tom replied to the topic New on here in the forum Newcomers 11 years, 8 months ago
Hi Rob
And a warm Welcome to you and well done to you.
After my SCT in 2009 (Dec) I went onto Zometa for 2 years am now in remission and drug free 😀
The Zometa might give you symptoms of Flu but that will soon wear off.
Good Luck and well done so far 😀
Tom Onwards and upwards
tom replied to the topic RCD cycle 13 in the forum Treatment 11 years, 8 months ago
Hey Andy thats good so you say if you reach a a point then the drug company pay ALL cost of the drug??
Tom Onwards and Upwards
tom replied to the topic Franks SCT take 2 in the forum Treatment 11 years, 8 months ago
Hi Jean and Frank
Your welcome and hows things doing ?? you dont want to sit in hospital watching bad movie's get Elaine on Ipad for Face Time it will do you both good Lol.
You all stay well now and Dai you are correct.
We should have a thread Just for you dai as your words are words of Comfort and Wisdom my Friend 😀
Love Tom Onwards…[Read more]
tom replied to the topic Whether to do a 2nd stem cell or not? in the forum Treatment 11 years, 8 months ago
Hi Georgina
you know I cant answer for your dad but i can tell you what I just might do if I was offered a 2nd SCT First I would look at how long i got in remission with the first, and 2nd how good the alternative is Ie the drug only route, when i got better from my one and only SCT I said openly that I wouldn't have a problem having a 2nd, but…[Read more]
tom replied to the topic So it begins in the forum Treatment 11 years, 8 months ago
Hi you two
Pleased its going good good luck for resuts on that dreaded BMB
Tom Onwards and Upwards x
tom replied to the topic Garry's SCT journey in the forum Treatment 11 years, 8 months ago
Hi Louise
Not a problem its now a wait and mor wait 🙁 but in the end it is worth the wait 😀 , your dad and you all will be thinking will it ever get better (we did) and one day your dad will wake up and feel 100% Better, not his old self am sorry to say but Better 😎 and that is what all this SCT was for its good to feel that better…[Read more]
tom replied to the topic sct looming but pp plateau at 14 in the forum Treatment 11 years, 8 months ago
Hi Peter
Now I am confused (know it dunt take much lol) am now not sure who to look for on FB lol, is it Stevenson or James ha ha.
Tell your Middle Granddaughter to add me to yours and you can find me as tom.lappin.5 Me thinks but av got a photo on mine so you will spot me he he.
I also dont do good as its not as much fun.
Catcha soon…[Read more]
tom replied to the topic Zometa in the forum Treatment 11 years, 8 months ago
Hi Sarah and Henry
Its always strange when Meds change with no discussion :-S and am sure you do always ask?.
But I was on Zometa and had that for two years post SCT, just had flu like symptoms for a few of the treatments.
Sarah, Frank keep eye out for Jaw problems as it can have problems on the Jaw bone.:-/
Keep well.
Love Tom…[Read more]
tom replied to the topic Any experiences of 2nd Stem cell transplant in the forum Treatment 11 years, 8 months ago
Hi veronica and Georgina
No problems please ask away about anything.
I was diagnosed in Jan 2009 first line of treament was CTD I had 5 courses of it, that led up to my SCT in December 2009 in Castle Hill Hull.
Now in remission and Drug free now 😀 and I now only go see Consultant every four Months.
Dont forget ask away things i cant…[Read more]
tom replied to the topic Mum's beginning treatment on Cyclophoshamide and Bonefos in the forum Treatment 11 years, 8 months ago
Hi Sandie
Now do I say well done in having Osteoporosis :-S Yes i think I should 😀 .
Its not good but its Better than having MM :-S .
I think you should ask if R/T will help ease the pain in your back??, let us know what exercise they say you can do as am sure it will be same as us MM folk should be able to do 😉 .
Am Pleased your Mum…[Read more]
tom replied to the topic Pete's SCT – Done – now the recovery!!! in the forum Treatment 11 years, 8 months ago
Hi Ann and pete
Yes thrown out on day 16 I was 😀 but am sure someone on here has my days beat ??
Hope your Home today Peter and let Ann have that week off you just might need it (I did) and when Elaine went back to work she left me a flask and Pack up for me to eat (if i could) till she got home (Bless her )
Tom Onwards and Upwards xxx
tom replied to the topic RCD cycle 13 in the forum Treatment 11 years, 8 months ago
Hey Andy and Steph
Looks like it will be another nite out for you two 🙂 to celebrate
Shame you didn't see keith, I also wish him Good Luck and fingers crossed that the treatment works for him
Tom Onwards and upwards x
tom replied to the topic Any experiences of 2nd Stem cell transplant in the forum Treatment 11 years, 8 months ago
Hi Georgina
Well I haven't had a 2nd i have only had one.
Would I have another?? am not sure Georgina as I understand treating MM with Drugs with No SCT is a good way to go I think at the moment.
Sorry to hear your Dad's SCT has failed.
Good Luck in the Choice your Dad makes.
Tom Onwards and Upwards x
tom replied to the topic 3rd Cycle of CTD in the forum Treatment 11 years, 8 months ago
Hi Maureen and Ian
Good Luck to you Both and I hope this Cycle passes with none or little problems am pleased the bloods were Ok
Tom Onwards and Upwards xx
meganjane replied to the topic Garry's SCT journey in the forum Treatment 11 years, 8 months ago
Hi Louise,
Phil was like your Dad, he managed to eat a little bit every day while he was in hospital but he did not enjoy it! Phil's upset stomach was quite bad for about seven days and then, although it got better, there was still an unpredictable nature of when he would need to dash to the loo for about another month but everything has…[Read more]
meganjane replied to the topic Phil's SCT Journey in the forum Treatment 11 years, 8 months ago
Hi Sarah,
I hope your hand is healing well?
Phil and I are doing well adjusting to our new normal. Phil has stayed infection free since he has come home and the fatigue is becoming less of a problem as the days pass. Phil still has pain in his ribs, back and legs but this is not as bad as it was last year. We are waiting for a consult with…[Read more]
mhnevill replied to the topic Loss of appetite in the forum Side-effects 11 years, 8 months ago
Hi Tina
I wonder if losss of appititite is one of the longterm efffects of CDT as I haven't has a SCT, but still have no real appitite. I feel sorry for Gordon who cooks for me.
The only up-side of it for me is I have lost some weight and kept it off. However, I find not eating a balanced diet doesn't help the constipation!
Do take care…[Read more]
mhnevill replied to the topic RCD cycle 13 in the forum Treatment 11 years, 8 months ago
Dear Andy
Just to say all the best with the continued treatment. Do hope you are both ablt to enjoy your planned breaks.
Best wishes.
Mavis
mhnevill replied to the topic Our Journey in the forum Newcomers 11 years, 8 months ago
Dear Pheobe,
Like the others, I would like to thank you for your inspirational story and to wish you and your husband many more years free from full blown MM.
All these stories of infections are so scary. It is interesting that the Government is now taking the subject so seriously that they are encouraging the development of new antibiotics.…[Read more]
tom replied to the topic Garry's SCT journey in the forum Treatment 11 years, 8 months ago
Hi Gill
I understand what you say about your Cat am same wi Dog "the Yorkie" 😉
as for Chest Infections well I think thats me also with this Bloomin MM.
Aint heard of a "Lung Nodule" ? what are they doing with it then Gill and what do they about it??
Stay well
Love Tom Onwards and Upwards xx