[mikeyParticipant]

Hi Bijou ,
Sorry to hear you have to join our group, but you will find lots of help on here, like Carole D suggests, there are people on here who have been there and got the-shirt so to speak.
i was diagnosed in 2003 , and despite a long and hard road with lots of treatment, i am still around and kicking 😉 so don,t despair, lots of help, and treatments,and hopefully a long life for you yet.keep your chin up.
Regards.
Mike. xx

[mikeyParticipant]

Hi,
Yes Dex does affect the voice , i have been on Dex for 5 years, and about 6 hours after i have taken them in my monthly cycle my voice becomes hoarse and husky, in my case it lasts for a few days, every month, i have not had any other problems with my throat / voicebox etc in that time.
Hope all go,es well for you .
Mike.

[mikeyParticipant]

Hi , Just a quick line, very sorry you are in such pain my friend .
In your case as it has gone on so long I have no answer, so this may be more helpful for others, in future, though the fact you say abdomen pain too makes me wonder.
I recently was in SO much pain that lasted almost 4 months, I was in fact screaming with pain when i got out of bed or moved in bed,I could not put socks and shoes on or walk, it was awful, i assumed it was bone pain with the Myeloma, but in fact it was a Bladder infection, believe me the pain was frightening, it was in the lower back and abdomen , finally it was diagnosed and a course of anti-biotics sorted it out in a further two week,s, So PLEASE anyone that gets such pain in that area, please suggest to your Team it could possibly be a bladder infection with all the drugs we take, you could not believe what pain it can cause.
Hope your pain is sorted soon
Regards to everyone.

[mikeyParticipant]

Hi Simon ,
Great you are in remission , I can identify with your emotions my friend, I,m afraid it is another side order of this disease we all have to cope with .
Fortunately i have someone close who comes around every day and i manage to get out for an hour os so, for a coffee etc, but like you i tend to keep everyone else at arm,s length ,including my close family, who tend to have their heads in the sand, I can understand that,it,s hard for them also, but it does,nt help the sufferer .
i have also had a couple of explosions in a hospital, i don,t think they fully understand the effects all the treatment and especially the Steriods have on us.
I find it very hard in places like supermarkets with too many people around, the treatment has shredded my nerves to bits.
But , i was diagnosed in 2003 been through nearly every drug there is, and a SCT , and still keeping the flag flying , despite all in 2015 and it,s amazing they have so many drugs for us these days, to keep us on our toes, it IS very hard at times, but i hope you feel better emotionally soon and your trip to the UK was well worth it.
if you ever want to chat, i can give you an e: mail address anytime.
Best Regards.
Mike

• This reply was modified 9 years, 6 months ago by  mikey.

[mikeyParticipant]

Hi , Sorry to hear you lost your father in 2014, and that Mam is also poorly .
Slightly different, but in the same vein, My father died of MM in 2008 , i was diagnosed in 2003, but never told him, but I have always been told MM is not hereditary, again my consultants were amazed when i told them dad died of MM , so there are things about this disease we don,t yet know i,m afraid .
Good luck to Mam, and wish you well too.
Kind Regards.
Mike. x

[mikeyParticipant]

Hi , Yes there are so many drug combo,s it,s hard to work out which ones cause mouth problem,s but they keep us chugging along also. Good luck to you too, all the best for a long and happy future.
Regards
Mike.

[mikeyParticipant]

Hi ,
I am on cycle 58 of Revlimid / Dex /Cyclophos , and have very loose teeth, have had 6 extractions in the last 12 months, not sure which of the drugs cause the problem, but nothing i do however clean and careful i am with my mouth, nothing seem,s to stop it , i am told it,s more the gums, the teeth are ok but receding gums make them loose. I have had an SCT in 2008 and stil going well, lots of side affect,s from the treatment, inlcuding loose teeth , but they seem to be insignificant if annoying, when i,m still responding to treatment at the moment .
So no your not alone with loose teeth , 😉 keep smiling.
Regards.
Mike.

[mikeyParticipant]

Hi,
Just an update on your recent bad news.
Myeloma is a very individual cancer, but can be treated well.
In my case i was diagnosed in March, 2003, and still on treatmnent .
I am on a drug Revlimid, and have been on it now for several years.
I have been on many treatments and had a Stem Cell Transplant,and may have another, you will become accustomed to all the terms, many of the treatments are hard work, but i have got through all of them, each one worked for a said time, and like i say it is a very individual cancer , some have better responses to treatment than others, its hard, but it can work, i have come through all so far, and survived 11 years , so please keep your heads up, and be as positive as possible, . 😉 .
If you need private chat or help , please e: mail me at : Mach1966@aol.com.
Kind Regards.
Mike. Phillips.

[mikeyParticipant]

Hi Sarah,
I am so so sorry to hear that ,and my late reply, I hope you are dealing as well as possible with your loss, and i feel for you very much.
take good care and once again sorry for my late reply.
Regards .
Mike. xx

[mikeyParticipant]

Hi Sarah , I have come in late to your enquiry, as i don,t come online too much, but hope all is going well .
I am on cycle 43 with Revlimid, and it is still working well .
I cannot give a direct reply as to the side effects of Revlimid as i take it with Dex and Cylophosphamide , but when i am on Revlimid only at certain times of the cycle , my side effects dont seem too bad, i tend to blame the Dex for most of them .
Hope things go well.
Hugs .
Mike. xx

[mikeyParticipant]

Hi Tina,
My abiding memory from my Stem Cell in 2008 was a yearning for ice cold things like the long ice sticks we had as kids and still available, try to find out if you have availability to a freezer, you may need to stock up on things like that from your visitors, also ice cubes are helpful if you have a few mouth ulcers,during and after treatment, lots and lots of people have had these same yearnings, so it seem,s fairly general.
Also be prepaired for huge swings in types of food you want to eat, on one day i would ask my friends to bring in something i fancied,(your family and friends must be patient with you ) the next day i did,nt want it, but you will probably be assigned a nutrionist to help you through all that .
Hope all goes well.
Hugs.
Mike. xx

[mikeyParticipant]

You Lucky people, (sleep wise ), how i envy you , i take Dex at 8am, and now Revlimid at about 7pm, half a sleeping tablet at 10pm, and STILL only have about 3/4 hours sleep, i am exhausted most days, and cannot find the recipe,for sleep, so wish i could sleep for 6/8 hours one day, but at least the Rev/Dex is working well for me, i must never forget that..
Hugs and best wishes to all.
Mike.

[mikeyParticipant]

Hi Debs,
Thanks for the info, on when to take Revlimid, i am desperate for a good nights sleep, i take the dex about 8am in the morning, but the revlimid i vary anytime afternoon or early evening, as i take a half a sleeping tablet at night, so i will stop the sleeping tablet ,and take the Revlimid about 9pm, anything is worth a try, to sleep well at night .
Hugs to everyone .
Mike x.

[mikeyParticipant]

Hi Colpot,
Thats, amazing news for all of us, thanks for sharing it with us.
I am on Revlimid, at the moment, 15mg for 21 days each month, and 40mgs of dex over 4 days, once a month, as a maintenance cycle.
I am about to start my 9th cycle, so a long way to go to catch you up ;-)but my paraprotiens are down from 22 to just 2 and stable, so I am coping ok with revlimid although i always have probs with the Dex, which had to be halved in dosage for me to sleep and function properly , but all in all coping ok.
Long may you continue Colpot,with your UK record, and i hope i get the chance to reach Cycle 38 too.
Take care, and regards to everyone on here,
Hugs
Mike

[mikeyParticipant]

Hi Roz,
Cannot think of words to help you, but feeling for you at this time , its an awful time for you,just hope you pull through, and think of the good times you had together, you were a rock for him during the last year or so, if only he knew of the times you were on here,trying to get the best for him,and asking questions, here and at the hospitals.
I hope you get down to Teignmouth, when you feel up to it, it would be an emotional day, but a day you may grow to think of fondly in the future .
Take good care Roz, hope you keep in touch, with us all, when you feel up to it, so we know you are doing ok.
Best Wishes.
Mike. x

[Author]

Posts