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
Thanks for your reply Kevin…yes keeping positive is good for the mind and soul 🙂 I have changed my diet radically over the last 2 years of the 3.5 years of having mm..that really helped me..gotta live with my unwanted tenant but hes not getting all his own way 🙂
Take care all
First of all thank you both so much for sharing your personal experiences with me..it means a lot believe me as these are the things I need to know from people who have actually been through it for real..not just script and verse from consultants (fantastic as they are) who have told me the pros and cons from the stem cell transplant manual 🙂
I had a fairly bad experience in hospital over christmas while having my second stem cell transplant as I was in isolation for 2 weeks and was poorly from the chemo and various other side effects.. . so I just feel very anxious at the thought of spending a long period of time in hospital..with the real risks posed by this nxt treatment…its all I have thought about over the last 2 months as its going to be one of the biggest decision of my life so far..i know i should be enjoying this remission instead of thinking about how i am going to be made poorly in hospital again….I go back to see my consultant at the end of March so they can discuss further my nxt plan of action which in their eyes is the transplant ..I lnow they have to do it before the myeloma comes back but i feel really pressured to make my decision.. i feel as if I am on a production line..and to be honest would just like a little time to feel in control of my life again..I know this might be asking a lot of my unwelcome guest myeloma and i know i have lived longer than others…for which i am truely grateful. .
we are all individual and i know the pros and cons…but this next treatment will be a real test ..as you both know already
Thank you both so very much for your help. Believe me it gives me a better insight and will help me in making my final decision ..it is going to be my choice in the end I know..I will let you know what I decide
Take care and thank you
Mick
Hi Jason. .yes the timescales are about right as Kevin said…Ive just had my 2nd stem cell transplant over Christmas. ..I started velcade may 2016 for 6 months then stem cell transplant December 2016..
I had 2 years good drug free remission after my 1st stem cell transplant in April 2014…
Kevin I see you had really good remissions. .is there anything extra you did to help you stay drug free for that amount of time…I changed my diet etc and I know we are all individuals with this cancer but any advice you have on what you may have done would be welcome 🙂
Mick
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
<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>
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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
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
Your very welcome Claire ..There will may be some changes in moods and eating/sleeping patterns as in everything when the treatment starts. .but as long as you look into the side effects and ask questions of the doctor and try to read and understand the signs,sometimes it may be repetitive but it’s the chemicals..If you have done all the above then you have truely done your very best so far and thats all anyone can ask oh and try to stick to this website!!..This is the only one you need for the right info, maybe try not to ask Dr Google to many questions 🙂
my family just did things for me without asking permission after a while as I was a pain they said…when they asked me if I needed anything doing I said “no” due to me being stubborn and I think when I found myself out of control due to this silly inconvenience …I tried to control silly things. ..but I did need help it was just as the father of my family I lost a little bit of my father figure role…and wanted to protect them from what i was going through…but that’s not the way I know now 🙂
Small gentle steps and one day at a time…its the only way claire 🙂
Mick
<p style=”text-align: left;”>Hi.</p>
<p style=”text-align: left;”>First of all try not to panic …its a huge shock (understatement) to everyone…especially your mam..I was diagnosed 3 years ago at the age of 46 and it took me 3 months to go anywhere near this fantastic website …as I said it’s a totally numbing shock so allow your mam to do things in her own time…Small steps and trust in the doctors as at the minute they know the plan…its fantastic your getting the info your mam will need to help her and of course your family through the emotional times ahead …she needs you to get the info to give her (small steps be careful of overload)…It was all to much for me to take in initially and I was an ex marine for years and it still put me in shock and limbo so auto pilot gets engaged and trust in the pilots (doctors) is a must in the early days till the shock becomes manageable. ..ime fit and well …had all the treatment they could throw at me and still standing 🙂 ….have family meetings and talk about everything…she will need you all even though she will put a brave face on coz as a parent they dont want their kids to worry..</p>
<p style=”text-align: left;”>Hope this helps ….take good care of yourself also as when a family member gets cancer you all walk their path..so be mindful of your emotional needs ..There are fantastic treatments and fantastic doctors and people who will help…Try not to be afraid …I know it’s hard but I and others are on the journey also….you are never alone….</p>
<p style=”text-align: left;”>Oh I’ve found that diet was essential to my recovery..look out for all the good cancer fighting foods…They really have helped me stay strong and positive</p>
<p style=”text-align: left;”>Sending positive energy to your mam you and your family</p>
<p style=”text-align: left;”>Mick</p>
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Sorry nearly 8 months post treatment…time flys 🙂
Hi
I was diagnosed with mm this time last year, I was very poorly, straight onto the 3 combo chemo drugs for 6 month and then stem cell transplant and high dose chemo in april.
2 weeks in the care or the fantastic nurses at Freeman hospital newcastle…it wasnt fun but I got thru it with a little sickness and a lot of fatigue. Saying that the guy in next bed to me was on the identical treatment and he absolutely sailed through it, so we are all different.
I was allowed home after 2 weeks when my bloodcount was up.
I went home and spent the next month really tired and fatigued..but as the weeks went on I became stronger both mentally and physically…2 months after coming out of hospital I did a sponsored walk up a small hill at the lake district for our local blood cancer charity.
ime 6 month into my recovery and touch wood have had no complication and feeling good….
its a bit of an emotional rollcoaster as the treatment in intensive by nature but you will get through it as we have no choice do we
be positive and good luck …. you will get through it:)
Mick 48
Ime 48 just gone
mick
Hi.
I was diagnosed with myeloma this very week last october…Ime just gone.
I had blood transfusion..biopsy and put on 6 months tablet chemo combination within the first week of diagnosis as I was very poorly.
I was in total shock for them 6 months and with the initial chemo meds very emotional.
that finished in march and in April this year i had a stem cell transplant and high dose chemo… This wiped me out for a couple of months…
BUT
I’ve just walked up a mountain at the lakes for out local blood cancer charity and I’ve never felt better. Both mentally and physically.
The last year has been tough but you will get through it..We have no choice do we
the quicker n younger the diagnosis the better so it dosnt affect the bones.
talk about it and get all the info you can…be positive as it really does help…your story is exactly the same as mine and ime still here 🙂 ….and the new meds they are bringing out are getting better and we are living longer.
It’s so hard on the family also but you must keep talking an get as much help from all the relevant agencies as you can
take care
mick
Hi
Ime post 6 month sct and have just done a sponsored walk up the lakes raising 1.147.29p for bright red our local blood cancer charity (Newcastle)…yes the treatment does make you tired no energy etc but you will get through it and day by day you will get more energy until after a couple of month you will feel ok again…I understand that we are all different and the effects can vary but trust your consultant as they will tell you exactly what will happen and how you will feel…let your family in believe me they are all going through it with you in their own way anyway so if you all totally understand what’s going to happen then you can all go through it together. My 2 weeks in hospital were long and some days I didn’t allow my family in to visit because I was to lethargic. ..They will understand if you tell everyone that there will be days like that…like all of us with mm we have to put our faith in the fantastic staff in the wards who will look after you believe me they are angels and I will never forget the care…well I won’t forget because it’s life changing (understatement).
We are all hear for you and know what your going through…ime 48 last month and was very poorly this time last year on diagnosis but I got through it and so will you…We have no choice have we 🙂 but keep fighting and keep positive
Mick
