[annieParticipant]

HI MY NAME IS ANN,I WAS DIAGNOSED WITH SMOLDERING MYELOMA FOUR YEARS AGO,I RECIEVED TREATMENT MONTHLY WITH PAMIDRONATE FOR TWO YEARS, THEN IT WAS STOPPED.TWELVE MONTHS AGO I STARTED GETTING SHOOTINPAINS IN MY RIGHT FEMUR,WAS SENT FOR AN M R I SCAN AND A SMALL TUMOUR WAS FOUND IN MY NECK OF FEMUR,ONE THING MY BLOODS WERE OKAY. I WAS REFERRED TO A RADIOLOGIST CONSULTANT AND UNDERWENT GAMMA RADIATION TREATMENT( SIX DOSES), I AM BEING MONITORED ON A THREE MONTHLY BASIS VIA BLOODTESTS,THE SHOOTING PAINS IN MY FEMUR CEASED AFTER THE RADIATION,THAT WAS LAST JULY,THE LAST COUPLE OF MONTHS I STARTED GETTING PAINS ONCE AGAIN AND TENDERNESS IN MY ILLIAC CREST AND GREATER TROCHANTER,HAD ANOTHER M R I SCAN, BUT THIS WAS FOUND THAT THE TUMOUR HAD GOTTEN SMALLER, BUT I SEEM TO BE HAVING MORE PROBLEMS ESPECIALLY WHEN WALKING OR STANDING FOR TO LONG,MY CONSUTANT SAYS MY BLOODS ARE STILL OKAY,I WENT TO SEE THE RADIOLOIST CON WHO IS GOING TO REFER ME TO A ORTHOPAEDIC SUGEON,HAS THIS HAPPENED TO ANYONE ELSE………….

[michelleakitt29Participant]

Hi Ann
I am sorry that you are having problems, however, I think you really need to wait for your appointment with the orthopeadic surgeon, to find out what is really going on, it is really common to have problems around the hip and pelvic area, My Mums main problem is in her back. The main areas for bone deterioration is back, ribs, pelvis and skull, although as we all know myeloma affects every bone in your body really. It seems that you are being looked after and that when problems arise these are being dealt with straight away. I hope that you are not waiting too long for your appointment with the surgeon. Take positives that your bloods are ok, which hopefully means that the myeloma is not active for you yet. I wish you luck and keep us informed how you get on.
with love michelle x

[annieParticipant]

HI Michelle
Thank for your reply, i hoping that my appt may come through this week,although i know orthopaedic are usually slower giving you an appt,so i will just have to be patient,I do think i have been very lucky,having a good haematologist and radiotherapist. It was just unfortunate that i was diagnosed just after had retired from nursing, but thats life,I had only ever come accross one patient with myeloma and that was in the later stages of the disease,Hope your mum is responding to treatment send her my reguards.I am now looking into joining a support group in my area. I will keep in touch now i have found this site.Thank once again ANN

[michelleakitt29Participant]

Hi Annie
Mum is doing quite well at the moment, she too was diagnosed just over a year after she retired, she is only 65 now. She is responding very well to Revlimid and her proteins are down to 2 that is the lowest it has ever been. The consultant said that when she was diagnosed it was the worst case of bone damage that he has ever seen on diagnosis, she is still in lots of pain but doin great, She has handled the whole thing by burying her head in the sand, but it works for her.
I am sure that you wont be waiting too long for the orthopods to get back to you. How old are you if you dont mind me asking? I work within a palliative care setting and would say that we have had 3 patients with this disease in the last 18 months. what type of nursing did you do? I sort of assumed that you had medical background with the technical terminology that you was using. By the way i found a lot of help at the support groups and met lovely, friendly and helpful people there,
with love michelle x

[PerkymiteParticipant]

Hi Annie, Welcome(?) to our little group.

I cannot help you specifically but thought I would just say hallo. You will find the forum very helpful and there are some great people on it. Look forward to your postings.

Kindest regards
David

[tomParticipant]

Hi Annie

And a warm Welcome from Iccle ole me 😀
Am sorry you had to join this forum but am sure you will find out its the best their is 😎 ,the help and support you get from these great folk is second to none 😎

Good Luck in your treatment.

Love

Tom "Onwards and Upwards" xxx

[brochoParticipant]

Hi Ann wwelcome although I am sorry you are having to join us . I agree with Michelles advice and hopefully you wont wait too long Rrecently I was going to be referred to an orthapaedic surgeon to see if they could help with the pain in my back Apparently there are minute fractures in myeloma that can be the cause of pain but they are hard to see so surgeons use the CAT scans rather than mri. In my case radiotherapy was the answer as there was a substantial tumour on my spine , but 5 sessions of rt have got rid of the pain for most of the time Good luck Ann and I hope you get some answers soon best wishes Bridget

[annieParticipant]

Hello Broncho
Thank you for your response,I did have radiotherpy last July which helped with the pains six doses in all.I was diagnosed four years ago, and monitored every three months sometime two monthly,After the radiotherapy my haematolgist was cosidering starting me on chemo,and was to have a mutidisplinary meeting to discuss wether i would need to start.As look would have it i did not have to have the treatment, i was glad in a way, that it was not necessary.Ihope you continue to be painfree,Thinking of you love Ann

[annieParticipant]

Hello Michelle,I retired at 63yrs, then went back part time for a further two years.I am now 69yrs and have always enjoyed my retirement, even though i was diagnosed four years ago. I just live my life to the full.I stared my training back in 1972 and stayed in the hospital setting for six years, then decided on a change, i had two options at the time, one was a place to do a midwifery course and another as a district nurse, i chose the district nursing, which i cont until retirement,It was a very varied busy career and i would not have chosen anything else.I loved my job and got great satisfaction from it, unfortunately changes are once again being implimented, and more of my colleagues have just retired,their were 52 quick retirement before the end of Jan, due to goverment changes, so i glad i went when i did oh by the way i worked in the city of Livepool.love Ann

[annieParticipant]

Hello David,thank you for your welcome, I am glad i have joined the forum, and up to now, everyone has been very welcoming.Looking forward to hearing from you again.Ann

[annieParticipant]

Hello Tom

Liccle ole you Iam glad i joined the forum, and found it just by accident,Just searching around the net, and it is nice to know that the support is around.
Thanks Tom onwards and upwards

love Ann

[JonnyPParticipant]

Hi Annie,

I'm new to the site and still learning (10 days in and counting). Our situations are a bit different I guess, but obviously I wish you luck with your treatment.

Best wishes, Jon.

[zasrsParticipant]

Hi Annie

From one just about to retire district nurse to another!! I have always loved my job and am so upset that on wednesday, i will no longer be a DN.I have tried to be there for my husband, an mm suffer, and everything and everyone else, with the changes in the NHS, i can no longer work as i would wish. I started my training in '71 we were both, Annie, trained so well, i am sure you agree!!

Good luck to you and family, keep positive:-D

sarah

[KWilsonParticipant]

Welcome. I hope you soon get some answers to your questions.

xxxxxxxxx

[Author]

Posts