[clarkieParticipant]

Hi Rebecca,

Thank you for your comments. It’s great to hear a success story. As stated before I have found the inability to do much has been one of the most distressing side effects of the VTD. I am so looking forward to getting my life back. I have booked two holidays one in July next year (as can’t go abroad for 6 months) a year away!!! and another one not long after. As I an retired I spent a lot of time travelling and this has had to go on hold as well so frustrating but hey ho. I have also started a list of places in the UK I want to visit, although Scotland in February does not have the same ring as the Caribbean. Onwards and upwards and thanks again

Anne

[clarkieParticipant]

Hi Teresa

Let’s hope 5th September is a good day for both of us. Had my 3rd velcade injection yesterday so just waiting for side effects to kick in.

Physio is a good idea, never thought about that, will definitely bear that in mind. It’s a pity about camping this year especially with the beautiful weather. If your husband retires in October that gives him the Winter to get fit. I call my legs “jelly legs” as they wobble a lot.

When I went to see the Consultant about the SCT he said I was underweight which I am not but said you can lose up to 10% of your body weight so start going to MacDonalds. My nephew gets married in 2 weeks and I have a very posh expensive dress to get into so no chance of that. God help me in my high heels with my “jelly legs”

Anne

[clarkieParticipant]

Hi Teresa and Etta

It’s good to hear other people’s stories gives me hope for the future. I am halfway through cycle 5 and one more to go – should be completed by 5th September and then stem cell – decision time. I suppose my biggest fear is that I will never get my life back to what it was before. I was very active before my diagnosis- in fact I was Nordic walking the night before so no real symptoms which is why it came as such a shock. The stem cell co-ordinator assures me that I will but the thought of the life I am leading now becoming my future fills me with despair. I am not housebound but very weak and not able to do much at all. I get very down stuck in the house – I try to get out but have to drive every where cannot even walk to the shops which are just up the road. Just concentrating on getting chemo over and then take it from there – roll on 5th September

Anne

[clarkieParticipant]

Hi Teresa

Nice to hear from you – I am ok. Have just started cycle 5 of vtd my pp are down to 1.5 and had my first appointment about Sct last week. Fatigue and neuropathy is still a big issue for me. Went out to lunch yesterday and exhausted today can’t do anything. The Consultant was very enthusiastic about the sct and I begin tests mid September. If all goes according to plan the harvest will be October and then the transplant 4/6 weeks later. I am beyond scared at the thought of it but feel I have got to give it a try. I was told the average remission if you can use that word is 2 years which is a bit disappointing but this can go to 4 years with a maintenance programme – can’t remember the name of the drug but he called it the grandson of Thalidomide – he did say this was not the norm in the UK. I am just trying to concentrate on one thing at a time so get the 6 rounds of chemo over 5th September and then take it from there. I veer from being very positive to the depths of despair and feel at times that my future will be grim with continuous drugs and the consequent side effects which people appear to dismiss as I don’t look like I have cancer – someone said the other day.

Anyway enough of my moaning how is your husband?

Anne

[clarkieParticipant]

Hi all, hope you are ok. I have had a bad chest infection and chemo was suspended for a couple of weeks but back on track now. I am just about to complete round 4 and two more to go. My paraproteins are down to 1.8 which is great and I have an appointment on 22nd June about a stem cell transplant. I had a meeting with my Consultant on Monday and mentioned to her about the discussion on this forum about continuous treatment after a Stem cell. She agreed that there is now a trend towards a maintenance regime and maybe the SCT may not in the future be the gold standard treatment but at the moment it is. I cannot see the point of a SCT, with all that entails, if continuous drugs afterwards are part of the package. My hope is that the SCT will mean a period of time, as long as possible, without drugs as I find the side effects so debilitating. I have decided to carry on with the chemo for two more cycles and see what happens at the initial meeting on the 22nd. If continuous drug treatment is included this will definitely influence my decision.

Anne

[clarkieParticipant]

Hi Jenny,

Sorry to hear your Dad is so unwell.  I suffer from aches rather than pain if that makes any sense and yes it is worse in the night.  I was as fit as a fiddle before diagnosis- found in a routine blood test – but now feel everything is falling apart.  My hips, legs, arms and shoulders ache all the time which is very debilitating.  I am told by my oncology nurse that this is one of the recognised side effects and there is nothing they can do about it.  I also get very dizzy, feels like cotton wool in my head continually moving around which can last for days again recognised side effect.  I finish my 3rd round on Wednesday and start 4th on Thursday.  I am 66 and live alone so it’s very difficult to cope.  I now have to drive to the local supermarket although friends and family are really supportive.  My social life has dwindled to virtually nothing which is an added pressure.  I have got an appointment on 22nd June about a SCT.  My Consultant has also referred me to the team’s pyschologist to see if this helps

 

Anne

[clarkieParticipant]

Hi, thanks for your responses.  I have only just felt able to start researching myeloma as I think I have been in denial till now. Not sure the research is a good idea as beginning to agree that a little knowledge is dangerous but needs must.  My consultant told me that the SCT was my best hope of a drug free period of time but then I picked up from somewhere that others were still on chemo post SCT which made me think why bother with the SCT.  It’s early days yet as still waiting for my initial appointment about the SCT but will just have to wait and see what happens.

 

thanks again for your replies- interesting

 

Anne

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