[majic30Participant]

I too lost my best friend my husband in nov 2014.  He was 46 no age. Diagnosed in jan 2014 and all set for his sct, and out of knowhere and with no prior warnings he was taken …….. My life has been completly shattered i feel numb and helpless. We have 3 children aged 9,15 and 18 … My son is in a bad place very angry and the youngest girl cant mention his name.i dont know how to help them and i know my son wont open up to a stranger .myeloma robbed my children of a kind, fun loving daddy that will never see them grow up….. Its so sad to see xxxxxx

[majic30Participant]

Hi,

 

my husband passed away  last week. I was at his side, this happened so quick. His myelma was aggresive and we couldnt seem to gain control of it.. I wish each and everyone on this journey hope and strength.  I will contnue to support myeloma  and hope one day a cure can be found xxxxx

 

 

 

[majic30Participant]

Hi all,

 

Hubby has discussed options with specialist- and agreed to stay on lenolidimide for 2wks then hv pp checked mid cycle! The dose is only at 15 not 25 so hopefully even with a reduced dose it will still have an effect.

if this doesnt go his way then he will unfortunatly have to go through dt-pace.

He hasnt had very good hospital experiences to be honest and this has a lot to do with his decision makings. Theres just too many drs that come and go giving different advice etc that it leaves us not knowing what is going on.

he had a call last thurs to say he was needed in overnight as phosphate levels were too low?( was told to be in within 2hrs that a bed was waiting) he got to a and e no record!!! Waited 5hrs before treatment was started!!!

he was started on zometa on the monday could this of triggered something?

all weekend hes complained of pain/discomfort in his hips!

he has adcal to take on top of all this plus gcsf twice week……. He feels constantly bloated. Does anyone else experience these same symtoms?

 

[majic30Participant]

Thank you everyone, he still doesnt know what to do, like you say it must be his decision, we have devised a list of questions to be answered……. Maybe that may help,, we  have hosp apt for platlets tm and see specialist after. I personally feel the whole hospital experience  has left hubby  with little strength. Maybe  if we could bide a few more weeks recuperation things could be different, that said  we also dont want to play devils advocarte !!!  We need honesty and direction …… Lets hope tomorrow brings answers and points us in the right direction xxx

[majic30Participant]

Hi chris,

My husband has mm diagnosed january this year….. The journey has been a rollercoaster of emotions. We started on ctd he had stem cells harvested…pp started rising so treatment swapped. This site is great, lovely people  giving their stories and lending a lstening ear ….. Just what you need sometimes x

[majic30Participant]

Where would i find  the blog please

 

thanks

[majic30Participant]

Thank you for the replies:

 

we dont want to swap our consultant at all….. Its just sometimes we see different and get a completly different view on things

alot of the problem from our perspective is TIME ….. There never seems enough to explain things and the reasoning behind them . We know because hubby is only 46 he fits criteria for DT pace, but it doesnt make us feel differently….. We just feel at the moment all of our eggs have been thrown into one basket. We are led to believe the dt pace line of treatment is something that was used previously along the lines of traditional chemotherapy drugs years ago??? I also feel that other lines of treatment should at least be given a chance before we go full on into this invasive pathway. It just seems too much too soon and after having a much more toxic drug cocktail to then go to sct????? Surely he wouldnt be strong enough to cope ??? ( maybe im worrying too much) . I really feel and believe there is no right or wrong way to treat mm……..everyone is different, i have read and scrolled the internet on as much info as possible, based on what we know and understand  we will speak to dr in view of an alternative to dt pace at this moment in time.

it may be we have no option but as mavis stated …… We should be the key players in any descisions being made.

fingers crossed he gets to try a different combination first.

[majic30Participant]

Hi bryn,

 

My husband is 45 diagnosed early this year with mm. He had been having back pain until one day he sneezed and i found him collapsed on the floor unable to move. We discovered soon after he had spinal chord compression caused by a tumour on his spine.this was what was causing his back to spasm.

5 days radio and with help of a zimmer frame he began mobilising.

started with ctd 4 cycles whch knocked thngs to 1.7…….. Had stem cells harvested, but things crept up  not sure why or how i think because there was too bg a gap to transplant but thats my opinion. Now transplant has been delayed and he is on VD, mobility has improved almost 90% reduced morphine, stiff first thing with aching hips he explains.

His pp levels shot up to over 20…… That was result from first dose of VD after next cycle specialist will re check and decide if to try VCD ??? We still find things confusing, but i tend to go on the net etc…… He says he doesnt want to!! I will get him to a support group if one comes up as i feel talking to others will get you through it.

 

 

i wish you well on your journey

 

k

[majic30Participant]

Hi all,

 

things  are not looking promising with sct !!! Husband had check up last thurs asked what bloods were from  june 2nd when he was last in brum…… They were 8.3 !! The previous one was 2.8 !!!!!! Bearing in mind he was due in at qe ths weds. Hes annoyed and really frustrated as no one picked this up in 3 weeks, if he hadnt of asked im sure we would hv had a wasted trip.

As of today we are waiting for a cal monday to see if the sct will go ahead, im thinking it might and hope it does as hubby worked himself up now and is prepared, specialist in home hosp is in doubt as levels have jumped quickly?? What does this mean? Cant a sct be done at 8.3 then? He had some fresh bloods taken 17th june so awaiting these figures. I just assumed since they harvested his cells a while back it wouldnt make a huge difference if they were going back in. Its very misleading and confusing when i look here and see others going into a sct with varying pp figures???  And im understanding that the lower the start figure the better the response.

feeling annoyed no one picked it up, dissapointed with keyworker (not had any input or feedback from) my feelings are that had hubby of been on trial route  hed of recieved much better care ( my own belief) !!!  In fact i know he would of!!

the  next step if no sct is that he goes back on treatment for 4 months, velcade i think. Feeling apprehensive atm

 

 

[majic30Participant]

Hi,

 

hope you dont mind me asking Richard, how come you havent used your own stem cells ? My husband has a brother not tested at present. And we got the impression it was better to use your own stem cells……. We have done so much reading that we still really dont understand which is the right direction we should be going in. We have good specialists at qe but my husband only 45 still cant understand why stem cells are harvested assuming they still contain traces of myeloma and  then are put back in ???? Surely we are just  continuing the cycle or am i way off here??  We thought using a sibling if a match could pose bigger risks????

 

maybe this depends on the myeloma itself?

my husband due to see a specialist next week with a view to going in soon for his sct……. I think hes hoping he can stall and delay this until he really needs it done but the STATISTICS say otherwise so quiet confused this end x

[majic30Participant]

After 3rd cycle para proteins  down to 1.9  it started at 13 does anyone know how far down it needs to go ??? Husband wants a break after 4th cycle .

[majic30Participant]

Thanks Mavis and everyone else… Meeting went ok came away much clearer and hv read through the sct booklet tonight. its a lot to take in ATM but once we know how things are working in the cycles we will be faced with where to go next x

[majic30Participant]

Thanks for your info and advice x

[majic30Participant]

Just wondered if levels were ok and m was reduced below 10% why would u need sct ?or is this something that happens further along…..  he’s not in denial but some things just dont seem clear.

• This reply was modified 11 years ago by  majic30. Reason: Too much personal info

[Author]

Posts