimately it is the way you go from being a cancer patient to a person with a million qualities of which cancer is just one detail again.
Good luck
Thank you. Glad your outcome is so positive after a fairly rough ride
Hi hope you don't mind me asking, but I'm 8 years ibrutinib and failing the last 18 months, getting constant infections terrible skin lessons etc , lost weight, but I have no large b cells ie lymph nodes ect so they are keeping me on Ibrutinib and watching. My skin biopsies are all showing be cell and lymphocytic infiltration . Did any of this happen to you when you were failing ibrutinib.And good to hear your new treatment is working they have discussed possible V and R for me next .
I realized that the Ibrutinib was no longer effective when my spleen and liver expanded so much I could feel them and my uric acid levels went through the roof. The high uric acid led to kidney stones and a series of infections that landed me in the hospital five times in a month. I lost a lot of weight and was an all round mess. As soon as the doctors could get the infections under control they started me on the new treatment plan. I started getting better really quickly once the new treatment started
What’s your treatment plan?
3 cycles imbrutinib then 12 cycles ventoclax added.
When I took Ibrutinib (in daily pill form) it had almost no side effects for me. I am now on ventoclax (also in daily pill form) and the main side effect is that my skin is really itchy.
Really helpful. Thank you.
what type of IV treatment are you going on? I am taking Venclexta 400 mg a day and get Gazyva infusions every 28 days. The Venclexta I take for a year and the Gazyva, is six treatments.
There is always a concern for infection. Get your vaccination.
All vaccinated ta. I’m to be on ibrutinib for three cycles then venticlax is added for a further 12 cycles.
I tolerated the treatment well. I did not have many issues with infection, but I kept my distance if anyone showed signs of being sick. When I went to a store, I masked up.
Overall, I am happy with this course of treatment. I have one more infusion, and then I'll be back to watch and wait.
Thank you. Good to know that you have an end in sight. Thank you
Hi, I've not started treatment but just wanted to wish you well. From what I read from the knowledgeable people on here it varies so much between individuals how YOU react to treatment but mindset means a lot so go into it positively...like most things worthwhile it's going to be challenging but your posts , thoughts and feelings will always be welcome ....Gary
I think your comment about being positive is both helpful and spot on. Thank you
Good morning, Ukuleleboy1. I'm still in w&w. Just want to send my positive thoughts and prayers your way. And a warm hug too! You've gotten great responses from this terrific group of caring souls. You're not alone in this today or ever. We're all here to help however we can. I don't have treatment experience to share, but I have tons of well wishes and prayers. 🤗 Stay positive!
I really appreciate that. Stay well.
Hi. I've had Rituximab infusions twice. My first line treatment in 2019 was FCR and I had the Rituximab once a month for 6 months. My second line treatment started March 2023. I had the rituximab infusions again for 6 months and am on Venetoclax for 2 years. We have an excellent hospital and wonderful staff. I'm lucky as it's a 25 minute walk through a park to get there. I always loved the walk before having to sit all day. They monitor you very closely for side effects. I found that the high dose of antihistamines they gave me often meant that I often slept for quite a bit of the treatment session. I generally felt OK, just a bit tired. I took a book, newspaper and audio book to listen to. Initially, I would be given a lift home but enjoyed the walk latterly if the weather was OK.I was extremely anxious before starting both treatments but found that this reduced significantly as time went on. In my experience anxiety doesn't get you anywhere (and i do realise that its difficult to control). I do Pilates and have reflexology to help and walk with a group. For me fatigue is my main problem and I just rest. Also, I'm on Filgrastim injections as I have neutropenia which causes me pelvic and hip pain. I agree with others who have replied to you, take each day at a time, try and stay safe but also try and get out and enjoy yourself. Good luck to you. I'm happy to help if I can. X
I am really grateful for your reply. I wish you well with your own treatment. Keep enjoying the walk!
If you're not already on Aciclovir, I strongly recommend getting a prescription from your GP (don't take no for an answer) for a prophylactic dose against shingles. This should be 2 x 400 mg / day, to continue well past end of treatment. If you have Obinutuzumab or Rituximab you should continue for at least a year after.
Now may be a bit late in the day, but it's a good idea to get up to date with all vaccinations before starting treatment.
Thank you. Fortunately my consultant clearly agrees with you as he has prescribed aciclovir as part of the support drugs received today. Equally fortunately I had my flu and Covid boosters last Thursday and shingles not too long ago. Still all really helpful advice. Thank you
Try to drink water and Gatorade before, during and after the infusions. I was tired afterwards, but felt better if I went out for a long walk as soon as I got home. I had trouble sleeping for two nights following the infusions; probably from the steroids. Good luck, you got this buddy.
👍
Hi! You will do great with treatment. Take time to "be comfortable" literally.... pillow, blanket, good book - enjoy the benedryl naps. I believe eating well and resting well have value in protecting yourself even with a compromised immunity. Stay simple - maybe not huge crowds - refrain from alcohol during treatments - and make sure proteins are cooked - no raw fish. Worst part for me was not being able to eat grapefruits! They are a favorite of mine.
All the best.
That really helped make me feel better
The treatment starts 
Acalabrutinib treatment yes or no
Treatment
Third Vaccine Now Available for Cllers in Active Treatment in Ontario 
URGENT: Painful lymph node in the back of the head
