[kaychappersParticipant]

Hi everyone. Just wanted to let you know I saw my consultant Monday and it all looked grim. She said my SCT was a disappointment. My last 3 PP results were 16, 18 and 22. Good news was she believed my bone/joint pain was rheumatoid arthritis and she wanted to get that under control as I am in so much pain, but she did not have the results of the CT/PET scan back. They did more blood tests On Tuesday evening she telephoned me to say scans showed no sign of bone disease and it is arthritis (never been so glad to have athritis). PP had risen slightly to 23 but she is not worried about them. They started treatment last Feb when I had anaemia and my HB has consistently risen since SCT so unless my HB starts to go down they are putting me on no treatment not even maintenance. I go back in two weeks just to confirm everything, but I am so pleased. Thank you all once again for being there Kay x

[tomParticipant]

Hi Kay

What a roller coaster for you 🙁 and isn't it great to be told you have rheumatoid arthritis 😀 well it is better than bloomin MM in our bones 😎 and Kay if your pleased am pleased good luck 😀

Love Tom "Onwards and Upwards" xxx

[kaychappersParticipant]

Oh well saw Rheumatologist. He does not think it is arthritis. Did loads of blood tests. Maybe gout!!!!! oh great on top of MM I have pain in every joint of my body now. Prescribed co codomol for pain until blood tests back. Dont want me to have anti inflamatories because may cause kidney problems. Saw that Bonefos can cause joint pain. Maybe that. Head is spinning. I always seem to be waiting for results. Kay x

[tomParticipant]

Hi Kay

Aww Bless If its not one thing its another 🙁 Gout is pretty painful or so am told? heres me thinking you could only get gout in your Big Toe :-S yep am a numpty of the first order:-/

Hope The Tabs work untill all bloods are checked.

Love and cyber hugs

Tom xxxx

[CarolBradley1Participant]

Hi – hope the meds are helping with the bone pain. Regarding the tingling feet etc – I have had this for about a year since I have had all the Chemo – lots and lots including Velcade and Revlimid. I describe it as having an electric current though the soles of my feet and although irritating can´t say mine is too bad as the back and general bone pain is far worse. I was told that your SCT hasn´t necessarily failed if you get a few disappointing results in the early days as everything takes time to settle down and many of the drugs used have a long "shelf life" so take a while to work completely.
Anyway, best of luck and take care of yourself.
Carol xxx

[SueMParticipant]

Hi Kay,
Sorry SCT hasnt been as successful as hoped and you have the bone pain.

After trying numerous analgesic I started matrifen patches 12.5mcg/hour(fentanyl)
I had tried to get a longer lasting analgisia to maintain the level in blood and be more consistant.
I also managed to have a tooth absess the same day I started it ! so have had lots of oromorph in between which numbed me not the absess pain but…. the bone pain has been much improved finally ,my pain is ribs,femurs upper arms,I also have rheumatoid arthritis so please pm me if you want to discuss that not all people have a positive rheumatid factor or esr but still have an inflammatory type arthritis

I am due to have SCT sometime after finishing cybor d it will be ? march april and would love to know if any sct drug protocol is adding to the early failures?
Would you mind saying the drugs you had for sct including day given and dosage of any chemo therapy ones,also did you have any placemytomas or myeloma bone lesions still when you under went SCT?

If any other SCTERS want to start a topic and give their input i would be most greatful 🙂
I'm on my first relapse and delayed SCT till this time and like all of us want the best results i can manage from my sct even if it means trying to have further treatment at end of cybord which will be hard for me to persuade with my new consultant i think 🙁 my lovely old one retired

pp level pre asct would be handy and length of time from end of induction till actual sct and anything else that my tired brain has missed .

Good luck kay ,you may find your pp remains at 23 ish and stabilises I so hope so and wishing you comfort 🙂

best wishes
Sue (yes its a dex day can u tell 🙂 )

[daisychainParticipant]

Hi Kay

I've been reading through your blog and really interested to know what happened after your SCT and the revlimid.

Take care
Dawn:-)

[kaychappersParticipant]

Hi Dawn
Not been on site for a long time, so thank you for bringing me back. Life goes on Im pleased to say. My PP fluctuate between 18 and 22. I went back to Barts on Monday and had what I hope now is my yearly visit. I have blood tests once a month at my local hospital and hope that it will go to two months now. My consultant said she will not worry about my PP numbers as it was anaemia that brought about the treatment. I had a scare a few months ago when it looked like my HB was dropping quite quickly, but it was my body giving me a blip thank goodness. I had my SCT when my PPs were 34. I still get joint pain and tenderness, but I believe that I now have to live with that as a consequence of the treatment. How are you? Regards Kay x

[mhnevillParticipant]

Hi Kate

Glad to hear you are still battling on wothout needing any more treatment.
Good to hear from you again.

Love,

Mavis x

[daisychainParticipant]

Hi Kay

I'm really pleased to hear you're doing so well…:-) I could feel the anxiety in your original post and was really hoping things got better for you… (PS i've been there!!)

I'm doing fine rolling with the punches as you'll note from my profile!!!

It's my mind that plays havoc with me so I always try a get some form of councelling/support tools to keep me focused with the positive in my life now and to stop my mind wondering – to a bit of a scary place!!!.

Don't know if you've heard about this web site http://www.patientpower.info/health-topic/multiple-myeloma
it has podcasts with guest speakers Professors, Doctors who talk about treatment now and in the future – helps keep my mind positive.

This web site also holds interviews with professors/doctors across the world following conferences they attend http://ecancer.org/search – again helps keep my mind focused.

You may be interested in the following that I'm now looking into.

Mindfulness – its sort of about living and thinking in the present try this link to begin with http://www.cancernetwork.com/nurses/content/article/10165/1698208

EMDR this has been recommended by my company's Occ Health therapist http://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing
http://candacepert.com/

Someone has recommended I read this book by Candace Pert Molecules of Emotion – http://candacepert.com/

I find if I can keep my mind in order – I really can live a good life with my kids, family and friends and deal with the challenges this disease brings me.

I also think of this statement often when things get tough. "You can't stop the waves but you can learn to surf" Sri Swami Satchitananda

http://www.swamisatchidananda.org/docs2/home.htm

I can't change the fact I've got myeloma but if I can learn surf the waves when it comes back – ready for the next treatment to come along…:-)

good luck

Dawn x

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