Rituxan Maintenance for 12 months : Every 2mos I... - CLL Support

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Rituxan Maintenance for 12 months

Family2017 profile image
12 Replies

Every 2mos I have trmt. After 2weeks I get sick, I have 3 infusion left and using up sick leave. Asked Oncologist for off work order he denied to do so. He's Onc have the medical right to deny me an off work order until I finish the 3 infusions.

I am so upset and I have missed a lot of work to recuperate.

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Family2017
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migirlusa profile image
migirlusa

I’m so sorry you have to go through this. I have no advice but lots of empathy.

AussieNeil profile image
AussieNeilPartnerAdministrator

Given there are more effective treatments than Rituxan on its own and you aren't getting the support you need from your oncologist, it sounds like you would be wise to seek a second opinion from a CLL specialist. If you share where you live in a post viewable only by this community, others are likely to share helpful specialists near to you.

Neil

Family2017 profile image
Family2017 in reply toAussieNeil

Than you your input. I was dz January 2016. In shocked and mourning the lost of my mother in the same month.was W&W for 9months with Inc wbc and enlarged spleen. Onc firmly stated time for chemo . After great discussion with me, my husband and son I went with BR due to age 65yo and some other issues.

This oncologist was a 2nd opinion doctor. Previous Onc stated FR was best. However, chemo was hard but I worked and endured. Now with the Rixtuain maintenance I've been down with various infections, rashes, some leg and back pain.

Long story, I am a teacher I just need the time off to make thru the school year.

As I am writing I heard my student tell her friend she she hit her flu shot...I'm not healthy myself and exposed to my students sicknesses.

So, I will fight with my HMO administration to get the off work order for the remainder of the maintenance treatments.

I read your replies fromy other post. I thank you for your forth right medical and professional insight.

Thanks,

Patti

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toFamily2017

Thanks for supplying more background, but I don't see why you are having Rituxan/Rituximab/Mabthera maintenance after presumably completing BR treatment. All CLL treatments tend to suppress your immune system and Rituxan in particular has a reputation for suppressing the production of neutrophils - our first line of defence against infections. The standard treatment protocol with BR is just 6 treatments over 6 months - and no maintenance therapy afterwards.

When you are mixing with students on a daily basis, you need your immune system to be in the best possible shape. Studies have been done on whether Rituxan maintenance provides any benefit with one looking specifically at CLL patients summarised here:

healio.com/hematology-oncol...

I would say that CLL specialists would in general agree with the statement 'Greil and colleagues acknowledged patient selection may have limited the findings and that these results may not be as applicable for elderly or frail patient populations.' as expanded in the editorial comments by Constantine Tam: 'The benefit of maintenance treatment for CLL may vary from patient to patient, Constantine S. Tam, MD, MBBS, consultant hematologist at the Peter MacCallum Cancer Centre at University of Melbourne in Australia, wrote in an accompanying editorial.

“Some patients who carry a mutated IGHV gene and who are MRD negative after fludarabine, cyclophosphamide, and rituximab might be functionally cured of their leukaemia, and thus have no disease to treat,” Tam wrote. “... For the remaining patients, the clinician must weigh up the costs and risks of 2 years of antibody maintenance, for a gain in time to next treatment of 1 year or less, and no discernable benefit in OS. In the era before the kinase inhibitors, this gain might have been worthwhile, particularly for older or infirm patients with few options for salvage therapy.

Whether this benefit is still relevant today depends on the clinician’s access to novel drugs, and whether the safety of these agents hold up with longer-term follow-up,” Tam wrote.'

I've underlined the section particularly relevant to you, more so if you live in the USA. Of particular relevance to you is this finding: 'Grade 3 to grade 4 neutropenia occurred in 28 (21%) patients in the rituximab group and 14 (11%) in the observation group. Infections of all grades were more frequent in the rituximab group (66% vs. 50%).' So based on this limited trial, neutropenia was 50% more common in those on maintenance therapy and critically infections 32% were more common - NOT what you want when you are exposing yourself on a daily basis to a population segment more likely to have infections...

Neil

SueVG profile image
SueVG

Your doctor sounds like a jerk. Wishing you only the best in your journey.

Time for a new dr. Wishing the care you deserve. Best of luck and healing.-bill

RuthBorch profile image
RuthBorch

Agree with the other posts - rituxan maintenance is not something cll experts would recommend anymore- i switched after 1 year with my first oncologist to a hematologist- much better - but i still go to a cll specialist every few years.

AdrianUK profile image
AdrianUK in reply toRuthBorch

Hiya. In the uk GPs (family doctors) can give you sick notes. Not sure if that is also the case in the USA.

Family2017 profile image
Family2017 in reply toAdrianUK

Hello,

That's exactly what I did today. Left a message for GP, for off work order. Because she has treated me for some ofun sickness after treatment.

Thank you I've read post for almost 2yrs and everyone is awesome and kind and helpful and informative.

I am so ever grateful.

God is good and he answers my prayers.

Thank you,

Patti

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Are you in the US? If so FMLA should apply to your case, but your contract may also have a sick leave policy that would help. My district gave us 90 half pay sick days and FMLA protected my job. It was my doctor, not my HMO who had to sign me out for more than 5 consecutive days of illness, and then back in.

I do agree with Neil, though, about questioning rituxan maintenance. I had to really push when I had an HMO to be referred out of network, but there were only general oncologists, not even hematologists, in my network. Feel free to PM me if I can help with this. I don't go into much personal detail if posts are unlocked. You can lock yours by clicking on the v, then edit and scroll to the bottom of your post to change the default setting of everyone to community.

BLP1211 profile image
BLP1211

Wow!! Wonder why you can't get a work excuse. I would be looking for another doctor.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toBLP1211

This post is from 3 years ago. Often if you just continue down from a post you are reading you will end up with an old one. I was processing one tonight, then realized that the question and responses were from seven years ago.

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