[mervyn53Participant]

I am 65 and due to go in for SCT on Tuesday in Cambridge. I had 3 crushed vertebrae from MM and paraproteins at 74 and was obviously immobile. After 6 months and 6 cycles of velcade I am now ready to have a line put in/on and have the SCT. I suspect it is pretty brutal since I have been told that there are those that just stay in bed and those who get dressed and have a shower and it is best to be the latter.

What that means to me is that you are hit so hard that all you can do is one or the other.

Anyway, my reason for writing is that I have not found a daily diary of how someone feels or what exactly happens during the SCT so, in order to keep myself occupied, I am thinking of doing this.

My question is: is this likely to be of any interest or is it more likely to be self-indulgent claptrap that no one has any interest in.

Let me know. Be as brutal as you like !

Mervyn

 

[rebeccaRParticipant]

Hi Mervin, good luck with it all – its not pleasant but doable – I was the ones who stayed in bed all the time in pyjamas moving only to shower – I was not whacked out or tired its just that any movement made me sick. I hated it when they made me get out of bed for them to make it as I would spend the whole time being sick. Everyone is different and that was just me. I soon recovered and am enjoying remission – like you will be. There are lots of people who gain info/comfort from this site who don’t ever post and there are always many preparing for SCT who will want to read as much as they can about everyones experiences so I think its a fantastic idea to share this time. It will be so helpful to many and perhaps will help you as you will know when you have turned the corner and on the homeward stretch. It is so boring being stuck there so a daily bulletin may help pass the time as well as keeping family and others informed. Good luck. Rebecca

[kevinParticipant]

Hello Mervyn,

Best wishes for your upcoming SCT. I would echo what Rebecca has said. I have had two SCT now one in 2007 and the second in 2012. As has been said everyone is different and all I could add to that is to say that both my SCTs were different experiences. I had excellent treatment and care by all the staff on both occasions but the common factor was the boredom so would suggest anything you can do to combat this would help. Each SCT gave me full remission.
Best Wishes
Kevin

[kevinParticipant]

Hello Mervyn,

Sorry the last sentence should have said ‘Each course of CTD and SCT gave me full remission.’

Best Wishes
Kevin

[davidainsdaleParticipant]

Hello Mervyn

Good luck with your stem cell transplant.

I am now 15 months on from mine which I had in Liverpool and am doing well. I took in a radio with headphones,books and crosswords which kept me busy. You will find that the nursing and support staff are in every couple of hours day and night to keep an eye on things so you won’t get bored. I found that it was very frustrating being hooked up constantly to the drip line trolley especially when showering and going to the loo in a hurry, the wheels always seemed to be pointing the wrong way! I was up and dressed every day but on a couple of days half way through you are likely to feel pretty tired.

The advice to suck ice lollies when having the melphalan worked well for me. Try and do everything you are told by the nursing staff since they know best, particularly where eating and drinking are concerned, often easier said than done. Contrary to what the papers often say I found the food and care to be first class under the circumstances. I was lucky in having a relatively straightforward time and was back home after 16 days – expect to feel tired for a few months afterwards. I was up and about soon afterwards at home but found that the mind was quite often more willing than the body.

Hope this helps. Good luck

David

[mervyn53Participant]

Dear All

 

Many thanks for these words of advice. I will see how I feel when I get in there.

Hope all goes well for you guys.

Mervyn

[hcp1Participant]

Hi Mervyn

I am on my fourth cycle of velcade, dex and thalidomide and due to have a SCT October time so I would be very interested to read of your experiences. I must admit it’s the part of the treatment that I am nervous about.

Good luck for Tuesday. I will be thinking of you.

Helen

 

[mervyn53Participant]

OK. Thanks for this. Will write it up daily, if I can.

M

 

[pc452Participant]

Hi Mervyn,

I came home from my SCT just a week ago and, apart from feeling rather queasy during the night after the Melphalan, I had no significant side effects at all! I guess I was really lucky. One of the consultants said some people just sail through the whole thing so I do hope you’ll be one of them. But if not, you’ll be very well taken care of. It is important to tell the staff if you are experiencing any problems, day or night. You’ll be provided with an alarm call buzzer. Do use it. They really don’t mind.

My age is seventy, by the way, but I’m a fairly active person, and that may have helped, I’m told.

I would certainly endorse David’s comment about sucking ice before, during and after the Melphalan infusion. My “popcicles” lost their appeal after the sixth though, so I then turned to plain ice cubes. A patient I met at the MUK Information Day in June warned me this might happen, so I made sure I took some ice cubes with me too. Do try to make sure they are quite small though. When mine were served up,  I discovered they were the size of plums (bought in Sainsbury’s) – quite a mouthful! They did seem to work though; my mouth has never bothered me at all.

They started me in a single cubicle, which was good at night, but rather lonely during the day. A few days after I had my stem cells infused I was transferred into a four bedded bay, which was much more sociable. It was possibly just as well I was on my own for a while as, I’m told, I reeked of tinned tomatoes for a few days after I had my stem cells back! It’s due to the preservative they put in with the stem cells. Fortunately, I couldn’t smell it myself, and by the time I was moved it had gone!

The care I had was excellent. All the staff, from consultant to hospital porter, were very friendly, extremely patient and very competent. The nurses are in and out all the time and we had a good laugh with them at times. That was a big help in keeping our spirits up as boredom can be an issue. It can be difficult to settle to doing anything at times.

Anyway, the best of luck, and hope it all goes smoothly for you.

Best wishes

Peter

 

[mervyn53Participant]

Day 1 SCT

A long day if you wake up early as I do. There were the usual bloods and so on, but then you have to wait for results, the doctor to call in and the chemo from the pharmacy. We got started about 1400 hours with about an hours worth of liquid being pumped in so as to pump out quickly.

Then we had the chemo and an hour of sucking ice cubes. I feared it would be longer. I saw someone had to suck for 6 hours ! That would be an ordeal.

After the chemo I am on 3 bags of drips at 6 hours a bag so an overnighter and 18 hours in all. Stem cells start tomorrow. Hasta manana.

Mervyn

 

 

[hcp1Participant]

Hi Mervyn

Hope all going as well as can be expected. Thinking of you.

Helen

[mervyn53Participant]

Hi helen

Now on day 3 and feeling rough and very weak. Don’t want to eat anything. The thing to remember is that they give you the melphalan on day 1 then the stem cells on day 2 with 18 hour drip. On day 3 they leave you alone. It is in your body so the fight can commence. The doctor says it will be like this for 4-5 days.

Couldn’t write yesterday because of poor connectivity.

 

Mervyn

 

[hcp1Participant]

Hi Mervyn

Please don’t feel you have to write each day. Save your strength for getting better. Catch up when you can.

It all sounds pretty rough but I guess we are warned it is likely to be that way. Although it sounds as if everyone’s response is unique to them.

Thanks for taking the time

Helen

[sukieParticipant]

Hi Mervyn,

I hope you are feeling OK today and coping. After having put off going through the SCT process for the past 7 years, I am about to embark on it in the next few months. I have had various treatments during that time: Velcade, Revlimid, Velcade again and have now run out of options so I am taking the plunge. As I live on my own, it has been a big decision so I welcome any tips that you, or anyone else, can give me to help me through the process.

I am about to start on a course of DHAP (normally used for lymphoma patients, apparently, but also being used for myeloma) to reduce the amount of cancer cells. Once they are down then the SCT will take place. Not looking forward to it but needs must, as they say.

Best of luck with your treatment.

Sue

[davidainsdaleParticipant]

Hi Mervyn

Hope you are feeling better soon and coping. I don’t recall anyone say that it is easy, but everyone’s experience seems to be different.

I think patience and common sense are important as well as following the advice of the doctors and nurses. I kept a diary when I was in and have several entires of ` pretty tired’ between days 3 and 10. My neutrophils started to come back strongly on day 10 and was home on Day 16. Expect to feel tired for quite a while afterwards.

It can be mentally exhausting as well as physically demanding, so try and think of some nice things to do when you are well again.

All the best

David

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