<p style=”text-align: center;”>AHi Richard, I live on the Isle of Wight so I have weekly visits over here and then go to Southampton to see the specalist, so far I have seen him twice and due to go again next Tueaday. The island consultant said it could be 5-6 cycles but the chap in Southampton has indicated that it will be more, at least 7. I…[Read more]

<p style=”text-align: right;”>Hi Richard, glad your doing well. I am slightly ahead of you on treatment, cycle 5 just started on VTD.</p>
At 47 years old it was/is a complete shock to the system and can be very confusing to fully understand, I reached the conclusion that you have no real choice but to get on with it- I am off to a support group in…[Read more]

Hi Jane, when I saw my specalist in Dec 16 he discussed this drug and told me that this could be a game changer. I am 4 cycles down the VTD route and no trials were available but would have seriously considered this. Adrian.

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

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…[Read more]

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…[Read more]

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…[Read more]

Hi Andy,

Well jel!1

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

Cheers

Karen 🙂

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…[Read more]

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

Karen

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]

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 🐱

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…[Read more]

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…[Read more]

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…[Read more]

Hi Matt

I’ve been going to the Marsden sutton for the past 3 years and seen by Martin Kaiser. Prior to that prof Gareth Morgan. I live in Hampshire and its a real pain if a journey to get to. but wouldn’t change hospitals. Yes it is extremely busy. But I’ve found them to be at the forefront of care and expertise.  Apparently they have a very…[Read more]