[PerkymiteParticipant]

Hi Bryn, At 37 you must have been shattered to hear the bad news. I am 71 and I was 66 when diagnosed, then 5 years ago this was considered an old mans decease, but I see more and more youngsters. I am not really up on the latest treatments now, having settled into a routine with the treatment I get and am happy with.

However the difference between Allo Stem Cell Transplant and an Auto are quite simple. Allo you are given Stem Cells from another person – a donor – might be a relative or could even be a stranger. Obviously the match to you must be very very good. In an Auto you go through a stem cell harvest of your own cells and they are then reintroduced to you during a Transplant. In both cases you have to have reached an “acceptable” level in your Chemo routine that you will have before the Transplant i.e. your paraprotiens must be low, you must be fit and all your organs must be in reasonable shape etc…. The difference is that in an Allo you have uncontaminated stem cells, whereas in an Auto your stems cells, that you harvested, will have some Myeloma in amongst them. The other big difference is the Allo is a lot riskier than the Auto. Your own Stem Cells will not be rejected but in an Allo your body could reject the Donor’s Stem Cells.

The bone strengthening is normal – I have been having first tablets and the injections for the last 5 years.

I hope this is of some help. Keep in touch

Kind regards – vasbyte

David

[PerkymiteParticipant]

I seem to move between Constipation and very loose bowls that can explode at any moment. I won’t recount some of the problems I have had. I am off Chemo at the moment and my bowels have quickly gone back to normal.

When on Chemo I note bowl movements on my calendar and as soon as I see a gap I start taking Laxatives to help. Not a lot just one dose to start and then two the next day and so on. I normally also eat lots of fruit and take prunes when constipation starts (well they help me LOL). Point do not take Laxatives within a few hours of taking any medication, i.e. take medication at 9 laxatives at 1 for example.

Hope this is of some help

Kind regards – Vasbyte

David

[PerkymiteParticipant]

Treatments have moved on since your Uncle Tom died. Dying will still be traumatic I know but I suspect your Dad will live a lot longer than you imagine at the moment.

I started out on this road in 2009, the prognosis then was “Sale by Date” Jul 2011, I am still here! And I have Prostate Cancer to go with the Myeloma. I went down the normal route CDT, Stem Cell and then on to Velcade (which failed for me). 10 months ago I was put on Revlimide and suddenly I went into Remission, something that had never happened in all the other treatments I was always 2.3 pp or above.

So, Do not give up, do not write your Dad Off just keep going like you did on your sponsored runs.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

It sounds as if you are going in the right direction Andrea. Most of the Chemo seems to give the sleepless nights etc…

Keep going it is all worth it in the end.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Thanks Andy, I am not on a Dex night, although it would have been if I was still on Chemo, just cannot sleep at the moment. Everybody ask why they have stopped the chemo but I have no clear answer at the moment. It is certainly something to do with the operation on my Prostate Gland on the 13th August. I will ask the Consultant when I next see him on the 22 Aug, mind you he is a great guy and I am sure he is determined that I am going to live to 100! LOL.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I did the same, the Macmillan nurse at Musgrove Park Hospital. I got the indefinite level when I I re-applied after 18 months.

Is PIP the replacement that is being brought in, not up to date nowadays LOL.

KIndest regards – vasbyte

p.s. Teeth out tomorrow afternoon – just not looking for ward to it.

[PerkymiteParticipant]

yes, got to agree I miss Dai’s comments.

[PerkymiteParticipant]

Hi Megan, my neuropathy is about the same. I call it spongy feet because that is what it feels like. I also have a numbness on the right hand side of my right leg, at hip levle. I only really notice these things at night, During the day they just fade into the background.

You are right Eve, I have done so much since 2009. Coffin is finished he he. I recently replaced my lovely privet hedge with a really good looking solid wooden fence. It means that cutting the privet is now a thing of the past. However, I really liked my hedge. Being ex Army Sergeant Major you can imagine it was dead straight all the way around. I use to enjoy driving down the road and seeing it so neat and tidy. I miss my Boarders, 360 Geraniums made a hell of a display. I have retained the border around the car port and put Gladioli in this year. At the moment they are just showing above my new fence. I am trying to put in perennial plants that will not require replanting next year. I have got 40 Penstemon in the car port Border I planted late but I should get a good display late August I think.

Thanks for the support always welcome. Mo and I are not phased by the possible Skin Cancer. As Mo says,”How many times can you die?”.

As Tom would say onward and upward – Teeth extraction next on 30th Jul.

Kindest Regards – Vasbyte

p.s. I don’t know if I have mentioned this before but talking of Family Tree Eve I discovered my grandfather was a Salmon Poacher on the river Tweed and spent 30 days in Jeburgh Scotland nick! Oh dear skeletons in the cupboard or was it fish bones?

[PerkymiteParticipant]

Well done Andy, just keep going, keep bl**dy well going.

I had the suspicious scab cut out of my head two days back now. Still sore, I have the stitches out in about 7 days. When I will get the results I do not know. I suddenly realized walking around the hospital just how many old men seem to have plaster patched on the their heads, just like mine. I wonder if I have uncovered some sort of macabre ritual going on among the Doctors! Joking just joking, I think.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi, Yes my consultant told me that they are not quite sure what Dex actually does but it does seem to aid Revilimide to do its job. I go for my monthly check up on Friday. I am on my 10th cycle – I think of Rev. Let you know how I get on.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Well yes, but at least you have now got it. :-)) Well done.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Annette, not to wordy at all thank you for the reply. I was diagnosed in 2009 after breaking my neck getting out of bed one morning. I have been down the normal pathway and had an SCT although I was 69/70 at the time. I never made it into remission and the second line Velcade failed for me, I had terrible PN.

I went onto Revlimide nine months ago. I take 25mg for 21 days, 7 day break, then I start another 21 days and so on. However I take a steroid (Dexameasone) 10mg (it used to be 20mg) each Monday to go with it. I am in “exceptional remission” my Consultants words, at the moment and my Bloods are normal.

Kind regards – vasbyte

David

[PerkymiteParticipant]

Hi Annette 4.5 years on Revlimid and this is your first treatment! That is worth a WOW. Am I miss reading this, did you not have CTD or SCT before going onto Revlimid?

What dose of Revlimide are you taking and are you taking steroids with it?

Kind regards – vasbyte

David

[PerkymiteParticipant]

Best of Luck Don. What more can you really say :-)))

Kind Regards – vasbyte

David

[PerkymiteParticipant]

And Me, I had three cycles of Velcade and had bad PN.

I went straight onto Revlimide and within 3 cycles was in “excellent Remission” – Consultants words. All blood readings at normal levels and no sign of Myeloma. This is the first time in 6 years that I have gone into remission. 25 mg Rev for 21 days and 7 days off with now 10 mg Dex (was 20 at start) every Monday morning.

Kind regards – vasbyte

David

[Author]

Posts