finally

[skytortoise]

after 12 years on w&w I am about to begin a course of Rituxamab. I would appreciate any advice etc from othe members of our community who have experienced the same therapy.

Happy Christmas everyone.

[Paint-arty]

I received Rituximab treatment twice. Once in 2016 and again in 2020. In each case this was for AIHA which required 4 weekly infusions, together with prednisolone, which l was slowly weaned off over a 3 month period.On each occasion l found the Rituximab infusions (which were done slowly over a 4 hour period) to be well tolerated. Also l can't say l had any side effects from the Rituximab treatment, only from the Prednisolone, as l was on very high doses.

Once again since having the treatnent l've been back on W&W and long may l continue to do so.

I hope you too have a successful outcome from your forthcoming treatment and are soon back on W&W too.

Meanwhile, a happy Christmas to you and a healthy New Year. God bless.

[skytortoise in reply to Paint-arty]

thank you

[Name-1]

I received R+Leukeran 2016/17,2020/21 and now I begin again Rituximab iv (8h),for 7 days R sc. My Dg. Marginal zone lymphoma. Last R iv was ok.

[skytortoise in reply to Name-1]

Thank you

[trenaleigh]

drink a lot of water, it helps a lot, it really does. Bring snacks to keep up your blood sugar level Many infusion centers have snacks available

If for some reason you have a reaction feeling faint or nausea, tell the nurse and he/she will stop the infusion, most likely you can start the infusion again within an hour. To start the infusion slow and gradually move up to a higher flow of medicine is the best way to have a successful infusion. I’m very optimistic with Rituximab. It’s been a life saver for me. But I did have a bad reaction the first time and afterwards I never had a bad reaction again.

[skytortoise in reply to trenaleigh]

Thank you

[Mijoed]

My first Rituximab infusion was done slowly and the only brief reaction was an itchy scalp. That took quite a few hours. Subsequent infusions were done using high rate - takes only about one and a half hours. I had no reactions during those five infusions and no side effects during the six cycles.

[skytortoise in reply to Mijoed]

Thank you

[GRMat158]

The first encounter with Rituximab will be the worst - so if that goes OK then you can be optimistic about subsequent visits.

My own experience (in 2013) was that despite starting slowly I did have a reaction and, in the end, they decided to stop for the day. I returned the following day and they took it very slowly and had me sit on a bed "just in case"😉- however that did not cause me any problems. Subsequently a low rate was used which meant several hours sitting in a chair, but I did not experience any issues on cycles 2 through 6.

From what I was told, whilst it is usual for the first dose to be more 'noticeable' a strong reaction like I had does not happen often.

Hope all goes well with your treatment

[skytortoise in reply to GRMat158]

Thank you

[Agiledog]

……and Merry Christmas to you, too. There is not much in your profile about your genetic markers. So , maybe I am behind the curve on what you have already learned here. Since this is your first treatment and you have been on the forum a while I presume you have been told of the importance of a second opinion from an expert in CLL. There are several excellent non chemo options for first line treatment, depending on your individual factors. Good luck moving forward.

[lankisterguy Volunteer]

Hi skytortoise,

I agree with Agiledog , using rituximab/Rituxan alone is not common or usual therapy for CLL, it is far more often used as a booster for other more effective (longer lasting) targeted treatments. ( rituximab is also called Mabthera. Or a biosimilar such as Truxima, Ruxience or Rixathon). These are sometimes used alone for other NHLs or autoimmune conditions like AIHA or ITP.

I had it as my first therapy, but from an inexperienced, part time doctor, and it did reduce my ALC / Lymph# quickly, but my CLL came back quickly.

After that, I consulted with 2 different CLL experts and they both agreed that more modern targeted treatments would likely result in a longer remission.

If you have not seen a CLL expert consultant, it may be useful to request that referral now.

If a CLL expert has recommended that treatment, there may be extenuating factors that we are not aware of.

Len

[Agiledog in reply to lankisterguy]

Great, more detailed, informative reply, Len. Hope you are well.

Bud

[skytortoise in reply to lankisterguy]

Thanks Len, I’m just going on what my consultant has said in a letter to my cardiologist consultant. My Hb levels keep dropping through the floor, needing 2 transfusions every week. This is causing angina attacks which is why I am lying on a hospital bed for the last 8 days. Merry Christmas.

[lankisterguy Volunteer]

Hi skytortoise,

So it appears they are treating you for AIHA

my.clevelandclinic.org/heal...

frontiersin.org/journals/im...

and not necessarily for CLL, although you will likely see a dramatic drop in ALC / Lymph#

Len

[skytortoise in reply to lankisterguy]

Good morning Len

No one has ever mentioned AIHA so I will ask my consultant next week. Cheers. Freddie.

[skytortoise in reply to lankisterguy]

Some extra info Len. I am being treated for monoclonal B cell lymphocitosis, (as far as I know).

[Skyshark in reply to skytortoise]

I think it's fairly safe to say that Len is correct.

nice.org.uk/advice/esuom39/...

Rituximab is recommended (UK NICE for NHS 2009) for first line use treating CLL when used with Fludarabine and Cyclophosphamide. It was also recommended (2011) with Bendamustine for those where Fludarabine was inappropriate. These are both chemoimmunotherapy FCR/BR and are not widely used in UK NHS since the introduction of novel drugs.

There isn't any recommendation for Rituximab monotherapy for CLL.

Unless you have severe co-morbidities (not AIHA) that preclude the use of all the novel targeted drugs, BCL2i drug Venetoclax or the cBTKi drugs Ibrutinib, Acalabrutinib or Zanubrutinib, the usual NHS first line treatments for CLL are:

1: 12 cycles Venetoclax + Obinutuzumab (a 2nd generation monoclonal antibody) (2020).

2: 15 cycles Venetoclax + Ibrutinib (2023).

If you have 17p/TP53 aberrations (unlikely with 12 year W&W) or are unsuitable for chemo FCR/BR (many NHS doctors consider that everyone is).

3: Acalabrutinib (2021).

4: Zanubrutinib (2023).

Venetoclax + Rituximab (2019) is used for relapsed CLL. Acalabrutinib or Zanubrutinib can also be used for relapsed CLL or intolerance to the other cBTKi if not refractory.

Venetoclax mono is considered an "end of life" treatment.

Kidney conditions are the main reason to not use Venetoclax. Heart conditions for cBTKi. Liver conditions may prevent use of both.

Chemotherapy Chlorambucil (2015) with Obinutuzumab may occasionality be used for first treatment for those that are unsuitable for any of the above and Obinutuzumab would be used in preference to Rituximab.

[skytortoise in reply to Skyshark]

Wow. Happy Christmas.

[Skyshark in reply to skytortoise]

If it really is for "monoclonal B cell lymphocytosis", you need to make sure it doesn't count as a first treatment of CLL. That would prevent you ever having number 1 or 2 in the above list as those are only available for untreated CLL on current approvals for NHS use.

Happy Christmas

[yewjay]

Hiya Skytortoise. I live in Bury, near Manchester. I was diagnosed with CLL in November 2012. I was on W&W until September 2015. I was on the FLAIR Trial at The Christie, Manchester from Sept 2015 to Sept 2021. I was on Rituximab once a month for the first 6 months, and on 420mg Ibrutinib daily for the 6 years. I had no noticeable side-effects from Retuximab, but lots from the Ibrutinib. I am now in remission but, because I'm technically MRD positive, I have been told my CLL will come back within 10 years from 2021. I go back for bloods to the Christie every 6 months for the rest of my life. As somebody else has written, I've never heard of Rituximab being given on its own for CLL. Best Wishes, Joe.

[skytortoise in reply to yewjay]

Thanks Joe. Happy Christmas

[Jacksc06]

Hi. I have had 2 lots of of Rituxin in 2017 and this year. As stated by others, lots of water is key to flush your system out. When I had my first infusion I broke out in a sweat and felt quite unwell. The nurse stopped the infusion and restarted after a short time. After that all went well. So water rest is the way forward in my opinion. Best wishes.