Help: my auntie is currently living in france and... - Myeloma UK

Myeloma UK

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denimladyxxx profile image
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my auntie is currently living in france and has recently spent a couple of weeks in hospital due to severe pain in her sternum at first they thought she had a broken sternum but then after blood tests and bone marrow tests she has been put on several different tablets one of which is Lenalidomide which from what I can tell is for myeloma. She is out of hospital after begging to leave as my mum was visiting her in france the staff there really didn't want to let her out but gave in and let her home. Since coming home she has seen doctor who said in broken English that she has a blood disease but no name given, she asked if she had cancer and he said no but she is worried as she has lost 9 1/2 stone (not dieting) in a year and she has chronic pain in her back ribs and sternum as well as her wrists her ankles are swollen and I think its myeloma but don't want to tell her that and scare her I asked her for a list of her tablets and as I said the one used for myeloma is one of them. can anyone help please ?

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denimladyxxx
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barley1955 profile image
barley1955

Sorry to near about your Auntie , I had the same symptoms and I'm afraid it sounds like it is multiple myeloma. It took the hospital nearly a year after loads of tests and scans to find out I have it. In fact I was admitted because of pneumonia and then had a bone marrow biopsy and that was it. After 9 weeks in hospital I'm home now. I'm not well enough for a transplant so am on chemo and loads of drugs.Hopefully they can sort your Auntie out. Take care

denimladyxxx profile image
denimladyxxx in reply to barley1955

Thank you for getting back to me .. yes that's what I think but I don't want to say that to her as I don't want to scare her as she lives in France and has no other family there apart from a very sick husband .. I want it to come from doctor or hospital but I think the landuage factor is a problem

SAMBS profile image
SAMBS in reply to denimladyxxx

hi Denimlady. Im v sorry to read about your Aunt, I also lived in France for 8+ years, came back to UK Oct 2016 permanently.

Google Cancer Support France-CSF - there are groups in some of the different regions, which you’ll either discover on the main website plus some regions put their own websites on.

It is a Charity (called Association in French) run by English for English speaking members living there. They offer lots of support to both the client and their family, in terms of accompanying hospital visits, translating. many of the groups have weekly or monthly Open Days and open days, for their clients and social events, in order to fundraise.

The websites will you all that happening currently. I used to be a helper member in the Languedoc Roussillon. All groups have to be examined and passed as Hon Code ones for their online content. Your Aunt and her Husband hopefully may well benefit from being involved with them, giving you some peace of mind as well.

I also have myloma, which started out being diagnosed as “a blood disorder initially, which means I have a low white cell blood count. My 1st French Haematologist at end of August ‘16, said he thought my Thyroid gland may be responsible for the blood disorder. Sadly it’s more than one autoimmune condition I now have. Again a health history may be required because these conditions can lead from disease to another, meaning quite often there are infections involved.

If you want to investigate further, please PM me. Best wishes from SAMBS.

denimladyxxx profile image
denimladyxxx in reply to SAMBS

Hi thanks for your reply my auntie is now back in the uk living she has been diagnosed with myeloma and is currently on Chemo injections and bone infusions but has us to help her now xx

Maggy82 profile image
Maggy82

Hi, where abouts in France is your Auntie? I have a member of my family in France who has multiple myeloma and receives treatment.

denimladyxxx profile image
denimladyxxx in reply to Maggy82

We have moved her back to England this week as she does have myeloma and there's nothing more they can do for her

Guliver333 profile image
Guliver333 in reply to denimladyxxx

Sorry to hear your news. I am also living in France and was diagnosed with M IN February 2015. After a blood test I was referred to an oncologist within 30 hours and started various tests, eg bone marrow, blood, urine etc. Treatment began 2 days later.

I subsequently underwent stem cell replacement ( my own stem cells ), in July and was declared clear. I still received medication and constant observation, weekly, monthly and three monthly.

Unfortunately the cancer re-emerged this year ( February 2017 ) and I have been receiving treatmentsince that date. The treatment was less invasive this time as the result of the stem cell replacement did not give me a long enough remission period.

I am almost there and after 5 more weeks of chemotherapy I will be well enough to go onto the maintenance treatment.

I hope that your aunt will have more success with the treatment for her MM, and I wish her good wishes for the future.

Yobigfot profile image
Yobigfot in reply to denimladyxxx

Just reading sorry to her

SAMBS profile image
SAMBS in reply to Maggy82

Hi, Maggie, I’ve only just seen the post by denimlady today. Can you either please or PM, to advise what treatment you are having because I’m still waiting to see a UK Haematologist I’ve seen the Specialists for the other conditions I have, not the Haemo!

I guess appts are as rare as Hens Teeth! despite blood tests, my GP surgery here doesn’t seem too aware of connection between Myeloma and other AI or not conditions I have. Thsnks.

Originally in France I was told if my white cell count drops to 30,000 or less, then it could mean Leukemis I have, and cancer treatment would comment if the transfusion didn’t help.

My diet and meal choices are based on vitamin, mineral content plus some vitamin supplements. I have some honey daily on breakfast cereal of cornflakes along with fruit. I’ve stopped, after slow cutting down, all meds’ incl Levothyroxine (my decision) for Hypothyroid and my TSH has been dropping from 38-30-9 on last blood test. I’m both looking and feeling better.

I’ve had 2haemorrhages, joint spontaneous aneurysm and brain on 2013 with no prior symptoms. Stomach one in May this year, which treating doctor in hospital said was caused by ulcer and calcium of the v hard water type, not Milk. I was put on Omeprazole for a while, and have also bought a newer Brita Martello Water filter