Hello everyone,
I am diagnosed with Monoclonal gammopathy of unknown significance (MGUS) and with the rare Anti-MAG IgM Kappa Peripheral Neuropathy.
Both my Neurologist and Haemotologist want me to start Rituximab treatment asap. I’m wondering if anyone else has had this treatment (one day per week for 4 or 6 weeks of Rituximab immunotherapy infusion) for Peripheral Neuropathy. If so, I would be very interested to hear how you’ve got on with it.
Thanks for listening and hopefully sharing your experience.
Edwina
4 Likes
Hi @Ubbums12 thanks for your update.
I hope others will share their experiences with you…
Don’t forget if you would like to talk to the Blood Cancer UK nurses they are there for you on 0808 2080 888.
I have to say I think it is always difficult as everyone might react differently to the same medications.
Perhaps always keep your medical team informed of any symptoms you might have/get.
Please do keep posting how you are doing
Be very kind to and look after yourself
2 Likes
Hello. @Ubbums12 I had Retuximab treatment back in 2016 as part of FCR treatment for Chronic lymphocytic leukaemia (CLL) ( chronic Lymphocytic leukemia) The Retuximab was the easiest part of the treatment to be honest. A shortish day on a drip with little side effects. It was very effective for me.
Today I heard my latest blood test was not great and part of my next treatment will be Retuximab, after a month of Venetoclax. I am feeling quite positive about that treatment and hopefully it will be really effective for you. Good luck!
3 Likes
Thank you @Erica and @Spimula for your kind responses. Very encouraged to hear that your treatment was successful @Spimula. Please let us know how your further treatment goes, and I will also let you all know how my treatment goes. Let’s hope it continues to work positively for us.
Kind regards
Edwina
4 Likes
I have had Rotiximab … as part of CHOP . For me it was no big deal. Had a nurse sit with me first time. No reactions except I got the sneezes for about 15 mins. They slowed it down and I was ok.
I have slight neuropathy in my fingers and toes but don’t know what caused it. I don’t have the fine motor skills in my hand but I am now in remission. All good.
Having a stem cell transplant this week - hopefully curative.
Take care . Wishing you the best of health
2 Likes
Hi there @stunned. Reassured to hear that Rituximab was no big deal for you and glad you are now in remission. Good luck with the stem cell transplant and I sincerely hope it is curative for you. Can I be personal and ask how old you are? I am 67.
Best wishes for your forthcoming treatment.
Edwina
2 Likes
Hi.
I have just turned 63. Not a spring chicken 
Liz
2 Likes
Best of luck with your stem cell this week.
I’m sure it will all go well x
4 Likes
Hi had rituximab as an infusion as part of Rchop for my Non-Hodgkin lymphoma (NHL) Lymphoma in 2018. I had 9 rounds of chemo followed by two years of maintenance of just rituximbab.
It wasn’t given by an infusion during maintenance just an injection each lasted about ten minutes as it was given very slowly into my tummy. I was always given paracetamol and antihistamines.
I had some bruising and tiredness achy joints but the side effects were manageable. My bloods were checked regularly as it can make you more susceptible to infection.
For me I am eight years on and feel well having experienced very bulky disease so I am very thank for the drug.
Hope all goes well
2 Likes
So pleased to hear you had a good experience with Rituximab @Jules. Sounds like I have nothing to worry about so feeling strong. Seeing my Haemotologist tomorrow to agree treatment dates so will report back afterwards. Appreciate everyone sharing their experience with me.
Thanks Edwina
3 Likes
Well… an update on my story. I had an appointment with my Haemotologist earlier this week and was astounded to discover that he had retired at end of year and so was greeted by his replacement. Instead of agreeing a treatment plan for Rituximab as I expected, she said that because I have latent TB (have had it since birth as my mother had TB when pregnant with me) I have to be referred to the Infectious Diseases Clinic for treatment to cure it before I can have Rituximab. Apparently Latent TB treatment is 3-6 months long. To add to my disappointment my next appointment with her will be in 5 months time (they were every 3 months with previous Haemotologist).
To say I am devastated is an under-statement.
So looks like it will be a very long time before I get Rituximab treatment.
All the best to everyone and thanks for reading.
3 Likes
Oh @Ubbums12 I have certainly had consultants come and go and it often feels I go back to the beginning again and it throws me as it was not what I was expecting.
As you say devastated is an understatement.
Please do let us know how the Latent TB treatment goes.
Do you think the 5 mth gap before seeing the Haematologist again is because of the Latent TB treatment?
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do keep posting how you are doing.
Be very kind to yourself and really look after yourself.
2 Likes
Dear @Ubbums12,
Sorry to hear that your Rituximab has been delayed. It is completely understandable that you are devasted and we are all here to help and support you.
The doctors are ensuring that you remain as well as possible when you receive Rituximab which is why they have delayed starting your Rituximab. Treatments such as Rituximab can reactivate latent TB as it affects your immune system. It is therefore important that this is treated before you start treatment, to ensure it does not develop into active TB.
Please look after yourself and keep us posted.
Take care
Fiona (support services nurse)
2 Likes
Thankyou @Erica and @Fiona_BloodCancerUK for your supportive words. I just feel it’s a shame that curing the Latent TB only got mentioned at this late stage when it was known I had it all along. Anyway, I am pulling my big girl pants up and being patient in the hope that my anti-MAG neuropathy doesn’t get worse while I’m waiting. I’ll keep you posted how I get on. Right now I’m waiting for an appointment letter with the Infectious Diseases clinic.
Thanks again
3 Likes