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Myeloma - any advice and how can I help my sister?

(34 Posts)
123lookatme Wed 17-Jan-18 20:34:36

So just 3 weeks ago after a bout of flu and rash my Dsis had blood tests, came back abnormal cells, then had mri and bone marrow tests which have today diagnosed myeloma. Mri was clear but bone marrow showed 10% .... not quite sure what the 10% is of...does thjs mean 10 bad blood cells??? Starts treatment of a chemotheraphy tablet with a steriod tablet and an injection in 2 weeks - every week for 4 weeks the a weeks break then restart cycle again ... for 6 months. She cant work during this time as works in a school and too much risk of infection. She is in shock and needs to process all the information.

I knew this was coming so read up on it all so feel as if Ive had the shock and am one step ahead. Ive reassured her Im hear to look after her with her partner when she needs it. We can take it in turns to take her for weekly appts.

Nurse explained not curable but treatable and to take everyday as it comes etc. And the treatment is well received by many patients.

It has come as a big shock to us all. What else can I do help

123lookatme Wed 17-Jan-18 21:49:50

Anyone?

TwitterQueen1 Thu 18-Jan-18 10:07:24

Hello OP.
Sorry that you and your family have had this news. It must be very upsetting for you. You might get more responses if you post on the cancer support thread here

In terms of what you can do, just be there for her. Text her, ring her, cook the odd meal for her, make sure she knows you're available. But most of all, ask her what help she would like. My DSIS is desperate to help me but her idea of help is not mine - she wants to manage me and take over for me, which is not what I want at all. I had to tell her to stop managing me and now she's gone the other way and doesn't contact me unless I ring her first. sad

123lookatme Thu 18-Jan-18 12:53:33

TwitterQueen - thank you for responding I really appreciate it.

I did originally post this in that post a couple of people replied but then it just got lost within, that was a while ago so perhaps I could try again. I did try posting it in general health but no response so asked for it to be moved her.

Ah I think I might be verging on the "managing" side of things. I just want to make her feel that she;s not on her own and I want to take all the everyday stressful things away from her so she can focus on herself. Im Miss Organised and always have been in our family and I did say yesterday to her I hope you or your partner doesnt feel as if Im being bossy or pushing him out but they both said they were glad I was there (got diagnosis yesterday) so will probably be a little more gentle with my approach. Thank you again Twitter

TwitterQueen1 Thu 18-Jan-18 14:20:38

Some people like being managed though - and I'm a grumpy old git!

Things that annoyed me:
My DSis saying "I wouldn't feel right if I didn't take you to the ward." I didn't care whether she felt right or not. It wasn't about her. I had asked her 3 times to just drop me off and she made it all about what she wanted to do, not what I'd asked her to do.

"I'll drive you down to xyz.." I asked her why? I didn't need to be driven anywhere. But she had decided we would do Christmas shopping and that she would take me... without any discussion.

They're probably still in shock and will need time to process things so they may well be very glad of your help. I think you just have to keep a quiet but constant presence and do what they ask, not what you want.

SantaFanta Thu 18-Jan-18 14:58:33

Sorry about your sister, OP. I can't tell you much about the medical side of things that she may be experiencing but you, as a sibling, may be tested to see if you are compatible with her to donate your stem cells. There is a one in four chance as a sibling as I understand. This is what I did for my sister who has the same condition. That side of things was a very straight forward process for both her and me, although she did have to spend several weeks in isolation in hospital for it. Best advice I can give you...is don't google myeloma...my sister didn't fit the typical patient profile at all and what I read scared me unnecessarily. Every case is different. I wish your sister all the very best flowers

123lookatme Thu 18-Jan-18 15:39:04

Ah too late I already did SANTA but I did a sensible thing by being careful which sites I went onto - first was the NHS website then to the Myeloma UK site which I found really useful and alot less scarey. The nurse we spoke with yesterday was a great support and explained so much. Twitter - taking your advice. Thank you again both of you

WhatKatySaw Fri 19-Jan-18 18:36:47

I was diagnosed with Myeloma last March and underwent a similar treatment regime to your sister. The thing that I found hardest to deal with was the mood swings caused by the steroids. My week would be split into two halves with the first half of the week when I had my treatment being positive and the second half when the steroids wore off being an emotional wreck and incredibly tired. Going through this week in and week out was very difficult for me but also really hard for my partner and family as they had to put up with my mood swings! Obviously, everyone reacts differently so hopefully she won't experience this too much but having people there who I could tell how I was feeling was a bonus. Not being able to work was also really difficult as you have very little to talk about other than appointments/ treatment/ how you've slept etc so I am really boring as well!!

You sound like you will be there for her in anyway you can and I know that I wouldn't have been able to got through the last year without my sisters and family

nevermindthebollox Fri 19-Jan-18 19:32:25

I was diagnosed with myeloma 9 years ago in March, it was a horrible shock not least because I was 14 weeks pregnant with DS (he is now a happy healthy 8 year old) I'm a very independent person so didn't want people pandering to me i just wanted to be treated as normal, my friends and family know me very well and did just this but were there if I needed lifts to the hospital etc. I guess we're all different and it depends on the type of person she is as to how you help her.

I just wanted to say that it is not all doom and gloom, I was very poorly, and had to undergo a lot of chemo/radio and I had two stem cell transplants. But I have now been in remission for 6 years and feel normal and healthy, I went back to work a year ago and am loving life!

All the best to you and your sister

AuntieStella Fri 19-Jan-18 19:45:47

I think this thread

www.mumsnet.com/Talk/life_limiting_illness/2424732-A-thread-for-those-supporting-relatives-with-life-limiting-diseases

might be a good one for you, 123

flowers

123lookatme Fri 19-Jan-18 21:22:12

Thank you everyone for replying. I was beginning if anyone would reply. These replies have given me a different perspective. Im beginning to tell family now for her...she cant face telling people straight out she's told her employer who broke down twice so she's asked me to tell family first...its been hard.

What things did you do at home whilst off? She usually keeps herself busy so not dure how she will cope being at home. Any advice would be appreciated.

123lookatme Fri 19-Jan-18 21:25:23

Her treatment should finish July if alls well we are thinking of booking a big cottage to all go away in August for a holiday sure she will be ready for it.

123lookatme Sat 20-Jan-18 09:42:37

What side affects did you experience? She will be on a chemotheraphy tablet, a steriod and either thalidomide or something else cant remember the name but might begin with V. On her notes it says mainly tiredness ... how did you combat that? Did you sleep in the day? Constipation as well did you take anything for this oh and shes abit worried about hair thinning. Any advice would be welcome

nevermindthebollox Sat 20-Jan-18 10:38:19

Like I said I was pregnant when diagnosed, so looking after and bringing up ds took up my time when I was off work so boredom or finding things to do was never an issue for me. When I was signed off work I was only about 16 weeks pregnant so don that point until the birth I spent my time reading, watching films, cooking recipes I'd always wanted to try but never had time while working full time, spent time leisurely wandering around the shops, crosswords, puzzle books etc.

My initial treatment was CTD which stands for cyclophosphamide thalidomide and dexamethasone (the steroid). I was fine on this treatment I didn't find it too harsh at all, the only issue I had was with the steroids, I was fine on them but got exhausted for a couple of days into my break (I think it was 4 days on 10 days off but it was nearly nine years ago so can't remember exactly) but we got to knew the pattern and on these days we would arrange for my mil to look after ds. My hair was normal on this treatment but I did lose it all when I had my stem cell transplant, will your sister be having a stem cell transplant?

nevermindthebollox Sat 20-Jan-18 10:39:44

Re constipation I did suffer with this but only during my transplant, they gave me senna and magnesium in the hospital every morning for this

123lookatme Sat 20-Jan-18 20:17:53

Thank you for replying I really appreciate it. She us having treatment - 2 tabs and an injection not sure of the names but she has info so when I see her next will find out but if I remember definitely 2 tabs and one injection. 1 tablet is chemotheraphy the steriod and then another tablet so guessing steriod is the injection. The other tab will be either thalidamide OR some other drug they are undecided and will know once they have discussed her case before treatment. She will go every Wedn for 4 weeks then 1 week off, then again 4 weeks on then 1 week off for 6 months theyve said. She starts 31 Jan

123lookatme Sat 20-Jan-18 20:28:40

They havent mentioned stem cell transplant at all. Im aware of it and have been told by a friend who is a kidney constant that it will last resort if treatments dont effectively work. Her consultant told her they regularly get together with experts from other local hospitals to discuss each patients case so she is in the best hands as the experts all come together and all decide the best treatment. He said this treatment she will be having is very effective so

WhatKatySaw Sun 21-Jan-18 08:51:11

It sounds very similar to the treatment I have had. I went every week for an injection and then took the tablets at home. This was 4 weeks out of 5 with one week off. I would also go for blood tests each week as well. I was very poorly when I was diagnosed so started my treatment as an in patient and the thalidomide component of the treatment really affected the nerves in my legs and I had this stopped and my treatment changed slightly. It took me a few months to regain feeling in my legs so my mobility was affected.
The steroids meant that on the days I took them, I averaged around 2-3 hours sleep a night so this affected me. Initially, I felt guilty for feeling tired but now I realise that if I feel tired then my body needs to rest so I do. I also make sure I drink plenty of water as this helps.
My hair thinned out during this treatment but I didn't lose it at this point. I just had it cut shorter.
In terms of filling my day, when I feel up to it, I will try to get out. If not, I invested in a few craft projects and jigsaw puzzles. I find I lack concentration to do them for long but I have them if I want to dip into them. Also having something like Netflix helps as I have been able to catch up on lots of TV series.

123lookatme Sun 21-Jan-18 09:25:11

Thank you WhatKate this infirmation helps. Yes they said to drink 2 to 3L of water a day to keep the kidneys working well. Ah yes sge has to go to her own Drs day before yo get a blood test the results will go straight to the hosp the next day to see if she's well enough to have treatment

123lookatme Sun 21-Jan-18 09:27:01

Im planning on going over once a week or every 2 weeks to take her out if she is well enough and once we know how she is with the treatment that is... to relieve the boredham more than anything

iVampire Sun 21-Jan-18 15:14:36

I have leukaemia (CML) do am on a completely different regime (oral chemo with an anti-gout chaser, plus the advice to drink lots of water) then swopped on to a biologically-targeted cytotoxic drug.

IIRC, the drink lots advice is both because the drugs can be toxic to liver/kidneys and also because the chemo breaks down the cells you don’t want and they need to be excreted. So keeping urine flowing is held to be good. There’s s water cooler in the day unit and free bottled water in outpatients, so they must mean it!

Yes, regular blood tests - early days as blood cancer patient feel like a pincushion. But the treatment for myeloma has (AFAIK) improves considerably, and if they can get her stable it then frequency of testing goes down.

My biggest side-effect was tiredness. So just being alert to what might need to be covered so she can sleep could be important help.

And just be led by her - ask how she is by all means but remember that some days she’ll not want to talk. Forgetting you have cancer and just getting on with other stuff can be important. Especially if you don’t feel particularly unwell.

southchinasea Sun 21-Jan-18 15:38:11

My father was diagnosed with myeloma 7 years ago, and I remember the shock at the time of diagnosis.

He had a stem cell transplant 5 years ago and is generally doing well. Whilst not curable it is treatable and well managed. I'd say the main difficult thing for him has been tiredness, but he has better weeks and trickier weeks. He's often energetic enough to manage long bike rides and walks, socialise and travel. Other times not so much. And also his immune system is weaker, and especially through the winter can struggle with infections. But he's 70+ so a different situation anyway.

But definitely has all been more positive than we thought at first, reading the statistics for prognosis etc. Treatments and management of myeloma have improved hugely in the last 5/10 years.

123lookatme Sun 21-Jan-18 15:59:16

Thank you again everyone the information is really helpful to me and is helping me process it all. Told my Dad today...he's so upset. Housebound himself due to ill help and feels useless but he will be fine.

nevermindthebollox Sun 21-Jan-18 16:16:15

Like the pp said treatments have improved hugely in the past 5-10 years, I was terrified that I wouldn't even get 5 years survival and here I am living a relatively normal life 9 years down the line, even though it isn't curable it is very treatable and while the treatments can be unpleasant you do come out the other side and think that it was worth it. Please keep us updated on how your sister is doing

123lookatme Mon 22-Jan-18 08:30:39

Thank you nevermind again truely grateful for you taking the time to reply. One thing I did mean to ask - she was told she would have to have a dental check up Im assuming to check her bones but she wasnt sure if that was before she started treatment. I said I would call the nurse for her today to see what's what.

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