[faithParticipant]

I had my stem cell transplant 5 years ago which went well. Had my, usual, blood test and consultation with my doctor last week and my protein level has started to rise. I should of asked the doctor what happens now but I didn?t (too worried about parking fees silly really).I am worried that I will have to go through another stem cell transplant. Does anyone have any comments please.

Janet Jordan

[NettieParticipant]

Hi Janet

I am so sorry to read that you were given the news we all dread – but please don't despair! It is quite normal to completely forget to ask 'what now?' because you tend to blank everything when you are sitting in the consultant's office, but now you have had some time to come to terms with the news give the hospital a ring and either speak to the nurse in charge or ask for another appointment to discuss your treatment options. I always take a notebook with all the questions I want to ask then I can jot down the answers to read back later.

I relapsed five years after my first transplant and it felt like my world had collapsed around me but there are so many new drug combinations now that a second transplant may not be the only option. Myeloma is such an individual disease that a treatment that suits one patient may not be the best choice for another. I did have a second SCT and have been in full remission for the past 2½ years and (touch wood!) I am feeling so well now it is sometimes hard to believe I am an MM patient!

Please do stay in touch with this forum and let us know how you are getting on – there are so many caring, helpful 'cyber' friends here who are willing to listen and offer support.

Nettie x

[brochoParticipant]

Hi Janet no wonder you are devastated five years is a long time to be in remission As Nettie said though there are so many new treatments available now and more in the pipeline which look promising Remember your doctors can suggest a treatment but the choice is yours! If you really dont want to go through an sct again they will suggest other treatments for you I was adamant about not having a second sct as the first was pretty bad but when I was on the Myeloma X Trial I wasnt chosen for an sct and I was very disappointed!! I know I am contrary but I would have had the sct as it offers the chance of a long time free from heavy duty drugs Chat to your specialist nurse who will know more about various treatments that could be used Good luck and let us know how you get on Bridget

[PerkymiteParticipant]

Hi Janet, Just wanted to offer my support at this time.

I am a year into my first SCT, and I was told at the start that it might only last 18 months and at 69 I have no chance of a second one, so FIVE years is wonderful. I will have to keep my fingers crossedd 😀 .

I agree with Nettie and Bridget take your time, find out what your options are and then give them a lot of thought before you burn any bridges 🙂

Kindest regards – vasbyte

David

[kevinParticipant]

Hello Janet,

I had my SCT in 2007. My last check up was in November 11. I was told then that after 4 years of remission that my count had slightly risen. Was it a blip, will it drop on its own or would it continue to rise. There was no definate answer. I asked what next and was told they would keep an eye on it and when it got to a certain level I would probaly have the same treatment I had 5 years ago. I was told it could be a year before anything needs doing. I see my Consultant in about 2 weeks after having a blood test yesterday and will find out more then. As it seems to be individualto everyone, as the others have said it is best to take advice from your team as they know you the best and can answer your questions for you.
Best wishes
Kevin

[faithParticipant]

Thanks for all of your replies. I know that I must keep positive. I was thinking of making an appointment with my own GP to talk about how I feel.
I have felt so good up to now!
I will keep you posted.
I do know that I am not the only one out there who has Multiple Myeloma.

Janet

[tomParticipant]

Hi Janet

Sorry you have got a relapse am sure it was a shock but their is many a new thing out on the market today to put you back into remission 😀

As for parking fee's dont you have a Blue Badge ? if not thats one thing I would be getting into it helps a great deal having one of those.

Good Luck and stay strong

Tom "Onwards and Upwards" xxx

[mhnevillParticipant]

Hi Janet

Like everyone else, I am sorry that your remission seems to be fading. One thing about "forgetting" to ask "what next?" is that you aren't being rushed into a new decision but have time to think about the kind of treatment you might prefer.

All best wishes.

Mavis

[faithParticipant]

Hi Tom
I do have a Blue Badge for the car, but the hospital has started to charge parking for everyone even Blue Badge holders.

Janet

[tomParticipant]

Hi Janet

Yes they did that at my hospital Scunthorpe General 🙁 but when I had my SCT I had that in Castle Hill in Hull and that had free parking at the Onc/Hem dept but you had to be on and early app as it soon got full.

As for me I park outside the hospital in a bay that says "30 mins parking no return for two hours" I asked a traffic warden (they hover around the hospital all bloomin day) how long I could park in that bay with a blue badge and she told me as long as I needed to ? so I park in that bay if its free failing that yellow line it free for three hours 😎

Hope your doing Ok.

Love Tom xxxx

[faithParticipant]

Hi Tom

I will have to have a look at parking outside of the hospital. I do know that you get 30 free mins parking but that is never enough time.
Doing OK apart from a stupid tickly cough. Will make an appointment with my GP if it doesn't clear up by after the weekend.

Take care
Janet

[tomParticipant]

Hi Janet

Yes I park outside the hospital on double yellow lines 😀 and i can do that for three hours.

Hope your Cough is soon better I have just got over Flu and that turned into a chest infection so had to have some anti biotics, cleared me up a good un, never felt better for years so lord nknows how long av bin poorly lol.

Ps My Young Bride's (Elaine) motto is now you have MM we dont wait till week end, and do you know she is correct, leave it too long and it gets worse at week ends and every thing is shut 🙂

Keep Fit and Strong Janet

Tom Onwards and Upwards xxx

[ElizellenParticipant]

I am another yellow liner, here! A year or so ago our hospital car park started to charge Blue Badgers but there are still a few spots with double yellows which are fairly near the entrances, so most times we don't have to pay.

[tomParticipant]

Hi Janet

How are you doing? hope the cough is better?

Hi Eliz

We ought to start up a "Yellow Liner" group ha ha. but to be honest they (the hospital) should have places where folk with the blue badge can have free parking.

Tom "Onwards and upwards" xx

[faithParticipant]

Hi Eliz

They have only started to charge for blue badge holders, so I don't know where the yellow lines are as yet. If only, I could go to my local hospital could catch a bus then. Not as easy as that though is it?
Keep yellow lines going!!!

Janet

[Author]

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