[jellytotParticipant]

Oh Susan! What a terrible shock. I have heard of plasma cell leukaemia but never meningitis. It is hard enough to lose a partner with this horrible disease but a child is almost unthinkable. I Can only say I am so sorry for your loss. I’m sure the pain is as great now as when it happened Jane x

• This reply was modified 6 years, 11 months ago by  jellytot.

[jellytotParticipant]

Hi Pam, I had 5 cycles of VCD with no response so my consultant is applying for pomalidomide as I have had 2 previous treatments of lenalidomide and velcade. No word of transplant as nothing seems to work. What’s involved with V- DTPACE? Your consultant is going to keep you busy for the rest of 2017! Given haw much drugs we’ve had Pam, do you think we glow in the dark?? Look after yourself, Jane x

[jellytotParticipant]

Hi Pam, I don’t know if I have P53 gene deletion but despite having both velcade and lenalidomide, since September 2015, my light chains and paraproteins are stubbornly high (1000 & 38) . My consultant never mentioned fish, cytogenics or deletions. I asked him about it but he said he didn’t think it was necessarily important!? His response now is to apply to the cancer fund in Northern Ireland for pomalidamide. Has VTD pace worked for you and what has it brought it down to?

[jellytotParticipant]

Hi chevgr. I took cyclophosphamide and prednisolone with the revlimid and the same with Velcade. Good luck with your treatment est wishes, Jane

[jellytotParticipant]

Hi, I was treated with revlimid as a first line of treatment. My consultant applied to the cancer fund here in Northern Ireland as I had peripheral neuropathy as a myeloma symptom. I was on it for a year but didn’t get remission. I am now starting cycle 5 of velcade and unfortunately that doesn’t seem to be working either. I think regarding  side affects there hasn’t been much it. Only thing is that you have to attend weekly for sub cut whereas revlimid tablets means up four weekly. I take velcade 4 weeks on one off while revlimid was 3 weeks on 1 off. Hope this helps, Jane

 

[jellytotParticipant]

It’s a very small world Graham, I’m in Castlewellan! Did she have her sct in 10 north? How is she now?

jane

[jellytotParticipant]

Hi Stevie, no, no SCT as I have never had remission 😐. I have been on continuous treatment since August 2015 and 6 months treatment in ’14. I see Michael Quinn. Where are you in NI?

take care

Jane

[jellytotParticipant]

Hi Stevie and Graham? I attend Bridgewater and the care has been excellent. I smouldered for a while and have been on treatment for a long time! I have never got to remission so after lenalidomide cyclo and dex I am now on  velcade, cyclo and Prednisolone. Who is your consultant?

 

[jellytotParticipant]

hi Ian, 

no sct yet, I have  very stubborn pps and light chains! My pps were 34 in sept and 28 last test. As soon as I get a run at treatment I need to stop with yet another hospital admission. My igg, iga and igm are all depressed and my neutrophils can be stupidly low. However, my bones are great! Myeloma is clearly a very individual disease.

best wishes

Jane

 

[jellytotParticipant]

Hi Ted and Jean, I am on treatment –  rev, cyclo and steroids – but it has been interrupted so often with severe infections that I am getting Iv ig (intravenous immunoglobulin ) every three weeks. It is ridiculously expensive – over 1000 blood donations produce enough plasma to produce a tiny bottle of ig. The first thing I noticed was my energy levels were improving but they wear off as you get closer to the next Iv. You should feel much better very soon!    Jane

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