[susieParticipant]

Hi Dorothy

I shall be thinking of you that day and wishing you all the best. I’m sure all will be fine. The 17th is the day of my hospital appointment so I wont forget.

Best wishes

susie

[susieParticipant]

Hi Dorothy

Thank you so much for your good wishes.

How are things going for you at the moment ? Well I do hope.

Best wishes

susie

[susieParticipant]

Hi All

I’m coming to the end of my last cycle on the Myeloma X1 trial and have got to tell them if I am prepared to continue on maintenance. Has anyone any advice on the pro and cons of staying on Revlimid all be it on a lower dose. I can’t seem to find much info on continued use.

Hope you are all doing ok and coping with this mind bending disease.

Best wishes to all

susie

[susieParticipant]

Thanks Jeff. None of us know what the future holds and I don’t think any different about an SCT. Were you on any maintenance drugs these past eighteen months then.

I recently posted that the plasmacytoma on my spine had reduced significantly, which my consultant told me at my Christmas eve appoint. At my last appointment in Jan I asked for a printout of the MRI report. It states the tumour had reduced only marginally, so why the consultant told me what he did I don’t know, but I am both very disappointed and cross. I will discuss it at next appointment in Feb, but I wont be surprised if it will be down the radiotherapy route, coz I’m on my last cycle and I can’t see it can be left, its a large tumour tho its not causing any pain at the moment.

Best wishes to all

susie

[susieParticipant]

Mavis, Thanks for your reply. If I can do as well as you have I shall be happy. I have seen on Myeloma Beacon there are some doctors in the States that don’t agree with SCT and say in the future it won’t be used as standard treatment. We have to see if they are right.

Jeff, Thank you. It is indeed a great feeling. I remember when I started this treatment it hit me so hard I thought about stopping it coz I felt so ill. I had been given no information about side effects by the hospital and I felt so alone despite my family and friends support. It was this forum and the info nurses at M UK that helped me persevere, so I just try to let others on here starting on their journey that it can be done. Jeff may I ask where you did your SCT research ?

Best wishes to all

susie

[susieParticipant]

Hi All

I had the end of cycle 5 hospital appointment today and saw a very nice registrar. Paraproteins are 3 which I was a bit disappointed with I was just so hoping they’d be undetectable. Never mind treatment has done me well and I shouldn’t grumble at numbers.

I did bring up my concerns about the drug inconsistent’s and was told it did appear there had been mistakes. It was only the supporting drugs the myeloma drugs were always correct.

I asked what happens at the end of cycle 6, my last one. I shall be randomised onto either maintenance Revlamid or nothing. There was no mention of SCT, I suppose because of my age, I shall be 70 next month. I’m quite glad as I had already made my mind up I wouldn’t go down that road.

I can’t believe that I finally have the end of treatment in sight. It’s been a tough time. I live on my own so my off days have been hard to cope with but I’m there. I hope I stay there for as long as possible.

My best wishes to everyone

susie

[susieParticipant]

Andy

I am just so pleased to read that things appear to have finally turned well for you. I shall be watching with hope that all goes well for you. You deserve it. Certainly you have helped me in my early days of treatment for this MM journey and i’m sure that goes for others.

Best wishes

susie

[susieParticipant]

Hi Jeff,

I attend Wycombe General. I was monitored there for MGUS for a few years before it became active myeloma together with a plasmacytoma on my spine. At the beginning I felt confident in the care but as time has gone on things seem to be more and more slap dash, especially when it comes to drugs. I find some are omitted on one cycle then appear again on another with no explanation at all and despite my bloods being “fine”. Blood results are only given when I ask and then its only the paraprotein. Do these consultants assume patients are dim wits I wonder. I find it very exasperating.

Best wishes
susie

[susieParticipant]

Thanks Andy. I’ve always picked alcohol free mouthwashes. I shall bear in mind the salt water mouthwash. At the moment I’m using Cordosyl daily (dentist recommended) as it is for preventing gum problems. I have 2 weeks to go till my next hospital appointment when I will question them about the whole thing.

Jeff, Sounds like you were you not told anything either Am I right ?

Best wishes

susie

[susieParticipant]

Hi All

Happy and a healthy New Year to everyone.

I’ve read on here that when on Zometa it is important to keep up dental hygiene, and to use prescribed mouthwashes. My hospital has never mentioned anything about dental problems or preventions. They didn’t even advise me to get a dental check before starting the infusions, which I did off my own back.

My question is can someone tell me which mouthwash their hospital has advised or prescribed.? I have been using Colgate Plax but I don’t know if its good enough.

Also has anyone experienced tongue problems while on Revlimid. I get numbness down one side, which is horrible, together with loss of taste. I did tell consultant about it but all I got was “I’ve never
heard of that one”

Best wishes

susie

[susieParticipant]

Hi Dorothy}

Thanks for your good wishes. I shall be keeping my fingers crossed for your MRI and team appointment.

I wish you a healthy and happy new year too.

Keep Well

susie x

[susieParticipant]

Hi All

I had my hospital appointment on Christmas eve at the end of my 4 cycle. My PP’s are down to 4. I’m just so hoping they will be soon undetectable. A recent MRI shows the sacral plasmcytoma has reduced significantly. I’ve now started the 5th cycle and this time the consultant has stopped the cyclophosphamide so I ‘can enjoy Christmas, but it will be back on the next cycle. However, now it seems he’s put me back on fluconazole, septrin, and adcal. I find it strange how the drugs seem to chop and change, especially when they tell me all my bloods are fine.

I am feeling so much better in myself at the moment. The Revilimid doesn’t seem to bother me much, thank goodness and I am lucky I don’t have common problems with the Dex. It doesn’t keep me awake and all my other aches and pains go. But I do hit the floor when coming off it.

So to everyone starting their MM journey, go with it, the treatment is not good at the start but it does get better. At the end of the day, it does seem to work which makes it all worth it. At the start of mine I didn’t think I could do it, but it was worth sticking at it.

Best wishes

susie

[susieParticipant]

Hello

Thanks for advice. I wont take any then. I have taken Loperamide, the instant one, and it certainly does help quite quickly.

Best wishes

susie

[susieParticipant]

Hi

I’ve had two BMB and I’ve had gas and air each time. It made it quite doable and leaves your system as soon as you stop breathing it. With sedation you have to have someone with you to take you home and stay with you. My advice is ask for G AND A. There is no reason why any hospital should refuse that.

Good luck and try not to worry too much

susie

[susieParticipant]

Hi All

Recently I have been getting a lot of intestinal cramps. I’m wondering if the treatment has killed off all the good bacteria in the intestines. Does anyone know if its ok to take a good quality probiotic while on treatment?

I hope you are all doing well

Best wishes

susie

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