[magicmomentsParticipant]

HELP…..

Well what a roller coaster the past few weeks have been. My husband aged 62 was diagnosed just over 2 weeks ago with MM after an emergency admission to hospital with calcium levels of 3.6. The following week was full of tests, X rays, ct, mri scans and bone marrow biopsy. He had an L3 compressed fracture for which he has had a vertebraplasty another acute fracture of T11. He has many lytic lesions of his spine and is in a fair amount of pain for which he is on morphine. He also has a very fragile T1 and now has to wear a  neck collar indefinitely he is awaiting a blast of radiotherapy to help strengthen this. The ribs and pelvis are also affected.

Chemo has been delayed a little to assist the healing of L3 repair. Hoping chemo will begin in next 10 days. We have been told he is stage 3 and awaiting cytogenetics results which I know there are some results that are not the best to have.

After lots of reading I am still a little unsure as what to be asking at our next meeting with haematology on 10th please can someone help with….

1. Which are the nasty cytogenics. So I can look at least as though I know what I am talking about.

2. What blood results should we be asking about on a regular basis ie Hb which I know has dropped from 15.1 in october To 10.9 last week. I know there are others that will give us an indication of the disease progression. Ie createnin please can you help us with some other key indicators.

I am a nurse by background but this is not my speciality so feel very lost. I have seen my husband of nearly 30 years go from an active fit healthy man to someone who needs assisting to shave shower dress and almost housebound etc all in a few short weeks. He is also a losing weight at a rate of knots 2kg in this last week alone despite myself and our daughter virtually force feeding him every possible calorie we can get down him.

• This topic was modified 8 years, 9 months ago by  magicmoments.

[cygnetParticipant]

Hi

I’m so sorry to hear you are having such a difficult time. Have you spoken to the Specialist Nurses on the Helpline – I’m sure they can give you the details/numbers you are looking for. Also the  American Myeloma Beacon site may give you some more info.

Love & hugs,

C x

[iangParticipant]

Hi magicmoments (lovely username by the way)

I’m sorry to hear about your husband’s diagnosis and spine problems.

There’s lots of information about myeloma in Myeloma UK’s publications
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/

It might be best to cross the cytogenetics bridge if/when you get to it. But if you want to read about it now here’s a recent article that contains lots of info:
http://www.nature.com/bcj/journal/v5/n10/full/bcj201592a.html

Mayo Clinic’s mSMART has 3 risk categories based on cytogenetics: standard risk, intermediate risk and high risk. Here’s their latest guidelines for newly diagnosed myeloma:
http://nebula.wsimg.com/4249c5fe4882f3bc9682df0076015f51?AccessKeyId=A0994494BBBCBE4A0363&disposition=0&alloworigin=1

(a note for anyone reading this in the future – this link may not work eventually because Mayo update their guidelines fairly frequently)

Your husband’s consultant will probably concentrate on the paraprotein level in the clinic, plus possibly the FLC results. The consultant, and other staff treating your husband, may also comment on Hg, WBC, platelets, neutrophils and creatinine, or may just say things like he is anaemic or his kidney function is ok. With your nursing background I’m sure you’ll be able play that by ear.

I guess the weight loss might be due to the myeloma, or loss of appetite, or muscle wastage due to lack of exercise. I weigh myself daily just after getting up in the morning, i.e. before getting dressed and before eating or drinking anything. My weight fluctuates through the week within a range of roughly 1.5kg, to a certain extent in time with the medication I’m on. If my weight starts drifting up or down I try to adjust how much I’m eating.

These NHS underweight food suggestions might help:
http://www.nhs.uk/Livewell/over60s/pages/underweightover60.aspx
http://www.nhs.uk/Livewell/Goodfood/Pages/Underweightadults.aspx

Good luck

Ian

[davidainsdaleParticipant]

Hi Magic Moments

Sorry to hear that your husband is having a bad time of it at present.

There is plenty of help and advice available, the specialist nurses on Myeloma UK Helpline are really helpful and knowledgeable. There may also be a local support group in your area.

Your story is not dissimilar to my own experience, emergency admission due to high calcium,spinal cord compression and fracture. First diagnosed at 59. I could barely move and was wheelchair bound for six months. I have shrunk by 4 inches due to spinal damage. We have a downstairs toilet which I renamed the torture chamber, for obvious reasons! In my case the first priority for the medics was to tackle the bone damage and spinal cord compression, before getting started on the myeloma.

Radiotherapy, chemotherapy and stem cell transplant followed in quick succession. It is a slog but my quality of life has improved beyond my wildest expectations when I was first diagnosed with MM, so hopefully for you there will be light at the end of the tunnel.

I have met a number of other patients at various Myeloma UK events which broadly similar stories, so don’t feel that you are alone on this journey.

Hope this helps. Good luck

David

[alwayzsmileParticipant]

Hi

I’ve just joined. My Dad has had MM for 7 years & 2 months but as of last Monday he has reached the stage where no more treatment is possible.  I am absolutely devastated, he is my hero and my life guide! I dont know how I will ever carry on without him.

[annlynnParticipant]

very little one can say about your post my heart breaks for you . A.long time ago a consultant told me to take my dad home and just love him i knew we had come to the end of a long road and there was nothing else. it broke my heart and still does to thinkof it. make the most of life your dad might suprise. you without treatment for a long while yet. xxx best wishes pet and remember. he will always be your hero. annlynne.

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