[DorothyParticipant]

Hi Susie

Hope you get a good response from the secretary and yes they should give you copies of all the letters.

You have had a fantastic response all ready 63 – 8 in two cycles. I am on Cycle 8 and still have the Septarin and all the other raft of drugs. I started with 4 cycles but then went to 6 then 8 my Proteins came down slowly from 49 to 9 and I am waiting to see the latest results on Monday 8th. They only give 8 cycles so I am looking at a Stem cell transplant starting 5th January. The side effects are difficult at times, especially the neuropathy in my feet, and the tiredness/exhaustion. However I have good days when I feel I can just get on with things but when I have to rest I just have to rest no two ways about it.

Keep smiling and being positive Susie, I find a smile helps svn on bad days

Bless you
Dorothy

[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

[andygParticipant]

Hi Susie.

Since your on Revilimid it could be a side effect of the drug. I used to get intestinal cramps quite regularly at the end of cycles when I was on Revlimid. I also had cramps in my legs and hands.

I wouldn’t advise using a probiotic though it does really depends on your neutrophil level. When I was diagnosed the advice I was given was to eat like a pregnant woman ie no live foods, shellfish, live yogurts, raw eggs etc etc probiotics were on that list. I’d discuss it with your specialist nurse before going ahead.

Every day is a gift.

Andy xx

[avantrompParticipant]

Hallo Susie
I have been taking Revlimid for almost 5 years and the persistent side effect has been diarrhoea and intestinal cramps. My solution (at the suggestion of the consultant) is to take Loperamide when necessary. For me (in the Netherlands) it is available over the counter. It works like magic.
Annette

[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 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

[DorothyParticipant]

Brilliant news Susie Praying that your PP’s continue to drop. Hope you enjoyed Christmas. So glad you feel able to go forward again.

I finished cycle 8 and am now on course for a stem cell transplant, seeing the team on 2nd January, although I have an MRI on 31st December because of lesions on my upper spine.
Still the treatment is working I am hoping for remission status after the transplant somewhere about March I guess

Keep smiling Susie and heres hoping for a very healthy, happy and joyous new year for you xx

Dorothy xx

[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

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

[martinebbageParticipant]

Hi Susie

I had my 01st infusion of Zometa in December prior to this my specialist sent me to the hospital dentist for a check up, as a result I had a tooth plus two wisdom teeth removed. It was explained to me that one side affect of Zometa is that it affects the gums, they will not heal if you are on Zometa. The only other side effect, is that I had flu like symptoms for 48 hours after the infusion. Although a small price to pay in the greater scheme of things.

Good luck

Kind Regards

Martin

[andygParticipant]

Hi Susie.

It’s important you let your dentist know your on Zometa the next time you visit. Tooth extractions would only be done as a last resort and hopefully after a minimum of three month break from Zometa. The problem occurs due to exposed bone and has to be avoided as it can lead to osteonacrosis of the jaw. Which is another little problem I have.

As to mouthwash my dental surgeon told me not to use over the counter mouthwashs as most contain alcohol, which is a no no in the mouth regularly, and just to use salt water instead. He told me to add half a teaspoon of ordinary salt into a glass of warm water and to hold it in my mouth, not swish or gargle, for two minutes four times a day. I guess twice a day would suffice if you aren’t having any problems.

Every day is a gift.

Andy xx

[jeff605Participant]

Hi, all. Well, that’s interesting ! Would have been nice to have been advised about these dental problems and a visit to the dentist prior to starting Zometa many months ago. Still fingers crossed no evident dental problems so far , however 3 months is a long while to have a toothache. Good tip about the mouthwash versus salt though, Andy. Jeff

[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

[jeff605Participant]

Susie, yes that’s correct, no mention of dental care etc. at all. Susie sorry if you have mentioned it already, which hospital do you attend? I go to the Leicester Royal, where I experienced a similar lack of information after an emergency operation resulting in a ileostomy pouch. I woke up with it and was more or less left to adjust to it, and get on with it. Which I have. I have had help with problems since I should say to be fair.
best wishes to all, Jeff

[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

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