[Edna]

Re: Stage 3 multiple myeloma survival

by Edna on Sat Oct 24, 2015 2:50 pm

Dear Elena

I can see how difficult a situation you are in and how much it must be worrying you. Like you I have major problems physically managing all things now safely as a result of late diagnosis by incompetent hospital previously. I have since received relevant treatments by myeloma specialists in another hospital..

In the UK too getting financial help has become a lottery for disabled people and exceptionally difficult. People who are dying have been asked to tell offfice officials the date they will die in order to confirm eligibility for state disability income. My own experience has mirrored this crass assessment by qualified nurses with no knowledge of cancer or myeloma. So it is not just happening where you live.

Like you I want and need help at home at times to minimise the physical stress and difficulties.. I am reluctant like you to have just anyone in my home for this purpose.. My experience is that this low paid work attracts few competent, reliable and trustworthy sorts, I know this from past experience of a relative.

I have just passed over application for another attempt ,one year after first attempt, for disability payments, having been refused this. A welfare adviser will fill the form this time. She told me I put too much information and gave too much medical detail which they did not understand,' including unprofessional nurses. Yet we are supposed to provide medical information from doctors etc.

So I understand how things must be for you and only hope somehow you can get the help and treatment you need and deserve.

Edna

[Nancy Shamanna]

Re: Stage 3 multiple myeloma survival

by Nancy Shamanna on Sat Oct 24, 2015 7:57 pm

Hello Edna, Thanks for sharing how difficult it is for you to get some home care and a disability pension. The system you are dealing with does sound overly bureaucratic! I hope that you can cut thru all of this red tape and get some help at home.

Elena, I also hope that you can get the medical help you need.

[elena7bb]

Re: Stage 3 multiple myeloma survival

by elena7bb on Sun Oct 25, 2015 11:45 am

Hi Edna.

You are so right about all that you are saying!! As for me, I am hoping to get better and take care of myself. Don't know if it will be possible, but it is my only chance! There is no way I can find somebody to take care of me, so I am trying my best to get better and I am forcing myself also. I have no choice.

Thank you for your kind words, it means a lot to me and I hope you will be able to solve your problems.

[antelope1225]

Re: Stage 3 multiple myeloma survival

by antelope1225 on Sun Oct 25, 2015 6:01 pm

Hi Elena.

I was diagnosed with Stage 3 multiple myeloma and Light Chain Deposition Disease in May 2012. Mayo Clinic said the light chains had destroyed 75% of my kidneys and my prognosis was not good.
My Beta 2 Microglobulins were 8.5 - also very bad. But I am doing well 3 1/2 years later.

I took Thalidomide, Velcade and Dexamethasone and then had an ASCT. After the ASCT my cancer markers started going up. (Interesting what Terry said about Auto vs Allo transplant)

1 1/2 years after my transplant, I asked my oncologist if not eating sugar would help me. He said, "yes, but it is not just the sugar you eat - you need to keep your blood sugar low and steady- avoid insulin spikes."

You can control what you eat.- avoid sugar and starches.

I take 6 g Curcumin with bioperine every day (and take Omega 3 fish oil at the same time to help absorption.)

I eat lots of vegetables and coconut oil and I try to avoid toxins (especially chemicals that kill bugs or plants.) I quit coloring my hair and use substances that are natural on my skin.

I wish you good luck.

Cathy

[GaryH]

Re: Stage 3 multiple myeloma survival

by GaryH on Sat Nov 14, 2015 1:07 pm

As an update, I recently just had my 18 year anniversary of when I was diagnosed! It was a mixture of positive/negative feelings, but the positive ones held out.

[Little Monkey]

Re: Stage 3 multiple myeloma survival

by Little Monkey on Sat Nov 14, 2015 3:01 pm

I am happy hear you are still alive and kicking after 18 years post diagnoses