This topic contains 7 replies, has 6 voices, and was last updated by 
12 weeks ago a rheumatologist at my local hospital in west London found I had paraprotein in my urine, so sent a letter to my GP for me to have a bench jones test done. I also received a copy of this letter. I gave it 2 weeks and called my doctors, whom said I can not have the test done as they don’t do it. I replied it could be myeloma, which my doctor replied not what so ever, I am completely wrong. so that same day I quickly typed a letter explaining my worries and photo copied the hospital letter from the rheumatologist and took myself to see a neurologist doctor at the same hospital that I had been under due to headaches and tremors with raised ESR. as I knew this doctor was in her surgery that day. I waited and she kindly saw me, read the information and said she would refer me to a haematologist. now considering that took time for a appointment, my own doctor still told me I was incorrect, while I went to visit her for better pain relief. anyway sorry for babbling on, I get to the point now. so I saw the haematologist 3 weeks ago and informed me that my bloods and urine were showing unusual things so he made appointments for me to have a MRI and 11 different xrays of parts of my body. saw him again yesterday to be told there was lesions in my skull and its now multiple myeloma I have. getting a hip bone biopsy this coming Tuesday and see the haemo doc in 3 weeks to see what form of treatment am going on. NOW AM SORRY IF AM COMING ACROSS AS A BIG BABY and going on a bit, but is that normal to wait another 3 weeks for seeing what treatment I have to start. A BIG THANK YOU IN ADVANCE FOR ANY REPLIES. X
sounds abit like me a couple of years ago, I live in West Yorkshire, and my GP was pretty fast on the uptake of things been amiss and referred me to local NHS 2 week wait, then 1 week wait for bone marrow biopsy then 2 week wait to see Hematologist again then she wanted full set of xrays said appointment would be in 2 weeks and I got rather angry at this point and asked why they didnt do everything all at the same time, full body xray done a week later and appointment leter came for 3 weeks to discuss findings, (she had actually seen and signed off xrays on day they were done and was going to wait 3 weeks) I went back to my GP and he found them for me straightway as I said how can the NHS keep doing this , I paid to go to see Prof Cook in Leeds to put my mind at ease and try and get my sanity back I am now seen at another local NHS hospital and its not brilliant but better than the first,
You are not a big baby at all its a hell of a thing to be hit with try and find some positive times in your day but at the very beginning this is bloody hard to try and get your head round, this site has fab people on it at all stages and the myeloma beacon page is great too,
Than you for your reply and comforting words, Helen. x Glad I have joined.x
hello chrissie. .welcome to the group none of us want to be part of. but in lots of ways this group can restore your sanity when no one else understands your fears and worrys .so alwYs glad of it . Iwas lucky even though i had been back and forth with bad back pain for months when the penny started to drop i was dealt with in the two week rule. scarry. and full on but mri. and xrays and bmb. were all done in a short time . my hematoligist was excelent and still is . a few weeks to start treatment im sure will be fine. and good luck when you get started thats when you. will probably need us most all of us will have been through some or all of. what your about to take on. rebecca on this sight told me yesterday when i was having a. very bad day. her. daughters new mantra. We Are all strong women !!! and im using that today. good luck with it all and come on whenever you need a listning ear or a question answered someone will know the right thing. …..annlynne
sorry. ;;;Strong Brave Women ;;; beter get it right .x ann
Hi Chrissy, Welcome. You are in a steep learning curve here and the important thing to remember is “take your time” you’re not going anywhere and this is a marathon not a sprint so go at your own pace. You do not need to know everything about MM now as your consultant/NICE will decide your treatment path so…if I had my diagnosis time over realising this is 1) life changing 2) one great big mind F*** 3)scary as hell, I would be researching more on mental coping strategies, try different coping mechanisms that may work for you, look into mindfulness, relaxation techniques etc because chemo is nothing compared to how you can torture yourself mentally. You are in it for the long haul so decide now how you want to run this race – your goals and values – and start it as you mean to go on. I have read many books etc since diagnosis and I am 100% sold on positivity and strength of mind enabling the healing process. We can say we are “Strong Brave Women” because this journey is hard, make no mistake, but it is doable so unless you have much physical damage to contend with I believe your quality of life is pretty much decided in the mind – and how we think and how we react to things is the one thing that we are in sole 100% control of. Sorry…after a while you will realise I just type my ramblings!
Rebecca
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
Totally agree with the comments above. My myeloma was picked up in October 2015 through the blood test that was part of a routine NHS health check. Apparently my GP had flagged up abnormally high protein levels in a 2009 blood test. Despite me having repeat,sudden and difficult to clear infections in the interim he had never thought to test my blood again!
Treatment for MM was delayed until a gynae problem picked up on the MRI from my staging could be treated. Had to really battle with my local hospital – and the Christmas floods- to get that one done! Finally started my treatment at the end of January on the Myeloma XI trial.
Dramatic fall in paraproteins in cycle one coupled with a horrendous reaction to the antibiotic I was taking was followed by a week’s rest and then two cycles where I seemed to plateau. But now the levels are coming down again but I am only likely to have a partial response by the end of cycle 6. So randomisation onto the stem cell transplant or more treatment with Velcade will follow.
Another MRI a couple of weeks ago showed more damage to my spine than they had initially led me to believe but the conclusion was no change from the previous scan. So looks like nothing has got worse but the deposits in my spine are not responding to treatment!
So yes, it is a long roller coaster of a journey!
I have been getting support from my local CancerCare and am just coming to the end of a course of 1:1 Alexander technique sessions which have really helped. Next I am going to have counselling to help me cope with the mental aspects of this battle. Is there anything like this in your area you can tap into Chrissie?
It’s amazing what strong, brave women and men can cope with when they have to. We have my daughter, her partner and 3 year old granddaughter living with us (since July 2014). I survived the granddaughter’s chickenpox in cycle 1 and my daughter’s chronic morning sickness this cycle. My husband is a great help but I’ve also indulged myself and got a cleaner for two hours a week!
Hopefully the daughter’s house will be ready for them to move into in the next couple of weeks and then I can get my own house in order before my stem cell transplant and do less running around after other people!
Keeping a sense of humour helps and having lunch out with friends! Focus on the things you can do rather than those you can’t!!
Good luck!!!
The topic ‘multiple myeloma taking long time time for treatment.’ is closed to new replies.
