Waldenstroms - Rituximab - my darling dad.

[lisalisa]

I started a thread back in 2004 when my dad was diagnosed with Waldenstroms - a rare blood cancer. For the past 4 years he has been treated by a very mild form of chemo taken by tablet and whcih thankfully caused very few side effects.

Now he has been told that this mild chemo is no longer working and that he must have rituximab, a form of antibody therapy which is quite tough and can have many side effects, some of which are fatal. As my dad is not in the best of health ( he has a pacemaker to start with ) I am very worried as is he.

Hasd anyone had a relative who has had rituximb - not necessarily for blood cancer but for anything else and can share their experiences? Good or bad it doesn't matter - just looking for some base line really.

Thanks all.

Bumping for you. Best wishes to your dad.

Thank you puzzlerocks. I think this is a rare disease and a new threapy too so maybe no-one here has any experince .

Bumping again for you. I'm so sorry, lisalisa.

Thank you elibean. I don't think anyone here has any experience of this. Thankfully.

Sorry to hear about your dad. Have you visited the cancerbackup website? It has all sots of helpful info and a forum.

thanks thingone - I'll look there.

hi, I will try to help you where I can as I work in haematology and administer Rituximab on a regular basis. Cancer bacup is an excellent website, but I am here if you need me xx

Hi Lisa Lisa I have given Rituximab (Mabthera) often in the course of my job.

I don't think I have ever given it to anyone with a pacemaker and usually cardiac status is taken into account before giving it.I haven't worked for a while but iirc a check is usually done on the heart before admin ETC.Your best bet would be to book an appt with your dads consultant to discuss the issues.

Rituximab has been trialled widely with blood cancers and has had a great success rate with the non hodgkins lymphomas.

Usually the drug is premedicated by giving paracetomol,hydrocortisone and piriton to try to negate any potential adverse anyphylaxis half an hour before administration.Also prior to first administration the persons baseline bloods (Full blood count and biochemistry) will be checked.Additionally often the person is "Hydrated" (Given IV fluids) and record of their fluid balance is kept prior to and during giving the drug.The rituximab comes as an infusion (Ususally in a litre of saline) and is treated the same as chemptherapy in terms of the way it is px on a separate card to other drugsand double checked by 2 nurses.It is a monoclonal antibody so targets the dodgy cells slightly differently,in a more specific way than chemo would.Close monitoring of observations (Every 15 mins) especially of blood pressure and temperature is undertaken and there is a strict protocol of how to titrate the drug during administration dependent upon the persons tolerance to it.

Hope that makes sense!!!

If you look at cancerbackup and specifically go to "Monoclonal antibodies" or "Rituximab/mabthera" hopefully this will give some useful information

HTH XXXX

wrinklytum and tiggly - thank you very muich. Are side effects common? One concern forus is that this drug affects the immune system meaning that dad would be vulnerable to infection and coulnd't stay with us to recuperate ( we have 5 young hcildren some of whom always seem to be ill with coughs and colds on rotation basis!).

Please could you give me a heads up on side effect likelihood and severity?