[Kazzam2Participant]

Dear Vicki,

I am so sorry to read about Colin’s passing.

Wishing you all the strength and love at this sad time.

Lots of love

Karen xxx

[Kazzam2Participant]

Hi robbojnn,

I like you have been having endless problems with my teeth and gums since my sct, though you sound to have worse, I know I am on my way, they get worse by the day. I too get a bit of esa, but be careful what box you tick, I ticked the box (it is very confusing), my dentist gave me a deep cllean and waivered (sp) the cost (approx £50, for check up and clean), this was back in February. A few weeks later, I got a fine of £100! plus the outstanding £50 for treatment!! This was very upsetting as I intended NO fraud. I went to the Citizens Advice and they appealed on my behalf, on the grounds that I found the form misleading etc. I won the appeal but had to pay the £50 for treatment. The lady at CAB said myeloma patients’s should get free or help with dentist care, but it seems we do not!! (Given that the treatment for myeloma ruins teeth and gums, Zometta does not help either!

I had a check up 2 weeks ago, as she sees me every 3 months, I told my dentist about the fine, and she said she did not realise either that there was 2 types of ESA! So be very careful about that box.

It is appalling that we do not get help with dental costs, it needs somehow highlighting. I will mention to my consultant on my next clinic.

Good luck with your teeth and battle, take care

Karen x

[Kazzam2Participant]

Hi Tony,
Sorry bit late replying, but just on a catch up. Reading your post really took me back to the shock of diagnosis of something I had never heard of, at first I thought skin cancer!!
Looking at the date you posted, things may have moved along, so I will finish.
Wishing your wife and your family the very best, at the worst of times. This site is very useful and friendly.

Take care
Kind regards
karen

[Kazzam2Participant]

Hi all,

Wow Dorothy, 11 years 😀! Good luck for the 25th. Are they your own stems? Have they been in storage? Hope I am not being too nosey, just that I have some in storage for my next SCT, at my next relapse. Best wishes.

Just off to pile some coconut oil on, I definitely think there is some sort of connection with the MM and nail.

Regards to all.

karen😺

[Kazzam2Participant]

Hi Andy,

Well jel!1

Enjoy your hols, and have a beer or 2 for me (hic)

Cheers

Karen 🙂

[Kazzam2Participant]

David,

Glad to be of help, I agree, it really does help discussing with other MM sufferers.

I often wonder that, was it because it was not as bad as first thought, or there was not enough benefit to be gained to make it worth it. I am putting it on my list of questions for my consultant, she will have had a report off him, I see her next Tuesday, after starting cycle 4 of Velcade :-/

Take care

Karen

[Kazzam2Participant]

ps, sorry David, I sent without checking spelling etc!

Karen

[Kazzam2Participant]

Hi David,

Thanks for your reply.

About my Vertbroplasty, it went well, though the surgeon/consultant, said it was a challenge! I admit to being very nervous, but I was knocked out, thankfully as lying on my tummy was very uncomfatable. I came round bout 3 hours later, they gave me lunch and painkillers, though I do not remember any pain. I had my own lovely room, actually would be nice to stay in, my husband brought me home about an hour after. I cannot believe I ate my lunch! I returned a week later(check up)and was treated to footage of the operation!! Hubby is a bit squeamish so diverted his eye! Amazing really, I would highly reccomend Rennie Winston, ( never quite sure if that name is other way round), I first met him when I was in hosptital, he does NHS and private. I also (as part of it)had 8 physio seesions at the private hospital, it was quite helpul, I have no regrets, I still have a bit of curviture, but my posture and pain is a lot better.

I forgot to mention, I was originally booked for 2 operations a month apart, because the can only do 2 or 3 vertabrae each time, however when I went for check up, he said I would not benefit from 2nd op. I wish I had asked more questions, like ‘why’ etc.

oh sorry, you said briefly! Got carried away, sometime feels like I am telling somebody else’s story. Hope this helps, i intend on getting on here more, as it is a lovely helpful and friendly site, most myeloma sites are American I find.

If you need anymore info, you are welcome anytime,

kind regards

Karen

[Kazzam2Participant]

Hi David,

Thanks for your best wishes, just re read my post, i was not very clear, it took 4 years to be diagnosed, which was nearly 3 years ago, I am on my first relapse after various treatmeats, Thalidomide, SCT, Vertbroplasty (for crushed vertabrae, I lost 3 inches in height), But they said I will always have pain, hence the Zomorph. Constipation, and bloated tummy is the norm (oh the joys.

I would try and get a 2nd opinion if I were you about back op (we had to go private to avoid waiting list), it has helped. Have you ever been given a brace? Very uncomfortable.

Best wishes and regards and good luck, keep us posted.

Karen

[Kazzam2Participant]

Hi Maureen and Ian,
I have not been on for a while, glad to hear Ian has had SCT at last.
Your description of him takes me back, he just has to rest and eat when he can, but not panic at weight, I sent most food away first 10 days( approx), it will come back. I had a ‘mysterious infection’ which cleared when they removed my Hickman line.

I was in isolation, 30 miles from home, it was a bad winter, so I would only let family visit every 2 or 3 nights, ( very rural roads).
I/we survived. Now it is just a distant memory, staff, room, ‘food’, cleaners etc brill, not hotel, but dread to think how much private would be.

Good luck Ian. Best wishes to you both.

Karen. 🐱

[Kazzam2Participant]

Hi Anna and David, sorry to but in, I have not been on much recently, I find this site friendly and useful, but my myeloma came out of the cupboard recently, first relapses after SCT, so a bit shocked as greedy me expected longer

I hope you are both doing as well as can be expected.

Just an observation, an awful lot of people end up diagnosed by locum/duty doctor. I was going to my own GP for approx 4 years, he kept upping painkillers, physio etc, he once referred to me as a ‘fit’50 year old! A few months later, in his abscence, I seen a dot doctor, in horrendous back pain, within a few minutes of seeing me, she ordered am emergency X-ray and urgent blood tests, long story short, she saved my life.

Sorry got carried away, best wishes

Karen. 😠🐱

[Kazzam2Participant]

Hi Janet and all,
I match your description too, I am on Zometta bone strengthner, and zomorph, I am also on cycle 3 of velcade ( my first relapse after SCT). My feet and hands are very dry too. Does anyone have vertical ridges on hand fingernails? Mine started on a couple of nails pre diagnosis.

Best wishes

karen 🐱

[Kazzam2Participant]

Hi Janet, ( and all),

I had SCT in January 2013, it has definitely affected my memory and concentration, I used to read a lot, now it’s a struggle. I may try that magazine with short stories. I suppose being on zomorph will not help, I have a lot of bone pain, because of late diagnosis, so it’s probably a mix of all of the above.

Good luck and best wishes

Karen 😺

[Kazzam2Participant]

Hi Joe
I am a bit late saying this, but glad to hear your tests went okay, fingers crossed for you.
I am treated at Leicester Royal also. I have had 3 bone marrow test, I had a local and gas and air, the fist two were not pleasant but bearable. The most recent test was horrendous, worse than giving birth! And when nurse said that she did not get a good sample and had to go in again, I cried, I felt daft after, as I carried on a bit, but it had to be done. Afterwards they said may be I am coming down with something and it made me more sensitive. I actually think it is more likely the operator. I hope so, the thought of having it again fills me with dread. Everybody is different.

Hi to all, and best wishes for your myeloma journey.

Karen
Xx😺

[Kazzam2Participant]

Hi Richard,
Hi Richard
So sorry to here this. I too am back on treatment, I have just started my second cycle of Velcade and Dex, I went on the MUK5 trials but got radomised the standard treatment. I know what you mean, peed off, I got 17 months complete remission after SCT, they said they don’t do SCT after first relapse, I have stem cells in storage, but not looking forward to the time I have to use them.

I hope I haven’t cheered you up too much. We just have to soilder on. Good luck with your treatment.

Karen

ps

Hi Jane and Rebecca.

[Author]

Posts