[susieParticipant]

Hi all

I’m hoping for some advise. I started cycle 3 of ird, just over a week ago and have had the most awful week since taking the ixazomib. It’s never particularly agreed with me but the last dose really did make me feel ill, no temp tho. It has caused vomiting++++ diarrhoea++++, total loss or appetite and the worst fatigue I’ve ever felt. I have felt very, very unwell, i can’t even bring myself to drink the amount I’m meant to. I now feeling like refusing any more ixazomib.

The Revlimid doesn’t seem to affect me much nor the lowered dose of Dex

I just wondered if there is anyone who may have experienced similar side effects, and how they’ve coped. At the moment I feel like giving up treatment.

Best wishes to all.

susie

[whisper2003Participant]

Hi Susie

I had similar problems on fourth cycle of IRd but wasn’t sure which one caused it. That was early November and I’ve had nothing since as I felt the need for a break to recover. I’m not sure if this combination has been effective or not but have an appointment next week to discuss my options. Decisions on treatment can be very hard when the treatment affects everyday life so much. Have you reported these things or been given any suggestions from your ‘team’? I wish you the best and hope you find the best solution. A different regime might suit you better. We are all different in our responses.

J

[susieParticipant]

Hi J

Thank you so much for replying.

I have to confess the week after the one I posted about I didn’t take the ixazomib. I was only just beginning to feel bit better and couldn’t risk feeling so bad again. I’m sure the consultant won’t be too pleased but it’s my body and there is quality of life.

I will take the 3rd one of the cycle and see if the same happens. I hope not. It’s 2 weeks till my next clinic appt. I didn’t contact the unit because I had no temperature so it wasn’t infection. They would have wanted to see me and I’m fearful of getting an infection in hospital.

I found it interesting J that you had no problems with your next dose of ixazomib.

Again thanks for your reply and I wish you all the best in your treatment.

susie

[janwParticipant]

Hi Susie

I’m really sorry you have felt so awful during your first few cycles of Ird treatment. It’s certainly not pleasant when you’re suffering with various side effects especially nausea which can seriously affect your eating, drinking and sleeping causing you to feel unwell, make your fatigue worse and makes you wonder whether you can tolerate further cycles. I experienced similar on my first line of treatment with 4 cycles of Cdt. You should ask if you can be monitored more frequently during your next few cycles to review your bloods, your myeloma levels and side effects to see whether you might need any changes in dosing or additional drugs to tackle the nausea and diarrhoea. It’s worth trying to find the right anti nausea drug which works for you on this particular chemotherapy, but unfortunately this is going to be trial and error. But there’s a large choice of anti nausea drugs which your consultant can recommend you trying.

I’m currently on my 10th cycle of Ird which has successfully managed to reduce my light chain levels from 3000 in May to around 50 in December which is terrific news. I do tend to suffer with bad nausea from chemotherapy and during my first couple of cycles of Ird the Ixazomib caused nausea and some vomiting for around 4 days each week, but following frequent discussions with my myeloma nurse and the palliative care doctor, a change of anti nausea medication was prescribed which has worked wonders with the nausea. But the anti nausea drug does cause me quite bad constipation despite laxatives, stool softeners and plenty of fruit/fibre/fluids. Fatigue became more of an issue for me during the 5th cycle probably not helped by 2 sleepless nights per week from the 40mg of Dex. I was breathless when climbing stairs and had no energy to move around much around the house. Blood tests showed a reduction in my platelet and neutrophil levels so my consultant lowered the dose of Revlimid from 25mg to 15mg and weekly steroids from 40mg to 20mg which certainly helped reduce the fatigue and helped with the inability to sleep from the Dex. The myeloma levels continued to decrease on the reduced dose and my blood results improved.

I thought I was managing well with the reduced dosing of the drugs until blood results at clinic last week showed my platelet levels had fallen again to 62 at the end of the cycle together with a low neutrophil level of 0.6. I am taking weekly Gcsf injections during this cycle to help boost the neutrophil levels, but apparently low platelets is more difficult to treat long term. I’m back to 2 week monitoring to see whether I need to take some time off the treatment to help my bloods recover and possibly the doses will be reduced again.

Before you think about stopping treatment, please talk to your team about how you are feeling and whether they can help you treat your side effects. I hope you manage to get some relief from the nausea, diarrhoea and fatigue. Do you know whether the first couple of cycles have reduced your myeloma levels?

Janice

[susieParticipant]

Hi Jan

Thank you for your input. You say you’re on your 10 cycle, how many cycles was it before they reduced dosage ? Did they reduce only to correct side effects.?
It has reduced my paraproteins from mid 40 s to 17 a month ago. I seem to get no ill effects from Revlimid. I was on the myeloma X1 trial and the Revlimid worked really well taking Pop’s to undetectable from 64.
I’m feeling ok now and will take the ixazomib (3rd week) on Wednesday.
I wish you all the very best in your treatment Jan.

susie

[janwParticipant]

Hi Susie

It’s good to read Ird is reducing your paraproteins so well only after a few cycles and long may this continue. It’s such a relief when you see the treatment is working, although coping with the side effects can be difficult especially in the first few months of each new treatment.

In the middle of cycle 5 my blood tests showed my neutrophils and platelets were low and when combined with my increased side effects of more fatigue, breathlessness, dizziness and spending majority of day just resting then my consultant decided to stop the Revlimid for the 3rd week of cycle 5 and then from cycle 6 onwards to reduce the dose of both Revlimid and Dex. Gcfs injections were prescribed during cycle 6 to help improve neutrophils, but apparently increasing platelet levels is much more difficult because platelet transfusions only increase the levels for a short period. It was hoped that the reduction in Revlimid would help improve my platelets, which seemed to work for cycles 6, 7 and 8, but the platelets and neutrophils decreased again at the end of cycle 9.

I thought I was coping OK with the reduced dose of Revlimid and Dex in terms of reduced side effects, but obviously the toxicity of the chemo is proving a bit too much for my body to manage which is such a shame as my light chains are continuing to decrease. I’m hoping a further reduction in Revlimid to 10mg will help my bloods recover and keep my myeloma levels under control, especially as maintenance treatment with Revlimid and Dex is usually 10mg of Revlimid.

Many thanks for your good wishes. I hope at your next clinic appointment you manage to fully discuss the side effects which you are experiencing with Ird and that possible solutions can be found.

Jan

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