hello Andy

so sorry your SCT hasnt worked it is so frustrating because you must have been full of hope I hope the next treatment is the one for you
Love Jo x

Oh Kieth
Bl****dy hell I am so sorry I know it comes to us all but we just hope for a little bit longer, go away and enjoy your holiday and good luck for the next treatments this might be the one for you
Love Jo xx

Hi Jen

Welcome to the forum but also sorry you had to join:-( well I cant add anything to what has already been said apart from take one day at a time and go with the flow watch out for raised temp and infection's (gosh av said a lot) and get your Dad to rest when he feels tired.

Good Luck to you and your Dad in the MM Journey.

Tom…[Read more]

Hey Keith well what to say?? you know I feeel for us all when it fails such a darned illness this bloomin MM but am sure you are strong enough to fight it off and get back into remission 🙂

Get yourself off on your Holls and if you can push the MM into the background for a time.

Tom "Onwards and Upwards"

Hi Andy well I am sorry the SCT hasn#t worked for you, this MM is a devil to work out everybody differant with the outcome to the treatment?.

I hope the new treatment works for you with no or little side effects.
Keep strong and well plus dont let the drought wet you hair 🙂

Tom "Onwards and Upwards"

Hi Ali,

Due to an infection from a badly fitted Hickman Line (it leaked anti-biotic under my skin) I ended up Neutropenic and my harvest had to be cancelled. They managed to replace my Hickman Line at the same time as taking the infected line out (after four days of being neutropenic) but It was too close to Xmas to start the harvest procedure…[Read more]

Hi Eve and Slim

Yes its a bugger these infections, I have lost count of how many I have had.
As for the nurse even my grandchildren know the rule Blow Wipe and wash 🙂 and she should know better.

Good Luck and hope the biotics kick in sooner than later

Love and Hugs to you both

Tom "Onwards and Upwards" xx

Hi Jen

Sorry you have joined us but you have come to the best place.

First thing tomorrow ring Ellen she will be able to give you a quick run down and send you booklets.
Stop looking for a cause and and start learning as much as you can about the treatment,you are now on a journey and it is a big learning curve.
Myeloma is Staged and there…[Read more]

Hi Keith,

Regarding the meds for life, I have already broached that subject and the answer seems to be yes. Rev & Dex are therapies, not chemotherapies… therefore you take them until they stop working (median for those who suit the treatment is currently 30 months). I know that there is nothing official beyond Rev & Dex but there are trials…[Read more]

Hi Keith,

I am sorry that your suspicions have been confirmed.:-(

I wish you luck with the Rev & Dex… I am on Cycle 4 and so far so good.8-)

Enjoy your holiday… and then on with whatever it takes to last through to Carfilzomib and the other good looking treatments about to come online.:-)

Dai.

Hi Jen,

Bone lesions are very common amongst MM'ers… some more than others. By the time I was diagnosed with MM I had already had a vertebrae blasted away by radiotherapy due to it crumbling and pressing against my spinal cord. At diagnosis I had two tumours on my head but my frontline treatment CDT, soon go rid of them and now I have two…[Read more]

Hi Alison

I am replying to your post under treatment,it shows in my e mails but not on the board.When I looked into your profile it is not showing a posting,so I have used your last posting to reply.(does that make sense!!!!!)

I think the system is having it,s own blips as 2 of the headings have not been showing on my computer screen. Love Eve.

Well Thats great news dai, Its bad driving on moterways these days without the rain. I bet your both as proud as punch with each other for doing it together.

Good Luck on your next trip and I dont think the next one will be too far away.

Love to you Both

Tom "Onwards and Upwards"

Hi Eva

How is Sue getting on,although Slim is home we have spent 2 days going back and fourth to are local hospital,Slim has a problem with his platelets on Sunday they were 33 today down to 7,there is fine explanation under the Macmillan Site.Explaining some of the reasons why this does happen .

One explanation is having platelets from…[Read more]

Hi Gail
Eve again just realised I am loosing the plot called Howard,Henry,My excuse is i was up with Slim during the night and I have not caught up from all the travelling to the hospital.Sorry Eve

Na then Tery

I love the way you cope with it all I also feel that its a head as well as a body challenge kepp them both strong and you are on to a winner.

Keep strong and well

Tom "Onwards and Upwards"

Ps great photo. I must take my young Bride to Scotland one day soon x

And A Good Morning to you also jacqui, what great news to read today well done Girl and long may it continue 😀

I know itsa a little bit of a rough crossing but the more folk that say its worth the trip the more will take that trip with more ease and less uncertainty.

As for your low levels of energy mine came back to an acceptable level…[Read more]

Hi Gail

Sorry to hear henry is having a hard time,may be a little time in a hospice is what he needs.They will be able to get his symptoms under control and help with his anxiety this is what they do and a very fine job.

You said your self Henry,was behaving so out of character,I think we look on hospices as a place to die but they do so…[Read more]