Just starting Rituximab, nervous about side effects

Hi BunBambi and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.

I am Mike and I help out around our various Lymphoma groups. I don’t have Splenic Marginal Zone Lymphoma but I was diagnosed way back in 1999 at 43 with a different type of Low-grade non-Hodgkin lymphoma although my type is very rare eventually reaching Stage 4a in late 2013.

Living with an incurable but treatable NHL is a mindset but you will get into a rhythm….. so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Rituximab is a Targeted Therapy so will be less toxic compared than having main chemo regimes.

Will you have any Side effects ?...... the journey can be completely different for everyone. You can live e up 10 people with the same condition and on the same treatment and you will get 10 completely different journeys.  

I had Rituximab as part of my R-EPOCH back in late 2013 - early 2014. Over my 6 cycles I had over 750hrs of treatment and on the whole I had no real problems apart from the inevitable fatigue building up and I did lose my hair quickly but my treatment was very very aggressive…… your hair ‘may’ be affected but some don’t.

You may find this link helpful as you perp did your treatment Top Tips for the day of your Chemotherapy the link is taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

Let's look for you to have a smooth ride and for this to result in remission.

Always around to chat and talk.

I am out for a good part of the day but a few thoughts about treatment.

Hi BunBambi and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.

I am Mike and I help out around our various Lymphoma groups. I don’t have Splenic Marginal Zone Lymphoma but I was diagnosed way back in 1999 at 43 with a different type of Low-grade non-Hodgkin lymphoma although my type is very rare eventually reaching Stage 4a in late 2013.

Living with an incurable but treatable NHL is a mindset but you will get into a rhythm….. so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Rituximab is a Targeted Therapy so will be less toxic compared than having main chemo regimes.

Will you have any Side effects ?...... the journey can be completely different for everyone. You can live e up 10 people with the same condition and on the same treatment and you will get 10 completely different journeys.  

I had Rituximab as part of my R-EPOCH back in late 2013 - early 2014. Over my 6 cycles I had over 750hrs of treatment and on the whole I had no real problems apart from the inevitable fatigue building up and I did lose my hair quickly but my treatment was very very aggressive…… your hair ‘may’ be affected but some don’t.

You may find this link helpful as you perp did your treatment Top Tips for the day of your Chemotherapy the link is taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

Let's look for you to have a smooth ride and for this to result in remission.

Always around to chat and talk.

I am going out for most of the day so some thoughts about treatment.

Aim to drink 2 litres of water every day as this flushes the toxins from your body and protects your kidneys.

Eat a healthy balanced diet but as you may be open to infections, you no need to think a pregnancy diet.

Try to keep active as this helps reduce your fatigue.

Take all your meds exactly as you are told.

If you feel yucky don’t suffer in silence, talk with your hospital team as they have the tools to help.….. and don’t be stressing over side effects coming along - they may not ((hugs))

Thank you so much for your replies. The links in the first one are really helpful, I've been reading up on them. 

I will definitely try to drink extra water, and I'll look up a pregnancy diet, because I've never heard of that. The doctor told me to be careful with cooking and general hygiene, and not to eat anything undercooked or out of date, so I assume that's the gist of it, but I'll look into it.

Thanks again, I feel a bit more informed now

Hi again, sitting having a Coffee and just noticed your reply.

Generally it takes about 48 to 72 hours for your body to break down and/or get rid of most drugs. But the effects of the treatment  on your growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest and there is annual increased risk of Infection: risk and prevention…… then your body recovers in time for your next cycle….. but the more treatment you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

Part of the way treatment works is it kills fast growing cells and this also includes not only the cancer cells, but your white blood cells (neutrophils) that fight infections so a small food bug your normal immune system can fight could turn out to be more challenging so food safety is important.

Hi,

I’ve had 8 infusions of Rituximab alone and had no side effects, other than feeling tired on the day and day afterwards.
It really wasn’t too bad at all. Good luck!

Thank you so much . I've had 2 so far, and no ill effects apart from a slight temperature during the infusions. Good to know it might not get worse

Hi BunBambi, how did you get on with your Rituximab? I’m due to go for scan next week to see if my 8 treatments worked. The waiting is horrible, but I guess that’s what we all have to get used to

Hi, thanks for asking  It went really well, no severe effects at all. My skin got a bit dry and itchy, which may not even be related to the Rituximab, and my hair got a bit thin, but it was quite thin and fragile to start with, so it could have been much worse. I've got a CT scan booked at the the end of the month, but I already know my blood counts have been going up steadily, so fingers crossed I won't need any more treatments for a while. I hope yours goes well!

Rituximab is a bit different from chemo. It kills off the B white cells in the blood and they don't start to come back for about 9 months. The B cells fight infection so you will be a bit vulnerable to infections for a year or so. I'm doing maintenance ritux for 2 years, next one on Monday.