1st session - after one hour violent whole body shakes. Drip feed stopped and then fed in a lot slower, no more shakes. Then bendamustine.
2nd session four weeks later - after one hour felt faint, light headed then severe chest pains for 15 minutes. Rushed off to cardiology ward. Angina initially suspected but troponin in subsequent blood tests confirmed it was a heart attack. Hospitalised four days, heart scan clear thankfully. Now feel fine on blood thinners but platelet levels are very low. Have yet to find out what will happen for third session from haematologist on Monday.
I am 64, reasonably fit as I cycle and walk a lot, eat healthy food, no previous heart problems, non smoker. Follicular NHL.
Hi @Jsa. Gosh, what a few weeks you have had. You must be exhausted, both physically and mentally. I don’t have any experience of Rituximab. I too have follicular lymphoma but was treated with radiotherapy. I’m sure there are lots of people who will be able to share their experiences of similar treatments with you. How are you feeling in yourself? Have you got a good team around you?
Sorry to hear of extreme reaction to Rituximab and hard time after your last session.
I have non follicular diffuse lymphoma and took a different drug than you in chemo, but also with Rituximab for the first two sessions. Not as fit as you, but I ate healthy food, no other health issues and turned 59 during chemo, so slightly younger.
1st session One hour into drip-feed of Rituximab [R] I was very breathless. R stopped, extra anti-histamine taken, other drug administered and I had a blood transfusion the following Monday.
3 weeks later, 2nd session, 15 mins into administration of R I experienced nausea, blood pressure dropped, I was feverish, full team round me. R stopped. Other drug administered after a short delay.
I refused to take R again, the Consultant would have pushed for it with extra anti-histamine, but as far as I was concerned it was an allergic reaction and I had no wish to repeat it. The bad news is that chemo is less effective without R, but there is only so much a body can take!
Hope you’ll have peace about whatever decision you take and that the rest of your chemo sessions will be less dramatic and more effective.
Hi Nichola, I guess I may be switched to radiotherapy after this unless an alternative will be offered. Rituximab is very efficient as after the first session all of my lymph node tumours had disappeared after three weeks!
That’s very interesting as I guess we all have different reactions to different drugs. I was very surprised that I never felt sick throughout the whole chemo cycle and didn’t have any side effects at all apart from the two mentioned.
I am seeing the haematologist on October 9th for my usual pre-chemo check up, I cannot imagine being given rituximab again so will be interested to see what is advised.
I am very happy with all of the cancer and cardiac teams that have dealt with me, we are so fortunate to have the NHS and incredible medicines and technology in this country.
Hi @Jsa, yes, isn’t it interesting that we all react differently to treatments, it shows we are all wonderful, unique, special people.
Please let us know how you get on with your haematologist on 9 Oct. Take care.
I had Rituximab for CLL and had no side effects. I was 57 when I had it. I am also part of the genome project that will be able eventually to allow clinicians to determine the best treatment for a patients for effectiveness and reduced side effects. Until then it will still be best practise and reaction to any side effects unfortunately but at least the future is brighter.
Diagnosed with Follicular NHL in 2004, stage 3/4, aged 57. 6 x CHOP without Rituximab, told it wasn’t licensed by NICE at that time. Relapse 2012, given Zevalin which was only a partial success had 6 x Bendamustine and Rituximab in 2013 which put me back into remission. Always felt odd with the Rituximab infusion, my arm ached, my head was fuzzy and I felt cold. Was supposed to have it as maintenance therapy for the next 2 years but developed respiratory problems, pneumonitis, and eventually bronchiectasis and invasive haemophilus influenzea, it took almost a year to get right with antibiotics. Consultant said not to have Retux again but am still in remission and thankfully still living a good life in 2020. Retired now so taking responsibility for myself with Covid and being very careful. Stay Strong.
Hi @NikkiP, a great big welcome to our forum and thanks for your informative post, I hope you find our community forum helpful and supportive. I look forward to hearing more from you.
Hi Jsa, I was treated with Rhituximab for CLL and was warned by my consultant that some people due have a reaction to it and therefore my first dose would be spread over two days. True to form, I did suffer a reaction after an hour or so and the drip was stopped and subsequently resumed at a slower rate which seemed to work and the second day was a lot easier. The subsequent two treatments were ‘okay’ with some minor ‘unpleasantness’ but I managed to get through them without having to stop the drip. The last thing I wanted was to subject myself to even longer in the chair. I managed the following treatments without any problems and was very pleased to see the effectiveness of Rituximab in reducing my white blood cell count and allowing my haemoglobin to recover. As has already been mentioned, these drugs have different side effects on different people but the cancer teams are normally extremely good at massaging treatments as necessary. I did find that when I was in for treatment, I tried to get up and walk around the corridors every hour or so, pushing the drip along with me. This activity did seem to reduce the effects of the drugs or more likely just stopped me sitting there waiting for side effects and helped the time go quicker. It also ensured that I managed to get my ‘step count’ up on treatment days.
Welcome to the forum @NikkiP, thank you for sharing this. What a huge amount you had to go through, it’s so good to hear that you’re still in remission, wishing you all the best going forwards.
Hi @Jsa so sorry you’ve had a really tough time of it lately! How have you been doing over the last week? Really hope your appointment with the consultant goes well on the 9th. Do let us know how it goes if you feel up to it.
Hi Nikki, good to hear it’s in the past for you, long may it continue. I am on the same combination as you, were you on a clinical trial? I am so hopefully I can continue on a smaller dose or slower feed.
Chemo now stopped as haematologist wants to have my heart completely checked out by cardiologist. He said that Rituximab didn’t cause the heart attack it just highlighted an existing heart problem, too dangerous to continue. I will have scan and angiogram 19th October.
On the plus side the chemo so far has been very effective, there are no lymph node tumours left at all and blood test shows bone marrow readings are very encouraging. I will have a CT scan shortly that will show the efficiency so far.
I am very please with the progress so far.
