good evening ( well it is in Wales)
I am about to start treatment on venetoclax and obinutuzumab . I am extremely nervous but having been given a choice of treatment with the help of my medical support I have chosen this road . Any information on your personal journey on this treatment would be helpful. Thankyou
You can read my posts. I have just finished cycle 1 and am starting the venetoclax ramp up this week.
Although my journey has not been straightforward, the team always deals with everything in a very reassuring way. I'm feeling better than 3 weeks ago and yes, I was admitted with a neutropenic sepsis which at the time sounded scary but I recovered quickly and 4 days later I was able to have another O infusion.
My numbers were very low when I started, which has caused a few bumps on the road but remember, we all react differently. Some people breeze through.
I think it is fair to say that it is likely you will experience a reaction to your first infusion and if you search on here, you will be able to see the range of reactions. I was mentally prepared for that and it helped.
The treatment itself is going smoothly and the scariest part was the unknown just before I started. When I'm at the chemo ward I feel absolutely safe.
All the best, you have got this. Just listen to your team and if you feel like something feels different to your usual yourself, make sure you speak to them straight away or call your haematology 24 hour helpline.
Petra ❤
Hi Hilo13,
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There are lots of personal stories you can read- just look for the box on this page labeled:
Related Posts
*Obinutuzumab and Venetoclax healthunlocked.com/cllsuppo...
*Obinutuzumab and Venetoclax healthunlocked.com/cllsuppo...
*Venetoclax or Venetoclax+Obinutuzumab healthunlocked.com/cllsuppo...
*Update on Obinutuzumab and Venetoclax healthunlocked.com/cllsuppo...
*Venetoclax without Obinutuzumab? healthunlocked.com/cllsuppo...
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And if you want more, you can use the search feature to look for
healthunlocked.com/cllsuppo...
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Len
Thankyou didn’t think of that 🤔
HiI was diagnosed stage 4 Nov 2020 , straight to Obinutuzumab and Ibrutinib, had no issues and was clear and in remission with 240 days
That is so encouraging Thankyou
Hi Hilo13,I also chose obinutuzumab and Venetoclax for my first treatment. Now on the home run with 8 weeks of 400 mg Venetoclax daily to go.
I think I’m one of the many who breezed through treatment.
Wishing you all the best, I feel better than I have in years.
Focus on the good times ahead and
Keep walking
Lilsa
Hello Hilo13,
I just had my last Obinutuzumab infusion yesterday. If you want to check out my profile, you can see a lot of my journey so far. The only issues I have had so far is with the first Obinutuzumab infusion where I had a reaction about 30 minutes into it. My ears started getting warm and it started to travel to the top of my head. I also started feeling a little nauseated. They stopped the infusion, gave me some Pepcid and a hydration IV and waited about 15 minutes. I had no issues after that.
As for the Venetoclax, I have had no issues other than the combination of the drugs has been working too well at times. My WBC and ANC have been too low at times where they have had to give me Neuprogen shots and cutting my dose or stopping of Venetoclax. I like taking my Venetoclax after dinner and it has worked well for me.
If you have any questions, feel free to ask. It is a good treatment and I would do it again if given the opportunity.
Thankyou it’s reassuring to hear positive feedback much appreciated
Hi, There are quite a few UK folk on here who have had the O&V combo since it was approved in Dec20 by NICE. I can only talk of my own experience which was that apart from day1 being a bit bumpy, I sailed through the rest & am now awaiting the results of my final CT scan (it has only taken 7 weeks!!). It is a great combo & I feel marvelous now, with all bloods in the normal range. Starting treatment is a positive step & there are many people on here who talk of feeling full of beans after a few doses of Obi, so good luck. Take plenty to read, as some of the days can be long.
Thankyou most appreciated
Hi Hilo13. I started on Obinutuzumab on July 6. I had an infusion reaction within 45 minutes but it was well managed by the team and I was able to finish the infusion and the second day on July 7. Since then I have been experiencing infection-like symptoms, fever, chills, sweats and headaches. All tests were negative and it now appears that my immune system was very reactive to the O treatment. All that has settled down and I have my next infusion on Wednesday, July 27th. Be very observant regarding what your body is telling you and communicate with your medical team. They have many options to deal with the many reactions that people experience. 😀
I was also given a choice - meds every day forever or a one year treatment program of Obinutuzumab + Venclexta. I also chose O+V. Completed my one year last March 1st (2022). You made a good choice of treatment. After one year, my tests came back 'no CLL cells detected'. I will have my 6 month followup appointment next month. Worst part of the treatment for me was sitting in an infusion chair with a needle in my arm for 5 hours one day each month for 6 months. I had zero side effects during my treatment. Be sure to drink plenty of liquids is my biggest caveat. One more thing, I lost ALL of my antibodies from my FOUR Moderna Covid shots. Four weeks after each Covid shot, I was tested for antibodies. The O+V wiped out my antibodies. A few weeks after I completed my treatment protocol, I had 2 Evusheld injections. I will have my blood tested next month to see what my antibody level is..... ALL the best to you on your new journey!
Thankyou it was quite a hard decision but Thankyou for highlighting the reasons I chose this particular regime I hope you continue to stay well
So grateful to this community, my husband will be getting his first infusion next week, got the 2 evusheld injections this week AND the flu shot finally appeared, so he got that one as well. ALL his vaccinations are now up to date and fingers crossed he will also be sliding through this. Yep, we are both nervous, getting a 5-hour infusion of anything unknown is disconcerting to say the least, but hopeful that our tomorrows will start looking healthier and brighter as we cross off each day. We are will be adhering to standard pandemic protocol, but hope to live our lives as normally as possible as we go through treatment. He should be on his maximum dosage by the beginning of October, so the next 6 weeks will be pedal to the metal, healthy eating, exercise as much as possible, plenty of hydration. Those are the only factors we can control. We will be masking indoors and in crowded areas (which we will avoid). Family members must be 48 hours symptom-free (AFTER crowd exposure) followed by a negative covid test before visiting. He is the patient, and I'm the enforcer, it's not fun but necessary. I will keep everyone updated on his progress! Once again thank you to all!
His basic numbers starting out:
Platelets - 147
Neutrophils - 6.98
Absolute Lymphocytes 256.69
Hemoglobin - 12.5
WBC - 267
Swollen spleen, and CT scan showed swollen lymph nodes through out, more so in the cervical/neck areas.
While this looks bad, so many people start treatment with more severe levels. We chose to start treatment before the CLL progressed any further.
Our seat belts are securely fastened and we have pulled on that yellow tab to be sure!
Again... better days ahead!
I am another enthusiastic fan of OV treatment. I breezed thru it finishing the year June 20th. Also showing no CLL in the blood. Did not have to alter my active lifestyle at all. Good choice. 🙏 all goes well for you.
Hi hilo13,I had 6 cycles (9 total infusions) of obinutuzumab. I did not have venetoclax. I had no issues with the obinutuzumab itself. Because the first 1000 mg dose is split into days 1 & 2, I chose to keep the IV needle in my arm overnight so I did not have to be restuck on day 2 with the IV needle. I did feel an uncomfortable burning sensation in my vein for about the first 90 minutes on day 2 of the infusion. The nurse said that it should subside after awhile and was due to me leaving the line in overnight. Be prepared for long days in the infusion chair. It took me 6-8 hours, with the pre-meds and fluids and the 30-60 min of post fluids. Good time to nap, read, watch movies, or chat with others if you are not in a private area. I always had my own room so I had to entertain myself being that no companions were allowed due to COVID.
You will do fine. Be assured that obinutuzumab is a very effective monoclonal antibody and easily tolerated.
Susan
Thankyou so grateful for your reply and your experience is very helpful stay well
Hi from NJ! I am doing same treatment . Any questions or need to vent - feel free to reach out ..
Thankyou that’s very kind will definitely keep you in mind
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