jmsmyth replied to the topic Myeloma Infoline news in the forum Off topic 10 years, 6 months ago
Congratulations Ellen to you and all the team. A well deserved award
Regards Jean
jmsmyth replied to the topic velcade working in the forum General 10 years, 6 months ago
Hi Maureen saw the registrar and she was happy with franks bloods. The MRI results were not back (he got it last Wednesday) she said that in most cases it’s a good thing as if there was something wrong the report would come up fast. She said she would phoe with the results as we are booked to go away next Thursday and I want the results before I…[Read more]
tom replied to the topic Relapse in the forum Treatment 10 years, 6 months ago
Morning Rebecca
Not sure who will be doing the BMB Dr J did the last one and it was Ok ? Helen done two on me and I had one done in castle hill and that was the worse one .
As for the PN so far its not a problem ? I feel something but nowt to talk or write home about it was worse on my CDT just got rid of it for the darn MM to kick back in again…[Read more]
tom replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 6 months ago
Hi Sarah
Am sorry i have no knowledge of the regime your Hubby has been put on just wanted to wish you both well on the road to remission.
Tom Onwards and Upwards xx
tom replied to the topic Relapse in the forum Treatment 10 years, 6 months ago
Hi June
Sory to hear about your relapse,
had my CTD and Stem Transplant in 2009, but it kicked back in last december.#
I just had my Velcade (Cycle four week three) I have Velcade, Dex and Zometa.
I am doing great with it albeit tired a lot but I listen to my body and when it tells me to sleep I sleep Ha ha.
I asked my Consultant Dr Jalihal…[Read more]
tom replied to the topic Start of a long journey in the forum Newcomers 10 years, 6 months ago
Hi Graeme
Not a problem, I found out that it had come back after having my regular bloods done, but in reality am sure my wife and i had known as i had lost weight again and that for us was an early indicator.
Bearing in Mind all MM patients differ in how they cope from one to another even when on the same treatment that said I had to go on…[Read more]
jmsmyth replied to the topic velcade working in the forum General 10 years, 6 months ago
Great news Maureen. Always boosting to read. Glad you had a nice break. We are odd to consultant tomorrow. Really hate it. Always scared of what she will say
Take care
Jean x
meganjane replied to the topic Post SCT : Sleep Issues? in the forum Side-effects 10 years, 6 months ago
Hi Keith,
It is my husband Phil who has Myeloma and he also has trouble getting a full nights sleep due to the neuropathy he has in his feet from the Velcade he had as his initial treatment. He finds wearing socks to bed helps a bit. Also massaging the feet and legs with cocoa butter can help.
It may also be that your body is still recovering…[Read more]
tom replied to the topic Hiccups?? in the forum Side-effects 10 years, 6 months ago
|Well Good Folk, my tip for the dreaded Hiccups is as follows :::
Fill mouth with water, put fingers in your ears (so you cant hear) and then swallow slowly SLOWLY.
Good Luck it works for me when i get them on Steroids and even the my family and friends everytime
Tom Onwards and upwards xxxx
tom replied to the topic Living with myeloma book: your hints and tips in the forum General 10 years, 6 months ago
Hi Lois
I have one or two
Hiccups My Cure when you get them ::: fill your mouth with water, place fingers in ears to block them, then swallow slowly till all water has gone, (works for me every time)
surround yourself with nice people.
be honest with Family and friends with how you feel, honest it helps you and them cope better
Listen to your…[Read more]
tom replied to the topic Back Pain in the forum Newcomers 10 years, 6 months ago
Hi Susie
Sorry in my late reply and am sorry I cant help as so far i have a little bit of back pain but its (or so am told) arthritis ??? am sure your bloods will tell your Consultant if the Myeloma has kicked in and my advice would be to talk to him or his secretary and ask for more bloods to be taken and let them have a look.
Good Luck and…[Read more]
tom replied to the topic Start of a long journey in the forum Newcomers 10 years, 6 months ago
Hi Graham
Sorry for the delay in my reply, but a warm welcome.
I am age 58 now and had my treatment CDT in feb 2009 leading up to my SCT in December 2009 was in remission and drug free for four years,
So what you are going through is a doable but you will have to listen to your body and when it tells you to rest rest its the only way.
My…[Read more]
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 6 months ago
Hi Keith
Well done you are running nearly 🙂 as for the weight loss mine was a fair lot but my Dr (GP) would have told me that should be my normal weight ha ha.
as for hunger am on it with the Dexam afraid but al cope with it and start to cut down. keep on going like you are Keith
Tom Onwards and Upwards
eve replied to the topic Getting Blood Test Results in the forum General 10 years, 6 months ago
Hi
I would agree with Rebecca,I think it is very important to know at least the basics in terms of bloods and results of test,so this has been my job as a carer,but saying that I do not always tell Slim the whole facts unless he ask me.
As time goes on other factors come in to play,that may effect your body,in Slims case it was a blocked artery…[Read more]
mhnevill replied to the topic Plasmacytoma in the forum General 10 years, 6 months ago
Hi Ali
I has plasmacytoma wrapped round my spinal cord so had to have surgery four years ago. plasmacytomas in soft tissue seem to be dealt with by radiotherapy.
I like to have my blood results every four weeks when I go for Zometa infusion. I am always frustrated that they do not do PP test routinely. I am keeping a close eye on my kidney…[Read more]
mhnevill replied to the topic Good Remission after 5 years- do not give up in the forum Treatment 10 years, 6 months ago
Hi David
Just managed to get back on site after lots of difficulties. Hate this new Sign In set up!
Anyway, good to get on and hear your good news. It is so encouraging that our survival rates are getting longer all the time. I am now in year 4 and feeling good apart from mobility.
May you have many more years and get that trip to Greece as…[Read more]
mhnevill replied to the topic Sad Irony in the forum Newcomers 10 years, 6 months ago
Hi Ian
Sorry your a Dad has been diagnosed with Myeloma. I was diagnosed in 2010 and chose not to have a Stem Cell Transfusion. I took a Course of chemotherapy CDT two years ago and am currently in complete remission. Although the MM did considerable bone damage, I have a four weekly Zometa infusion and this seems to have kept things…[Read more]
tom replied to the topic Have a date for SCT – Argh! in the forum Treatment 10 years, 6 months ago
Thanks izzie.
yes I hope your new drugs help ease your pain.
Helen I am a granddad to six and our home has got toys from one end to the other these iccle toes are used to standing on lord knows what and lord knows how sharp it is, haha
love from iccke ole twinkle toes he he
Tom onwards and upwards x
tom replied to the topic Is velcade effective? in the forum Treatment 10 years, 6 months ago
Morning Rachel
sorry to hear about your Brother, and I wish him luck in the road to remission.
i was diagnosed in 2009, had CTD leading up to the SCT in dec 2009. That gave me four years remission and drug free.
my myeloma has returned and am now on Velcade and Dex, just started my fourth cycle on it and to be fair it’s treated me pretty good,…[Read more]
tom replied to the topic Here we go in the forum Treatment 10 years, 6 months ago
Stanley
Your More than welcome my Friend and to be fair helping others does help me so am sure i am being a bit selfish ha ha.
your getting on good with your Bosses thats a good sign it makes the treatment bearable if you have one less worry
Tom Onwards and Upwards