[TerryMGParticipant]

As I am one or two months behind Dai and others I would like to compare notes.

My consultant decided to start me off slowly so I only had one infusion of Bendamustine on a Tuesday and days 1 ? 4 with Perdnone and Thalidomide for the 28 days of the cycle. Within 15 minutes of the infusion my back really hurt and I told the nurse who said she had spoken to the consultant and everything was OK but I would need blood tests at least once a week or more. I was not too bad until the weekend when my back really hurt so I spoke to the hospital and they gave me a special appointment to see my consultant. I had a blood test and they arranged a CT scan on the Thursday. On Friday morning I a telephone call to say I need to come into hospital and to have a stent fitted to my right kidney. I had the procedure on the Saturday but my platelets were very low so I had one bag before the operation and another when in recovery. I had some blood and discharged late on Monday. The next week I felt quite weak and gradually got stronger. The Radio Therapy on my leg improved the discomfort and the diameter reduced but the upper leg showed signs of 2 more Plasmacytomas.

However, over month before starting Bendamustine I had around 50 small Plasmacytomas appear around my ankle there were red and very sore. Before the 28 days were up they had changed to hard lumps and some of the big ones on my back did the same thing. In recent days the ones on my back have formed a scab which has now fallen off. My consultant said that she had seen this before but called in all the other doctors to see my ankle and back and I gave permission for these areas to be photographed. I had a follow up RT appointment at St Thomas?s and I showed the consultant there who then got the big boss to see me and again they took photos. They seem to be very perplexed of my condition. They have agreed to give me RT on my foot but to wait and see what Bendamustine does to my back.

Cycle 2 was 2 weeks ago infusion on Tuesday and Wednesday this time everything seems to go OK but platelets are very low at 18 and my Nut dropped to 0.9. So I have had the 2 blood tests per week but I am border line each time, so have not had any more blood or platelets.

So my questions are have you had any of the things I have experienced above?
1 My feet are very spongy
2 I have ringing in the ears.
3 After about a week after the infusion I get intermittent short burst of ?electric shocks? in my right big toe mainly in the evening.

Sorry this is so long.

Terry MG ? failure is not an option?

[DaiCroParticipant]

Hi Terry,

The conditions caused by your Plasmacytomas sounds interesting but nothing I have ever heard of before on here. I think they are doing the right thing by keeping your treatment going while they try to sort out the other problems with RT and the like… because it doesn't sound as if those problems are being caused by the Bendamustine perse, although the chemo will bring your blood levels down. They did so with Keith to the point where he could not continue and now he is on CDT with continuing blood levels problems.

I was neutropenic for a week and only had 1 infusion during Cycle 2 because I was in hospital with a high temperature when I was due for my second infusion. I had my first infusion of Cycle 3 last Tuesday and I am due foe Cycle 2 this coming Tuesday, bloods permuting but with my HGB at 10.1 Platelets at 101 and Nuetrofils at 1.49 I suppose it's only my Neuts to worry about… but they say I can go ahead as long as my Neuts are 1.0 or more… we will have to wait and see. If it is borderline I will ask them to go ahead because then I will have 20 days to recover before Cycle 4.

I am told that NICE rules are a check up on PP's/Light Chains after 3 Cycles and as long as there is evidence that the Bendamustine is having a downward effect then treatment can carry on… if not?

I am frustrated by my FreeLite tests taking so much time to come back… only one reading since I started in January yet I have had 3 tests… fortunately the first test showed a drop from 2,400 to 880, so I remain hopeful for the other tests.

I feel quite good in myself excepting for the spongy feet, raging PN and Tinnitus like chapel bells but none of those delights are new and they don't seem to have got any worse.

Keep in touch, Scotty is 1 month or so ahead of me, perhaps he might pop in with an update too.

I do hope they sort out your Plasmacytomas to the degree where your treatment can carry on without interference.

Regards 🙂

Dai.

[TerryMGParticipant]

Hi Dai,

On Friday my Platelets were 18 and my Neutrophils were 1.2 (from 0.9 on Tuesday) My Hb was 8 but this has never been better that 12. I see my Consultant on Tuesday so we will have to see what the next steps are.

Regards?.. Terry MG 🙂

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