Kazzam2 replied to the topic It's back! 17 months after SCT in the forum General 9 years, 9 months ago
Hi Mavis,
Thanks for your best wishes and reminding me about my toolbox! ๐
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
Kazzam2 replied to the topic It's back! 17 months after SCT in the forum General 9 years, 9 months ago
Hi Megan and Vicki,
Thanks for replying and your kind words. Good luck to Phil and Colin on their treatment/jouney.
Vicki, I have stem cells (my own), in storage, but whether they would do that so soon after my first. I went on trials after diagnosis, and did 4 or 5 cycles of Thalidomide, then prior to my sct had mephalan (made me very…[Read more]
Kazzam2 started the topic It's back! 17 months after SCT in the forum General 9 years, 9 months ago
Hi all,
I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast itโs coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by t…[Read more]
Kazzam2 replied to the topic Bloods for 3 monthly clinic, what if???? in the forum General 9 years, 9 months ago
Hi all,
I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by this…[Read more]
Kazzam2 replied to the topic Bloods for 3 monthly clinic, what if???? in the forum General 9 years, 9 months ago
Hi all,
I have not been on for a while, been busy feeling a bit sorry for myself, as my November checked up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by…[Read more]
eve replied to the topic Christmas. in the forum End of Life and Grief 9 years, 11 months ago
Thank you Richard,that was kind,
I often think about Dai,and others and people who have stopped posting,like Jo .
Deb Bones lost her fight just after Christmas as well,it’s a sad year all round for many of us,but we do live in hope that away to control Myeloma is coming,plus we have the knowledge that all the people on the trials helped
I am…[Read more]
eve replied to the topic Liquids tasting horrible after stem cell therapy in the forum Side-effects 9 years, 11 months ago
I found they gave my husband the anti sickness pill to near his meal!!!!
If it’s taken half an hour before a meal it settles the gut,so that might be worth trying,and yes some hospitals keep you in until you can hold down your food,Slim just lied!!!! But that was Slim.
eve replied to the topic Liquids tasting horrible after stem cell therapy in the forum Side-effects 9 years, 12 months ago
Try a piece of pineapple to clear the pallit ,drink anything you can,it’s hard,fizzy drinks helps,it’s just a matter of perseverance .
eve replied to the topic Lenolidimide or Dt-pace?? in the forum Treatment 9 years, 12 months ago
Hi
I am sorry to hear about your news,it’s not very nice when all hopes seem to fade,!
You must be absolutely shattered with all that’s been going on since last January,with hardly any time to take everything in,your experiences of hospitals is becoming more commen place,waiting hours just to be put on a drip,when your husband was so ill,it is…[Read more]
eve replied to the topic Heartbroken that he's gone in the forum End of Life and Grief 10 years ago
Hi Rosie
So sorry to hear your sad news,it heart breaking if you are not expecting it to be so sudden,I had Time with Slim to prepare are selves for what was going to happen,you can never tell with Myeloma all it takes is an infection or pneumonia ,I nearly lost Slim at the very beginning with pneumonia,so we felt lucky to get another 3 years…[Read more]
Kazzam2 replied to the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General 10 years ago
Hi Dawn, I too attend attend the LRI, and like Tony I attend the special clinic as like Tony I am on the trial. However, my latest visit (12 days ago), I had to go to the usual clinic, there was a 2 hours delay as there was a shortage of consultants, I was eventually seen (Dr Barton) two and a half hours later, and then I was sent upstairs for…[Read more]
Kazzam2 replied to the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General 10 years ago
Hi Dawn, I too attend attend the LRI, and like Tony I attend the special clinic as like Tony I am on the trial. However, my latest visit (12 days ago), I had to go to the usual clinic, there was a 2 hours delay as there was a shortage of consultants, I was eventually seen (Dr Barton) two and a half hours later, and then I was sent upstairs for…[Read more]
eve replied to the topic Any advice really welcome! in the forum Newcomers 10 years ago
Hi Fuzz
Well you are showing some signs,that could be a number of diseases,a simple blood and urine test should show the possibility of Myeloma.
Doctors only come across Myeloma once in a life time as there are only 3000 cases a year in GB.
I would make a note of your weight and height,plus how many times you feel sick,your kidney functions…[Read more]
eve replied to the topic SLIM in the forum End of Life and Grief 10 years ago
Hi Vicki
Nice to hear from you, I think you are doing the best thing not coming on here to much when you are in remission ,best to lock the Myeloma away in a cupboard mentally ,and enjoy life as much as you can,because we all know it finds you in the end,so enjoy today.
I have good and bad days,try to keep myself busy and out of the house,after…[Read more]
eve replied to the topic Lenolidimide or Dt-pace?? in the forum Treatment 10 years, 1 month ago
Hi Maijic 30
Reading your husbands history,he has had thalidomide ,then Velcade then pomilidomyde has had his STem cells harvested,then Polidimide and because he has an agressive Cancer they are recommending he has DT pace,and in between this he has had pneumonia!!!!! Plus he has had compression on his spine,hence radiotherapy.
He has age on…[Read more]
Kazzam2 and cupcake70 are now friends 10 years, 1 month ago
Kazzam2 and janw are now friends 10 years, 1 month ago
Kazzam2 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years, 1 month ago
Hi Cupcake70,
Firstly hello and welcome, I do not get on here as much as I would like but it is great and a friendly and very helpful site, quite unique to us!
when I read your post and concerns it took me right back, I am post sct approx 22 month, not all plain sailing but well worth it. Like Wallace I found the Melphalan awful. but since early…[Read more]
Kazzam2 replied to the topic Testing for vitamin D levels in the forum General 10 years, 1 month ago
Hi all, I too take the Adcal and Zometta, not sure if my blood is checked though. At my zometta seesion this week I was told my sessions are to be changed to every 3 months instead of every 6 weeks. Usher (nurse) said this is good news, I will ask at my next clinic though.
Regards to all
Karen