[claireroe50Participant]

Hi found out 11month ago i had mm age 49.had 6 cycles of velcade which worked and in sept had a auto transplant.
have been a bit achey in arms and back. unfortunately my pp has appeared and i was due for allo next week which now wont be happening .my head is goin round and round..they.l now keep an eye on pp and other bloods and treat when they have to.. but what next? Has anyone else experienced this and what route did u go down?have always been so posotive but this seems to have knocked the stuffing out of me id be grateful if anyone can share there experiences. Thanks luv claire

[mickackParticipant]

Hi Claire..I was diagnosed in october 2013 @ 47 and had my first stem cell transplant in april 2014 ..had good remission but relapsed may 2016 ..so just had my second stem cell transplant December…feeling a bit tired but the normal for this malarkey :)…now they talking about trying to find a match for stem cells from a donor as my siblings don’t match .I am not Keen as I’ve had my fill of hospitals but what can we do …our life in their hands..have they talked about 2nd stem cell transplant..did they get enough from you the first transplant to use again?

Mick

 

[claireroe50Participant]

Hi mick thanx for reply.im going back to freeman in 2weeks so il see what they say.said in future if get it down another is possible and stil even maybe in future an allo as my sister was match.its just in my head all the time at minute the feeling achey and whats next .waiting for next blood tests .getting me down a bit which has,nt been like me through most of this till now .and i think sheer disappointment but onwards and upwards eh. Hope you carry on revovering well from transplant take care claire x

[mickackParticipant]

Hi Claire ..yes I was in freeman also..They gave me my own room for 2 weeks this time..posh eh..I was from 19th dec ..in christmas day and new year day and got out 3rd Jan ..didn’t really celebrate tho haha.. am from durham area…really good news about stem cell match Claire that’s really good u know …best match are from siblings…I’ve been here before with the chemo/stem cell drama. . but it still don’t get any easier but feel better when it’s back to sleep and I can feel normal and get back on with my life..I totally changed my diet 2 years ago and it made such a difference to my life physically and mentally. .I saw my consultant at freeman end of January and spent an hour or so in Maggies just to chill out and talk to others who understand..check their website they have some really good activities and groups daily ..I really like Maggies and I am thinking of going up one morning a week just to have a look out. I tend not to worry about it all anymore claire as it just wastes my time and energy and time is very important..and I can’t do anything about the future anyway. .Not in control of this one as you will know also..what I can control is my food and my mindset…chemo takes a lot out of the mind and body and a lot of people don’t understand how it affects us…

Keep in touch Claire..its good to talk 🙂 x

[annlynnParticipant]

hya mickack i also like you had transplant in 2014 but relapsed 2016 after two year remmision talk of me having second sct was nervous about doung it again but well well see i was freeman also i know i got through it but its hard so ill have to make a decision my daughter getts married in september so it wont be before that take care. annlynne

[claireroe50Participant]

Really i live down the road in h.pool. yeh am a born worrier about anything cant help it lol.. doing my best though, been fit and healthy just bit achey at minute.i know really good shes a match.you got your own room mind a suppose more private if you had side effects which i did yeh ive nipped in maggies before to have a look about.i have a good family n lots of friends but sometimes think we need to speak to people who are going through the same and i know were all individual cases but helps to hear posotive stories x take care

[mickackParticipant]

<p style=”text-align: left;”>Hi Ann. .yes it’s difficult but it was the next step on the ladder of treatments they offered me..As they kept saying I was young enough to have it a second time…I kept saying I don’t feel young especially with what they do and put into me…yuk!! But it puts the little devil back in its box and I to be honest I get the best remission through it..but yes it is very tough …yes Claire we are all individual but the treatments are very harsh…I just try to get on with it…family understand that the treat ments have side affects so they jusr go along with how I feel..tough for them also..but there is nothing they can do when I am on treatment..but how can anyone truly understand unless been through it</p>
<p style=”text-align: left;”>Never mind… one day one of these new trials will actually put it in it’s place once and for all 🙂 keep positive both of you.. even though it’s easier said than done sometimes…</p>
<p style=”text-align: left;”>Mick</p>
<p style=”text-align: left;”></p>

[claireroe50Participant]

Hi mick yeh not too bad hopefully find out more next week.just been up and down at minute think knocked the stuffing out of me . What treatment did you have before your last transplant?. Hope you continue to recover well..ypur right though good to talk .claire x

[mickackParticipant]

Hi Claire

Hope all is well..I was on velcade and the dreaded steroids for 6 month before my second transplant over Christmas. .I am back to see consultant at the end of this month to talk about allogeneic transplant..Ifeel able to discuss it now with a clearer head. .as I was only out of hospital 3 weeks when I had an outpatients appointment to discuss my next transplant.. tbh I was still a bit traumatised from hospital so didn’t really want to discuss it..I am going to ask for people’s honest opinions on the forum of how the allogeneic transplant has affected them.

Need honest feedback from people…here goes 🙂

Mick

[claireroe50Participant]

Hi mick .hope your ok .yeh read the comments it is a scary thought the allo and i think your right it is good to hear peoples experiences ..because my pp have started to go up only 5month from 1st transplant they now watch amd monitor levels and then treat.then the plan is auto and then allo quite quickly after auto providing everything goes to plan.hope you have clearer picture for when you go back.hope you keep recovering well take care claire

[mickackParticipant]

Hi Claire…yes I know what you mean but I have to know the truth from people who have gone through it..but like we all know with this cancer it is so individual and what is good for one maybe bad for another..maybe they won’t find a doner for me so then my choice will be easier..yes they have to do the allo shortly after the auto for the best chance of it working so they recon. . hope your pp stays down Claire…and really hope you get some more remission time..

Mick

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