[MikejanulewiczParticipant]

Hi Chrissy

I don’t reply very often, but I do look!!

Myeloma is very scary when you first get it, and remains so, but I do think it is viewed as a treatable and controllable (but not curable as yet ) chronic illness.

Do not panick about the timescale, it does seem forever, but it’s ok.
However start shouting loud if you get increasing pain though.

I am truly appalled by your Gp, you must complain formally if you feel able. Not only do you deserve better, and an apology, but the Gp needs to learn about myeloma. (I was a gp for 20 years). Do it if you can.

Prof cook is fantastic, I was diagnosed in Harrogate 4 years ago by an ignorant consultant with no manners, so yes, I complained and voted with my feet and transferred to Jimmys, the best hospital in the world!!! Long waiting times in busy clinics, but so what, it really is a centre of excellence. Your body, your illness, your choice.

Ask any advice from this forum, there is a huge knowledge out there. Try to avoid Google. Ring the nurse specialists wish this website, they are great.

My snapshot is diagnosed 4 years ago following worsening back pain (my go misdiagnosed but I pestered for a scan) showed multiple vertebral fractures and skull lesions. Had 6 month tablet chemo then stem transplant, giving complete remission and perfect health till 7 months ago, now back on chemo again, steroid day today so I can’t sleep!!

Chrissy, it will be tough and you will have lots of decisions to make, but don’t make that journey alone. Good look with everything and honestly the your timescale is ok, again so long as there is no increasing bone pain, no extra damage will be being done during your wait.

Ask away and Good luck with everything.

Mike

[MikejanulewiczParticipant]

A very merry Xmas to you both.

You really have done v well. An sct is truly major, don’t underestimate the strength this will have taken. I hope that your day 100 bone marrows are clear, and I hope you both have as good a remission as myself, and I hope you both beat my 36 months.

Take things easy, and have a great 2016.

Regards

Mike

[MikejanulewiczParticipant]

You 2 guys doing real well.
Sounds like all the usual side effects and ups and downs of the poison and saving life!

I really like the sound (not the look probably) of man size nappies, I was never offered these but could have done with them on a couple of occasions.

How many days post sct now???, I was out at +19, but did have a bit of an infect in last few days.

I lost 20kg in total, from 82 to 62, took a while for food to taste nice again, now I love food like there’s no tomorrow!!!……88kg now!!!

Good luck with next few days guys. I bet you’re both really bored now.

Mike

[MikejanulewiczParticipant]

Hi Dino and Louishenry,

I think you two are going to be in a race to be the first out of hospital !
You’re both now on “day 1” ie first day after stem cells going back in.
I was hugging the toilet very hard at this point, I always react to high dose chemicals, I remember that high dose Pernod was particularly bad.
Dino I think your doing really well to be even eating cornflakes and apricots.
The visiting times are usually totally relaxed and even if there is a policy, it never seemed to be enforced.

Keep going guys and keep in mind the good times ahead of you.

Mike

[MikejanulewiczParticipant]

Hi Dino,
Yep, keeping on top of the vomiting and nausea can take a bit of trial and error.
I had subcutaneous infusion of nozinan which worked real well, but did make me amazingly sleepy (a real bonus) . Don’t be afraid of asking for stronger and stronger anti nauseates as the quicker it settles the better.

It’s great that you are linked to the Internet, St James in Leeds is a fantastic modern purpose built cancer treatment unit, BUT, no wireless signal, and no decent mobile signal !
Nightmare!

I wish I could give you some good advice……all I can say is to remember the reason you’re doing this is to extent your quality life until relapse, hopefully many many years.

Hope you’re getting a few visitors to pass the time of day.
Regards,
Mike

[MikejanulewiczParticipant]

I remember it well!
Hope all goes smoothly for you.
Keep posting.

I had sct 3 years ago and just relapsing.
BUT have had a fantastic last 2 years.

Keep smiling.

[MikejanulewiczParticipant]

Hi,

It is very rare that I come onto this site however I do like to read the posts.

I am in remission from mm and will be on lifelong monthly zometa.

I strongly believe that your dentist has been negligent here. They are professionally bound to know of a persons full medical history prior to any dental treatment. Osteonecrosis is not rare in someone on zometa having an extraction, it is a recognised complication. This is just not right., I would be fuming. I can only hope and pray that this will heal under the expert care of the maxilofacial surgeons.

Mike

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