Kazzam2 replied to the topic Colin in the forum General 9 years, 2 months ago
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
Kazzam2 replied to the topic dental care in the forum General 9 years, 5 months ago
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]
Kazzam2 replied to the topic Is this really happening? in the forum Newcomers 9 years, 5 months ago
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]
Kazzam2 replied to the topic Dry and Brittle Fingernails in the forum General 9 years, 5 months ago
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]
Kazzam2 replied to the topic Pom cycle 18 in the forum Treatment 9 years, 5 months ago
Hi Andy,
Well jel!1
Enjoy your hols, and have a beer or 2 for me (hic)
Cheers
Karen 🙂
Kazzam2 replied to the topic Bloated stomach in the forum Treatment 9 years, 5 months ago
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]
Kazzam2 replied to the topic Bloated stomach in the forum Treatment 9 years, 5 months ago
ps, sorry David, I sent without checking spelling etc!
Karen
Kazzam2 replied to the topic Bloated stomach in the forum Treatment 9 years, 5 months ago
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]
Kazzam2 replied to the topic Bloated stomach in the forum Treatment 9 years, 5 months ago
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]
Kazzam2 replied to the topic SCT in the forum Treatment 9 years, 5 months ago
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]
Kazzam2 replied to the topic Bloated stomach in the forum Treatment 9 years, 5 months ago
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]
Kazzam2 replied to the topic Dry and Brittle Fingernails in the forum General 9 years, 5 months ago
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 🐱
Kazzam2 replied to the topic Memory Lose in the forum General 9 years, 5 months ago
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]
Kazzam2 replied to the topic Bone marrow biopsy in the forum Smouldering myeloma / MGUS 9 years, 5 months ago
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]
Kazzam2 replied to the topic Good while it lasted. in the forum Treatment 9 years, 6 months ago
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]
Kazzam2 replied to the topic Date for SCT in the forum General 9 years, 7 months ago
Hi Maureen,
Good luck to Ian.
best wishes
Karen
xx
Kazzam2 replied to the topic It's back! 17 months after SCT in the forum General 9 years, 7 months ago
ps,
Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂
Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.
Keep smiling xx
Karen
Kazzam2 replied to the topic It's back! 17 months after SCT in the forum General 9 years, 7 months ago
Hi all, thought I best check in. thanks for all your best wishes. The last few weeks have been hectic, backwards and forward to LRI and general, MRI, bone marrow biopsy (IT REALLY HURT THIS TIME!), full skeletal survey. I am making the most of this week, as it is the only week I will not be going to any hospital appointments! Yippee.
My…[Read more]
Kazzam2 replied to the topic It's back! 17 months after SCT in the forum General 9 years, 8 months ago
Hi Mavis,
Thanks for your best wishes and reminding me about my toolbox! 😉
Hope you are okay xx
Take care
Love
Karen
Kazzam2 replied to the topic It's back! 17 months after SCT in the forum General 9 years, 9 months ago
ps,
sorry Megan, only just seen your second reply.
That sounds a bit of a cocktail Phil is on, I hope it works out for him, sorry to hear of chest infection, they gave me really strong antibiotics for mine, shifted it.
Thanks for replying and best wishes
karen xx