Hi lynn,
Obv’s we can only speak from our own experiences and everyone’s is diff.
I’ve had 2 sct and they worked well for me but I am alot younger which will defo make a diff to the recovery time! As for your lives getting back to norm, I thk you’ll have to accept that there will be a new type of norm but and manage it diff, but as his recovery gets better the new norm won’t seem so bad but it’s the time factor for healing that I thk your finding hard to adjust too. My treatment now has put me in recovery mode and it takes it’s toll…esp on our partners too! Try to ride the wave as it will eventually get better.
Good luck
Daz
Hi all,
I’ve read all these posts and feel I can say I’m abit of an expert in mm now. I’m 59 and have had I for 10yr’s which to be honest I’m lucky as treatments struggle to go that distance. I’ve had 2 sct’s then put on leno that didn’t work so trying a trial drug for me now as running out of options. What I would say is your whole life has changed and it will never get back to where it was but if your able to accept the change then you can make a new journey for yourself and ur fam. Your body won’t ever be the same as your finding out and it is most frustrating but you can start doing diff things u never used to and accept it and life becomes that bit more bearable…I hope you are able to work something out so your not always feeling fed up.
Dazz
Just thght I keep you updated as I posted the 2nd thread not long after they gave me the 2nd dose chemo.
I was expecting perhaps high temps and low BP like I got from the 1st dose but my god, didn’t I get a really bad crs reaction to it. My whole body went into convulsions and the pain thrgh my bones was undescribable. I was writhing for 6 hrs and the dr’s hadn’t seen it b4 either so were at a lose of what to do and dosed me fully with morphine but that didn’t touch it! I just had to ride the wave screaming in pain until the effects wore off basically.
On a plus side, they took blood’s the nxt day and they have said that all that pain showed it was working as my lite chains had gone down from 1000 to 15 which is amazing. Just awaiting my blood levels to come back up now so I can have the final dose but they don’t expect the same reaction…fings crossed.
Daz
Hi there,
Yes I was taken off as it wasn’t working for me and side affects were just to bad so they took me off and gave me a 3wk break to get it outta my system and stuck me on a trial drug…isatuximab.
I am updating everyone on how that is going on a different thread.
Hope they restart you on something soon
Daz
Hi there,
So sorry to hear how it also is affecting your relationship.
I can only speak from my experience and obviously the patience I’ve chatted to.
As you feelI too felt I wasn’t being a good partner only I am a husband but it still feels the same. We haven’t been able to sort the physical side but thrgh alot me honest tears and talk and love we’ve grown stronger but the thght never goes away. I’ve found that their isn’t really a proper or good answer I’m so sorry but I hope wot are able to work something out that takes the pressure off.
Hi all,
As promised I said I would keep updated on this new treatment I’ve started. Isatuximab.
All the consultants and myloma/hematology team seem really excited about it. I had to have a dose of 3 courses over 6/7 days at certain intervals and stay in hosp to monitor reactions. I had the 1st dose Mon was due nxt Thurs but obb’s just went crazy nxt day when it kicked in. Had to put my follow up dose 2days later than planned until I was under control which was worrying as they’ve only got a 2wk window to get them all in or start again. I’m still waiting for reaction from that but hope things are calmer. This is 5th line treatment for me so I’m hoping it works….side affects have been so much less than anything else I’ve incurred thgh so if this has a poss affect as they hope it will be great. I will keep u updated as I learn.
Dazz
Hi
Thx for your reply. It’s a treatment I’m starting soon and haven’t heard much about it so any info helps thx.
Daz
Thx for your reply,
Yes, abit late but all experiences in this forum I find helpful.
Thx
Daz
I personall would ring his triage number or the number you’ve been given tomo and let them know that he can hardly get out of bed. It does seem a little early…they might reschedule.
I can imagine what he looks like and feels like…he prob’s…if u’ll forgive the comparison, looks like death and feels it but it does turn around eventually. I was 56 and it took me 3 months to get to a decent place and everyone is different but I believe his quality of life will be much better when he’s on the mend.
Daz
Hi Lynn,
On my discharge from hospital, both times I spent my recovery at home with no visits from nurses or Dr’s. I had family come round as long as they were healthy.
I also had to visit hospital for blood and line removal but I just wore a mask. I wouldn’t worry to much as every day now hopefully will be a recovery day and they wouldn’t ask him in if they were concerned.
All the best
Daz
Hi Lynn,
It’s good to hear he’s soon going to be home. I thought I’d let you know what you could poss expect.
His recovery will definitely be 100% quicker and better at home as you said but my recovery still took 3 months. It took a long time for my appetite to fully return too but it did. I would just recommend to go at his pace but try and get some exercise in eventually. It’ll be worth it when you both get your lives back.
Daz
Ah Lynn,
Your description of what he’s going through brings it all back.
When the chemo kicked in for me I didn’t eat for 10 days and lost 3 stone, the smell of food made me feel sick. Drink was the main concern and I didn’t want to do that but forced myself to.
Wait until the green diarrhea kicks in too. His age may make recovery time longer too. All these are expected symptoms thgh which they’re ready for its just not nice for you or hubby.
On the +side thgh once that long wave has been ridden and in remission quality of life is so much better!
As you said I thk this forum is very good as everyone’s experience is different and it does let you know your not on your own. I’ve always said what your partner has to go through they just aswell have myeloma too as its just as distressing for them,if not more so. I’m keeping all crossed for you and hope thing’s improve soon.
Daz
Hi.
I have had 2 sct’s that put me back in remission and I’m also epileptic but each time I was in rem I was able to live near norm life. I didn’t even have followup meds after a period. I was 55 at the time so quite young. I travelled with fam abroad and prob’s done alot of things I shouldn’t of, the point is I was physically able too however I don’t know the side affects he may get from maintenance or how old he is. My recovery took a good 3-5 months thgh to get back to full appetite and physical strength etc. But worth the wait.
Hi Lynn.
I’ve been reading all the comments with great interest as I am on third line treatment now after 2 sct’s. I thought I would give my experience so it may help you. I’m 59yr’s now and was relatively fit before the sct’s and am also am epileptic. Cutting a long story short, it took a few days until the stem kicked in but when it did the side effects were awful! I only had to endure for 3wks thgh and was out after that with a 3-4 month recovery time at home but it put me in remission for a couple yr’s each time and I was a totally diff person. I do know that there were others that were in for months thgh as they were older and found it tougher. If you can ride the wave I personally thk it’s a good thing as you get ur life back for a while but it is a tough wave to start. I really hope you too find it beneficial. I’ve not heard one person say it was the wrong choice. I even tried for a 3rd but they say I cant and it won’t benefit me so I’m on a diff med and I don’t like it. Plz keep us updated and hope all works out.
Daz
I would like to hear from anyone who has had chemo/stem trans and am curious if they had an active sex life before have they got it back. I don’t want to think that there’s no hope for me because of this unfortunate circumstance although I do understand how lucky I am…in the loosest term 🙂. Because it’s not just me, it also affects my wife.
I do think what you have said..macklebae is probably correct though unfortunately. And thankyou for replying!
