I am on Venetoclax plus rituximab treatment and have already had 3 of the 6 Rituximab doses. The 4th dose is due on January 3, but I am reluctant to visit hospital and remain there for so many hours coming into contact with several people of all sorts. I would prefer to wait until the Omicron wave calms down, even if this takes a few months and then resume Rituximab. In the meantime I might be able to get support through corticosteroids, e.g. prednisolone, as I have seen that this is possible according to the Irish NCCP protocol ("Consider coverage with steroids for those who are not already receiving steroids", page 5 of 9): hse.ie/eng/services/list/5/...
I would highly appreciate any such thoughts or, even better, experiences.
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RamsesII
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Hello and happy new year to you.I completely understand you asking this question and I am afraid I do not have the answer, as such.
My husband is at exactly the same point as you… he has his 4th Rituximab infusion due on the 13th January.
I am anxious every time he goes to the hospital, worrying that he will be in contact with covid ( we have shielded for almost two years now 😕 and it has been incredibly hard), but his view is that he wants to get the treatment done, and he trusts that the hospital is doing its utmost to keep everyone safe.
I am the worrier in the relationship! 😉
I hope the treatment is helping you and I am sure you will benefit enormously from it.
Try not to worry too much… leave that to the hospital staff. We can only do our best and then pray!
Good luck, I hope you relax once you have made your decision. I am sending you a hug.
Thank you very much Fran for your swift and affectionate response.I shall carefully weigh risks versus benefits with my specialists and then decide which course I shall take.
Good luck to your husband and a smooth and happy new year to both of you.
I think this respirator is great, except it doesn’t filter the wearer’s exhalation. Most places don’t permit that and if my nurse was wearing one I would not be happy at all…
Good point. They are used in covid wards where it does not matter. I guess it would look funny to put a surgical mask over it. But right now everybody is on his own and we have to protect ourselves first. Most people whom I see don't wear their masks properly. They don't care about getting infected.
Thank you very much JustAGuy for your response. I shall revert with a post after having thoroughly discussed the situation with my specialists. I wish you all the best!
Thank you very much LeoPa for your response. I shall revert with a post after having thoroughly discussed the situation with my specialists. I wish you all the best!Ramses II
Me too - last infusion in 2 weeks - the risks of the latest variant vs stopping my CLL treatment make this an easy decision for me, especially since I and all staff at the treatment centre are ultra cautious with hand washing, distance and K95 masks. I too just want to get this phase of the treatment over and allow the months to pass as some level of immunity recovers (until I stop Ventoclax in 18 months time).
Thank you very much Dawson21 for your response. I shall revert with a post after having thoroughly discussed the situation with my specialists. I wish you all the best!Ramses II
I'll be having my 5th obinutuzumab infusion this month (+ chlorambucil), so similar considerations to yours, except we have far fewer Covid-19 cases in NZ.
For me, I had to get on top of my CLL quickly, so it was an easy decision to continue with the obinutuzumab. For you, it will depend partly on the degree of urgency of CLL control.
Remember that the venetoclax and rituximab act synergistically, which means that the combined effect is greater than the sum of the individual effects. You don't know how much efficacy you will lose by stopping the rituximab, but it could be quite a lot.
I was on venetoclax monotherapy (clinical trial) for over 2 years and never got more than a partial remission. My CLL eventually started to progress very rapidly and I had to go onto the O+C, which was the only treatment left for me here. If I had had rituximab as well, I might have been luckier (though I'll never know).
I assume you realise that corticosteroids also suppress the immune system, as well as having quite a large number of other potential undesirable effects: cllsociety.org/2017/05/ster...
Also, the rituximab continues to squelch your antibody-producing ability for some months after your last infusion. So all in all, you should discuss this carefully with your haematologist/CLL specialist before reaching a decision, as you may not gain as much as you think. If you continue with rituximab, make sure you wear an FFP2 or N95 mask throughout the procedure and it should be pretty low-risk. Good luck!
Thank you very much guzzifan. You have pointed to some very relevant issues, which helps me a lot in placing the situation in its full perspective. I shall discuss tomorrow with my specialists to make sure I make a fully informed decision.Good luck with your treatment and all the best for the new year!
Ramsesll, I had the same decision to make a few months ago, and after discussing with my consultant, chose to stop rituximab. Although the decision was influenced by my poor reaction to the venetoclax ramp-up, the main consideration was that rituximab wipes out the probable efficacy of the covid vaccines, but if you've already had 3 infusions, that is already (unfortunately) a given. Another factor I considered , and am still thinking about, is that many people seem to do well on monotherapy venetoclax, but that the main trails which produced wonderfully good results, included either rituximab or obinutuzumab.
Sorry I'm not much help, the best advice as guzzifan said is to talk it through with your consultant. whatever you decide I wish you good health.
Thank you very much RogerPinner for your response. I shall revert with a post after having thoroughly discussed the situation with my specialists. I wish you all the best!Ramses II
I was in very similar situation in December, when was my sixth Rituximab treatment booked. I am normally not anxious, but the fear of COVID was overwhelming and after discussion with my doctor we decided not to have the last dose. I also did have issues after infusions like chills, diarrhea, feeling exhausted more than usual and so on.
She felt that it will not make much difference in my treatment working well as the working horse is Venetoclax, which I am on for one more year. My CT scan has been the best in 3 years.
I would suggest for you to discuss it with your doctor. Dr. Furman wrote an article about this subject not too long ago. Maybe, someone in out group has it and can possibly post it for you. As for me it helped me to stop worrying about what if’s.
Thank you very much Dana for your interesting and encouraging response. I have read Dr. Furman's article and find his argumentation quite convincing. I shall revert with a post after having thoroughly discussed the situation with my specialists. I wish you all the best!Ramses II
I face a decision a little more perplexing than yours, since you will be able to wear an N95 respirator mask to protect yourself unlike me. I am facing a followup procedure to correct a Mohs surgery on my face from September. I will not be able to wear a mask. I will check with my CLL specialist this week for his recommendation. I am 4 months post obinutuzumab treatment so have no B cells to fight omicron. My question will include whether they have any treatment available should I contract COVID. If that answer is "no", then my choice will have to be postpone, unless the dermatologist in my cancer center has strong opinions to contradict my thinking. It's not easy to deliberate every decision, no matter how insignificant it may be.
Thank you very much tesoro5858 for your response. I shall revert with a post after having thoroughly discussed the situation with my specialists. I wish you all the best!Ramses II
Thank you very much nthegroove for your encouraging response. I shall revert with a post after having thoroughly discussed the situation with my specialists. I wish you all the best!Ramses II
Hi everyone. Further to my post "Anyone thinking to postpone rituximab doses until Omicron wave is over?" I wish to report that my specialist hematologists agreed that it would do no real harm if I postponed my 4-weekly Rituximab infusions until the Covid-19 pandemic calms down a bit and visiting the hospital becomes safer. I shall then have my three remaining infusions.In the meantime I continue taking my daily 400 mg Venetoclax dose and feel well.
Well, it's not like you will have zero treatment since you will still be on venetoclax. I chose monotherapy a year ago January for my CLL because of Covid. So venetoclax monotherapy is known to be used, especially if you are del 17p/TP53 mutated.
I don't think you would need steroids, they are used ONLY for management of infusion reactions in the protocol you listed. That "consider steroids for those not already on steroids" statement is referring to management of a Second infusion reaction, if steroids weren't used in managing any first, initial one.
And I wonder if your area is considering getting subcutaneous rituximab at all, then you wouldn't be in clinic for hours with an infusion.
Statement of steroid recommendation only for infusion reaction
Thank you Sofia for your response and useful information. Unfortunately subcutaneous Rituximab for CLL, i.e. the 1600 ml version, is not available here. I explored that possibility and found that only the 1400 ml version, i.e the one for Non-Hodgkin Lymphoma is in use.
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