[VickiParticipant]

Hi all

Went to see the special nurse today, she was lovely. She explained everything really clearly, and was ever so nice when I had a few tears.:-) Not sure where that came from, but as Ali has said on other strings, it seems very real now.

The next few weeks we are planned for the Gcsfs, Hickman line fitting (he will have that for nearly a month before SCT), apparently veins aren't too good, the kidney tests etc and then the big date, if all goes well with collection, scheduled for week commencing 20th august!.I have been warned about the sweetcorn smell!.

Colin seems pretty relaxed about it at the moment, although he did say it was a good job he wasnt superstitious because when we got home there was some junk mail from the co-op, has he got a funeral plan 🙁

Still next few weeks wlll see the ups and downs I am sure.

Ali, hope your mum is doing well, and to all who posted on your Hickman line thread, that was helpful in lots of ways too.

Keep well all x

Vicki and Colin

[AliParticipant]

Hi Vicki and Colin

Im glad you got on ok at the hospital today. Its good to meet the nurses isnt it?, they are all really nice and easy to talk to.

Yes, its going to be a very busy couple of months now. Will be sick of hospitals!

Mum is ok thanks. Very tired but has stopped feel sick now, it came in waves over the weekend, but today has not felt nauseous at all. She starts a whole host of tablets tomorrow (anti fungal, antibiotics etc) and starts the gcsfs. Collection to start Monday 16th. Just to let you know Vicki, she hasnt got any pain from the hickman line, its just a bit itchy where she has stitches.

Have a good evening

Love Ali x

[MariParticipant]

Hi Vicki and Colin,

Pleased to hear everything went well with your hospital visit today, It is a lot to take in isn't it.

Steve has had his SCT scheduled for the same week as Colin, he will go in on the 19th August. He has already has his induction chemo, iv cyclophophamide and he starts his GCSF injections tomorrow so he will go in for harvest next Monday Tuesday and Wednesday, exactly the same as Ali's mum. He has not got his Hickman line yet, I must remember to ask him if he has a date for that. Last time he managed to arrange it for the Friday before he went in on the Sunday. it was the thing he most dreaded, not because it hurt or was uncomfortable but because he just hated having it dangling there. He would not have been without it though as it saved so much trouble with all the infusions etc and i think its much more comfortable than a cannula in the wrist or arm.

Which hospitals are Colin and Ali's mum being treated at? Steve is going into Kings College Hospital. I hope everything continues to go well for you both and you keep well,

Love Mari x

[andygParticipant]

Hi Vicki & Colin
I'm glad your hospital visit went well.
I imagine you must be looking forward to the SCT with mixed emotions as you say there will be ups and downs. Hopefully it will pass without any problems and you are soon looking back wondering what all the fuss was about.
Mari I've had my Hickman line fitted for a few months now and find its better than been stuck with needles every week for blood tests and infusions. I have mine taped up so it just doesn't dangle though it is still a bit of a nuisance.

Hoping everyone coming up for their SCT has a successful and speedy recovery and a lengthy remission.

All the best
Andy

[AliParticipant]

Hi Mari,

Mums at City Hospital in Nottingham.
Speaking to her on the phone last night and shes been looking at some of the medication she has to take, one says she cannot drive and another says she cannot drink milk. Cant understand the latter one as on Monday (collection day) shes been told to have a milky breakfast. Looks like another phone call to the daycase unit!

Love Ali x

[MariParticipant]

hi Ali,

The harvesting process can sometimes reduce calcium levels, and low calcium can make you feel pretty poorly. They keep a close eye on bloods during the treatment and can easily prescribe something to sort out Calcium levels if needed, I guess the milk might help.

It's only two years but I really cannot remember a drug that you cannot take with milk but I am sure your specialist nurse will explain it. I hope you mum is feeling well and not minding the GCSF injections too much, actually I guess today will be her first ones. My daughter is a student nurse, so she has volunteered to give Stephen his injections. She says it will be good practice but I am not sure how Steve feels about that! He has to have a double dose as this is his second time around.

Andy, I know what you mean about the Hickman being a boon when you are having a lot of infusions etc. Steve has not been having many of late as most of his velcade was sub cut and he did not mind the cannula when he had his cyclophosphamide. He knows he will need one for the SCT and will be glad of it, he just hates having it there. He takes most other things in his stride, even bone marrow biopsies but really loathed that Hickman!

I noticed that many of you going through harvest just now were kept in overnight for the cyclophosphamide, Steve just spent the day in KCL being washed and rinsed and was out about 4.00 pm and on the train home, alone, having insisted that he would not need support, despite offers from me and Carys, our daughter, to be there with him. I just put it down to,'No sense, no feeling'

I hope everything continues to go to plan for everyone and Andy, I hope you see some downward turn soon,

Much love, Mari xx (better stop skiving and get back to work before someone notices!)

[eveParticipant]

Hi Everyone
The procedure working up to a sct differ from hospital to hospital.
Slim was like Steve,s we travelled up from Deal that day and got back at 8pm.
Slim did his own injections,we did stay up in Kemsing for the harvest as it took 2 days,Slim found it tiring he was dosed up with Calcium through a driver,because of feeling sick.
At Kings they do not allow ice or lollies or food to be brought in,because of infection,but other hospitals allow it.
I conformed until the last week,got fed up of going down to kitchen looking for something he fancied only to find ,no one there or it was [I will bring it up]he did not feel like it after an hour,s wait,so bought food in myself.
So my thought are all hospitals are different,and you need to find someone who has had a SCT in the hospital you are going to,plus recently as things change so fast. Eve

[MariParticipant]

HI Eve,

Things must vary from ward to ward, on Davidson the ward sister went down to the shop to buy Steve some ice lollies when he had his melphalan and I took all kinds of food in for him when he was feeling rotten as long as I stayed within the list of suitable foods for someone neutropaenic, crackers and cheese was a favourite, non biological yoghurts, quite hard to come by as most yoghurts are live these days and lovely little jellies with fruit in the from M&S, he liked those but was never very enthusiastic about anything. I was amazed at how well he ate on his first evening home. He demanded pie and chips, something he would never normally eat, and finished the lot!

It's true what they say, myeloma is different for everyone, and the treatment can also be very different for everyone,

Love to everyone and I hope you are all doing well. They have just cancelled our Sports Day because of the bad weather, so everyone is a bit down in the mouth in the school where I work, fingers crossed for some sunshine soon,

Mari xx

[eveParticipant]

Hi Mari
Amazing we are 70 miles down the road,and had nothing but sunshine all day,a bit windy,I watched my daughter sitting in Wimbledon with just one quick shower,It came down at my other daughters nr.Dover in sheets,but did not rain much 9 miles up the road.:-S
I think they do have different polices on different wards,as Slim was in Davidson when he went in,food was better but they had a bigger kitchen,so things like cheese on toast was available,Waddington just had a very small kitchen,and when i asked for iced water was told it was not allowed,I think Slims fluid intake would have been better if this was available.As luke warm drinks are awful.Love Eve

[HelenParticipant]

Dear all
I didn't have cyclophosphamide priming before my stem cell collection, there were no beds available in the region for the drip to be given!! I was not a happy bunny may i tell you, this change of plan really upset me. However they told me that it would not delay my transplant as they dont always do cyclophos priming in our neck of the woods! I had to have double doses of GCSF and the collection went ahead on the planned days. I produced enough cells for 2 transplants in 6 hours, 4 hours the first day and 2 the second. I got terribly calcium deficient and had to chew many calcium tablets but otherwise was ok. We dont all have hickman lines up here either, just arm veins if they can use them.
My first posting to this site was about the recovery time from stem cell collection. I was told to expect fluey bone pain for a few days. In fact I had 16 days of pain and aches due to the high dose of GCSF but after that I had 10 brilliant days before transplant.
Our hospital also doesn't follow a neutropaenic diet or wear masks or anything, and lots of rest is encouraged, so it very different wherever you go.
Anyway where ever you are, good luck over the next few days all you on the collection and SCT route
Love Helen

[VickiParticipant]

Dear all 🙂

We just wanted to say thanks for all of the support, information and guidance. It is so good to know that we are not alone. We've had a couple of wobbles today in terms of worry and anxiety, gone through the do we really need to do SCT thing, and recognising that this is the best option. Our provisional dates are :

Line in 23rd July and overnight stay
25th and 26th Bristol for stem cell collection
6th august those final tests and checks and forms
20th august in for the big one, with return cells something like 23rd!

We have been advised to take in ice lollies, any idea on how many and how many days do I need to take them in for? The nurse said it was to do with melphalan? I did say to Colin that she did not been boxes full of magnums LOL:-)

Colin does have concerns about the line being in for virtually a month before SCT but no option.there is no way I would do the gcsf injections! We are having the nurse if for the first one to see how we get on.

Ali, I hope your mum is doing ok. On the home run now x

Again to all, thanks and will keep you posted

Vicki and Colin x

[HelenParticipant]

Hi Vicki
Colin only needs to suck ice for about an hour max, so I made ice cubes in those bags and took them in a cool bag to go straight into the freezer when we got there. I think I made hundreds of them , I used different flavours from those kids fruit drinks, Ribena, fruit shots, some with very little flavour and lots of them diluted down with water, then I had them in my mouth 1-2 at a time . My mouth was the only bit of me that seemed to function properly of my gastrointestinal tract for the next couple of months! I wish I could have protected more of it:-) We threw away many ice cubes only used about 5 of the packs I made.
I could not bear a fruit lolly now:-P
Love Helen

[tmcParticipant]

Hi Vikki
Will think about you and Colin on 23rd July right through until Aug 23rd
Hope all goes well and a nice long remmission will follow.
Love Teresa.

[MariParticipant]

Dear Vicki and Colin,

Glad to hear it is all underway and you have got all your dates, it all starts to feel so real now and by September it will be all over and hopefully Colin will be on his way back up again towards a good long remission. I promise it is all worthwhile, I know that it's very scary and Colin is going to feel pretty awful for a while, but we had a wonderful year of normality with Steve's remission, even if it was only 14 months, it was still worth it. I hope Colin will get much longer and you are able to enjoy your time together.

Stephen will be getting his melphalan on the same day, 20th August but Kings now do not have a rest day before giving the stem cells back, so he gets those on the Tuesday.

I managed to give Steve the GCSF injections the first time around, it was a bit scary at first but I knew he really did not want to do it himself. I tried to be as quick and efficient as I could so it would not hurt so much. Maybe I was too quick because he did not get a great harvest on his first day. The nurses in the hospital gave him a double dose when he was there and he got loads on the second day. Luckily my daughter is home this time, she is training to be a nurse and she is going to give him all his injections, the first were last night. He has gone to work today although he did complain about feeling a bit 'sluggish' this morning. He has not got a date for his Hickman yet and I am quite pleased as we have a holiday booked from 21st July to 4th August, just after his harvest. I am hoping he will not feel too exhausted. The docs are happy for him to travel and he has some emergency antibiotics to take with him. We are off to south west France, not far from Carcassonne and I cant help feeling that a bit of sun will do him, and me the world of good.

On the ice lollie front, Steve had a couple of orange 'Calipos' when he had his first SCT, a good shape for sucking, and he had very few problems with a sore mouth. He was lucky, the ward sister popped down to the hospital shop to buy them for him!

There are so many of us going through this treatment at the same time, I will be thinking of you all as I travel in and out of the hospital each day, lets hope it goes smoothly for everyone,

Love Mari x

[peggyParticipant]

Hi Vicki, I hope all goes well for Colin over the next few weeks. I'm still keeping my fingers crossed that I'll be
following the same path in a few weeks time….. (last time I saw my consultant a few weeks ago I was prepared to be told that I could go in for the sct and then being on the Myeloma X1 trial I was 'randomised' to have Velcade intravenous treatment first. I decided to stay with the trial and go with the Velcade and am glad that I toook the risk (I have a tendency for multiple drug allergies) as I feel better than I have done for years).

Ali, is your mum taking the antibiotic cyprofloxacin? It,'s an AB that I tolerate and says that you should not take milk. However when I was in hosp one time I drank my normal milky tea and had my usual milky cereal without being told anything to the contrary and without suffering any consequences….. but at home I am a religious follower of instructions

Love to all, Peggy

[Author]

Posts