[nickyx1Participant]

Thanks charlie I’ll give it my best shot. All the best with your chemo x I’ll let you know how it goes.

nicky x

[mattkboParticipant]

Hi Nicky,

Just read this and looks like you are going through SCT now? Anyway wanted to say I hope all is going well, you will get through it. Just take it one day at a time.

Hi Charlie,

Good luck with your Chemotherapy and future SCT. I had 6 rounds of CDT and then SCT in 2013, you’re not alone.

Matt

 

[nickyx1Participant]

Hi matt

thanks for your kind message.  Things have all gone well but am suffering with sickness at the moment.

Feeling slightly better today. Hope all is well for you x

Nicky

 

[charlie67Participant]

Hi Nicky

sorry you’re feeling so sick. You’ve been in my thoughts.

Charlie x

[charlie67Participant]

Hi Matt

thanks for your kind words. Can you let me know what the process is for the SCT? Do you get admitted into hosp and then stay there until it’s all done, or is it done in stages?

Charlie

[bev2504Participant]

Hi All

I started CTD on 15th January and I can say it’s been a journey. I convinced myself it was going to be easier than I imagined and I was going to continue working throughout….well the best laid plans!

I came to the end of cycle 1 and was unable to start cycle 2 because my neutrophil count was to low to continue with chemo, so I was given a break for a week. That was on the Thursday, by the following Tuesday I was an emergency admission to hospital with what turned out to be an allergic reaction to medication, at the time of admission, Drs were unsure as to which medication it could be. I was in for over a week, just trying to work through the effects of the allergic reaction, which resulted in me having an all over body rash (very itchy), my face and neck were extremely swollen, my right eye completely swollen shut at one point and a raging temperature. They ruled out most of the meds and trialled me on the lowest dose of Thalidomide once I was discharged, and the symptoms started again shortly after, which confirmed Thalidomide as the culprit. So now I’m facing a new medication regime which will be discussed and decided this week. So back to the drawing board! Very disappointing, but trying to remain positive!

I hope you all have or have had an easier time, it’s a difficult road without the complications, I just tell myself it can only get better from here!

Beverley

[tonyfParticipant]

Evening Beverly, I had exactly the same reaction as you have had, it turned out to be allupurinol that was causing my problems. So I was taken off it.
Regards
Tony F

[amandaParticipant]

Hi Beverly , I have just started CDT working towards having SCT in around end of April.  I don’t know what the procedure is if you start harvesting cells and stay in hospital or if you do some kind of injection  for yourself at home.  I know that the blood count starts coming down to take us in to anemia which at that point you feel very poorly.  I am hoping that when it gets that point that have me in to do the SCT.  after which I believe that you stay in quarantine until immunity is back up and well enough to go home.   This is just my impression of what is to happen but I am not totally sure.  Hope that somebody can answer yours and my question as to when you go into hospital and what happens.  good luck to you when you have your SCT. Regards, Amanda

[mattkboParticipant]

Hi Charlie,

I completed 6 x  3 week cycles of CDT (chemo) at the end of Sept ’13, I started in mid May.

In mid October I went into hospital for 2 days, during those 2 days I had a Hickman Line fitted and then 2 x 5hr sessions of Etopiside (high dose chemo).

On the next day I started to have one daily injection (at home) for ten days for Stem Cell Mobilisation. On the eleventh day I went to hospital to have my stem cells harvested, this process can be spread over 1-3 days until the correct amount of cells are obtained, I was lucky to only have one day there.

Nothing happened then for two weeks until I returned to hospital for one day of health checks to make sure I was fit enough for the transplant, heart & lungs etc, as all was positive I then just had to wait for a bed in the ward.

Two weeks later I received a call on a Thursday lunch time that a bed was free, we packed my bag and was admitted that evening. The next day (Friday) I was given Melphalan (high dose chemo). Saturday and Sunday I just rested and then on the Monday morning I received my Stem Cells back. The next two weeks I stayed in hospital just getting fit enough to return home.

After discharge I returned for a check up a week later and then again two, weeks after that. As things were going ok I then returned monthly for check ups.

Hope this helps, happy to answer any questions.

Matt

 

 

[mattkboParticipant]

Hi Nicky,

Really good to your SCT is going well, I presume you are still in hospital. Sorry to hear you are feeling sick, I did too, it did get easier as the days went on.

This may seem weird to post but once I recovered from neutopenia my wife made me banana and sultana flapjacks, I find they settle my stomache and give me a little energy. Just oats, olive oil, banana and sultanas, mixed up and baked for 15 mins. (Really hoping reading this does not make you feel unwell)

Anyway take care, hope you get home soon.

Matt

[amandaParticipant]

Hi Matt , would like to thank you for your information on the SCT it was very informative, sounds like you found it ok . You put it just as it is so I feel quite relaxed about it. Did you loose your hair etc on the last chemo ? and were you very sick ?  Good luck to you in the future.  regards Amanda

[mattkboParticipant]

Hi Amanda,

Thanks, you’re welcome. I started to loose my hair about 2 weeks after the Etopiside, which was my first high dose Chemo at the end of October. I noticed it coming out on a Friday and by the Monday it had gone. My hair started to grow back in about the third week of Jan.

I was nauseous from the Etopiside but no more really than the CDT and it started to subside before the SCT. The Melphalan (SCT) also made me nauseous, quite a lot to begin with but it it did get better as the days went by but hung around in a mild form for a few weeks. I lost my appetite during the SCT due to nausea but when I became neutropenic in my second week I was put on a special irradiated diet which unfortunatly was not too appetising to me either so it compounded the situation. However you must eat as you need to build your strength up as much as possible.

I was given some advice prior to my SCT by my Wife’s friend who also had the transplant and I think it is invaluable. Clean your teeth after every intake of food, at least four times a day and use the mouthwash afterwards, you’ll most probably be given some (same as Corsodyl). This is not easy to do when you feel rough but it will reduce the risk of mouth ulcers which can also hinder your intake of food and increase risk of infection.

You’ll have a great medical team around to care for you, take each day at a time, some are easy, some aren’t but you’ll soon be through it and on your way to enjoying the summer.

Hope this helps, happy to answer anything else.

Matt

[bev2504Participant]

Hi Tony

 

Thank you for the response. It’s very disheartening, I should have been part way through cycle 3 by now, instead it’s almost back to the beginning. Hopefully this week’s appointment will prove more positive.

Beverley

 

 

[bev2504Participant]

Hi Amanda,

I’m not sure of the process of SCT either, but the information from Matt is useful. I’m just hoping my process of the next chemo cycle is a lot smoother from here.

 

Beverley

• This reply was modified 9 years, 2 months ago by  bev2504.
• This reply was modified 9 years, 2 months ago by  bev2504.

[amandaParticipant]

H I  Matt

Thank you so much for your reply ,  it has really helped to put things in to prospective.  I am fully aware that there are going to be problems along the way and I know that I am ready to handle it all , but it is a great help to know roughly what is in store.  I hope that Beverley has been able to read your reply too and has got some comfort from it too.  The unknown is the worst thing to handle .  I wish you lots of luck for your future and hope that your gain a good remission. This disease is very hard to get your head round as it is so difficult and different for everyone.  regards Amanda.

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