[kpParticipant]

I am over 107 post SCT, I continue to use hand gel all the time. Carry it in my handbag and apply after Supermarket etc. Nurses said to take temperature at least twice a day. The dietary info I was given was quite comprehensive, no mayonnaise, runny eggs, reheated food, shellfish etc. A bit like the diet for pregnancy I thought.
Other advice was no public transport, avoid crowds of people in enclosed spaces and anyone who has been in contact with infection, or has a cold etc has to stay away.  It can be a bit restrictive, but in my case worth it as so far I have not caught anything.

The nurses even said if anyone has traveled on a plane they should wait 72 hours before coming to see me, just in case.

I feel well for the first time in a year and was told this week no free light chains so it is worth it.

Wishing you well

Karen

[kpParticipant]

Glad to hear you have a date for admission.  Good luck with the SCT. I did the sucking of ice cubes etc whilst Melphalan was administered. The nurse told me that you have to keep mucus membranes cold to reduce blood flow not just during administration but for 6 hours afterwards.

Best wishes Karen

[kpParticipant]

Hi Mike, I am 39 days post stem cell transplant.  I am doing well I think from the feedback at transplant clinic but I guess the BMB after 100 days will tell more.

I just wanted to say sorry to hear that your protien rising but although SCT is challenging,  particularly on the GI tract,  it is very doable. I found the time in isolation was ok because you do need to rest and the nurses, doctors etc are in and out to monitor you so the days sort of drifted past. Just take a few things in you like to do to pass the time. Try to eat a little often even though appetite tends to dissappear.  I wish you well on this next step in your journey.

Stay strong

Karen

 

[kpParticipant]

Thanks for this post Graeme, I am also experiencing a very noisy GI tract post SCT (I suffered severe mucositis) and Jill’s reply is really helpful.

Hope you are OK now.

Best wishes

Karen

[kpParticipant]

Hi, I was on the VTD (Velcade, Thalidomide and Dex) and I think it was by the third cycle I was experiencing symptoms of peripheral neuropathy, particularly in my legs and feet. The Consultant reduced the dose of Thalidomide by 50% for the last three cycles so the symptoms did not get any worse.

I completed the six cycles in June and although I have had some gradual improvement the PN is still evident. A nurse said to me I could see gradual reduction of the symptoms up to a year but I think that like MM, PN is different for each individual.
I too would ring the info line, they are great.
Best wishes
Karen

[kpParticipant]

Hi All,

I was discharged on Friday (three days short of a month in hospital) because just as they were saying I could go home I got a chest infection which was treated with IV antibiotics and added a week to my stay.

It was difficult at times, particularly because I got severe mucositis despite sucking ice pops and ice lollies before, during and after the Melphalan. Apparently you need to keep your mucosa cold for at least six hours to reduce the blood flow and limit the effects of the Melphalan on the GI tract.  But I would say it is doable and the advice to get up every day, have a shower etc was good and that was what I did, even if I then went straight back to bed.

I am looking forward now to gradually regaining my strength and planning for a nice break in warmer climes after Christmas and when I will have started to have my immunisations ( I think I can start them from day 100 post transplant).

Good luck to all

Karen

[kpParticipant]

Hi Susie,

I have just come out of hospital after a stem cell transplant. was a tough month but doable and now I have a couple of months recovery to get through. can’t believe how tired I am.

I am sorry to hear that your PP’s are slowly rising after 6 months remission. I agree with the previous poster, rant and rave as much as you need to and I wish you well with whatever treatment plan you agree with the Haematology team looking after you. One of the hardest things to get my head around is that I will be fighting this MM for the rest of my life but there is some consolation knowing it is a marathon and not a sprint.

Take care of yourself

Karen

[kpParticipant]

Hi Peter,

So much good advice and helpful information in the previous posts.
I am going in this week for a Stem Cell Transplant and hoping for a longer and deeper remission as a result. The Doctors do have to explain in great depth the potential outcomes for each step of this unwelcome journey we all have to take with a MM diagnosis. Which I have to say made the stem cell a challenging consultation to get through and very upsetting but necessary. I guess we all have to know what we are dealing with and make informed choices in partnership with the Haematology Team. Doesn’t have to be a pessimistic experience though because fighting the war against MM is a marathon and not a sprint (I borrowed those words from another forum member).
There is so much helpful information on the forum. Take a look at the thread in newcomers “How confusing is this journey” where I got so much helpful support/advice and information when I was first diagnosed.
I have also used the Myeloma UK helpline and would encourage you to give them a ring for a chat. Don’t underestimate the emotional and psychological impact of being diagnosed with a cancer and be kind to yourself. It is a tough time as you adjust to a whole new way of being.

Best wishes Karen

[kpParticipant]

Hi Mervyn, thanks for the link, I have had stem cells harvested, have a wig ready and waiting, and am waiting for a date to go in for transplant so am absorbing information from as many sources as possible. I feel anxious and apprehensive but I know I will get through it. The carrot is a deeper and longer lasting remission.

Keep well

Karen

[kpParticipant]

Hi Mike, sorry to hear that Thalidomide stopped working and hope VCD working for you.  The steroids do cause so many problems.  Hoping next blood results are positive for you.
You have been an inspiration and your helpful, informative posts gave me, and I suspect many others, invaluable support at a time when I felt overwhelmed by the enormity of my diagnosis.

Up past my bedtime waiting for the time to take the second dose of Mesna as I am currently on the schedule for stem cell mobilisation.

Kind regards

Karen

 

[kpParticipant]

Hi Susie,

I find I feel generally unwell after the Zometa infusion for a few days and it also upsets my digestive tract. This last cycle the Nurse let it run through in five minutes and two weeks later I am still not right. Makes me wonder if it is worth it?
Cheers

Karen

[kpParticipant]

Hi All,
Just about to start 6th cycle of VTD and have tolerated treatment reasonably well although the side effects create their own challenges. I have had a good response and have been referred for consideration for a SCT.
So next big hurdle we have to face is the decision on next steps for treatment. Other people posting on the forum seem to have had very variable experiences/outcomes from SCT.
I read an article recently about “chemo brain” and for sure I have had problems with concentration. I found it has interfered with my ability to complete pieces of work ( everything takes much longer to finish) and I haven’t been driving.
Best wishes
Karen

[kpParticipant]

Well folks, I am in the middle of the second cycle of VTD as the MM went active just before Christmas. Coping with the treatment fairly well although it has been an anxious couple of months. I have a new full time job waiting in NHS clinics!!!

I don’t visit the site often at the moment but do hope everyone is doing OK.

Best wishes

Karen

[kpParticipant]

Oh dear Mike, the most likely explanation is my misunderstanding and misinterpretation of what was actually said to me…I still feel like a rabbit in the headlights and so dis-empowered when I go in for a monitoring appt so probably mis heard.

Thanks for your response, it is much appreciated.

Kind regards

Karen

[kpParticipant]

“so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

I think we should all live our lives to the full and enjoy every day.

I try to ignore the worm in my head that insists on reminding me of my diagnosis every day as soon as I wake up and trys to unsettle any feeling of well being I achieve  being normal with my family and friends (not easy though is it?).

As Spock would say “live long and prosper”

Karen

• This reply was modified 10 years ago by  kp.
• This reply was modified 10 years ago by  kp.

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