[katybParticipant]

Hello all,

I posted on here some time ago, to scream HELP as my mum had just been diagnosed with MM. All your comments were comforting and reassuring during this time and i forwarded them all on to Mum.

We are now at treatment stage, Mum begins 6/1/2016.

My Mum had written ( a very long post) but in a techno phobe way, she lost it 🙄💕

So this is my way of giving her a helping hand to introduce her to the group and help her along this difficult journey with those that have walked before her.

I have had Mum on a stable diet of water, ecchinecea and cucurmin for the last year!! ( unsure how much it’s helped, I think it’s helped me though!) since MGUS diagnosis.

Mum is 62, and in good health ( looks and feels great)
<p style=”text-align: left;”>We are a strong loving family but nothing quite like hearing and positive reassuring stories from those living with MM too.</p>
Now I just need Mum to find this thread… xx

[annlynnParticipant]

hya katy i started my mm journey on the 4th january 2014 with the CDT treatment six months of that followed by a stem cell transplant in august 2014. im now in what seems to be called partial remmision feeling fine the treatment is gruelling but with a good close family behind you youl be fine i was 59 on diagnoses and. have lived very much life to the full around treatments. i am not saying for one minute its easy but a regular poster on here always said it is doeable and it is. keep chin up and fight the fight. best wishes. annlynne

[annlynnParticipant]

ps. that diet is strict mind does it include food. haha xxx

[johnbParticipant]

Hi Katy,

I am 72 and have had MGUS followed by CDT treatment starting in 2013. I agree entirely with annlynn. During the CDT I had trouble coping with the steroids and the stem cell transplant (June 2014) is tough but at the other side now and fingers crossed, feel fine and have just started going to the Gym to keep the rest of the old body ticking over.

As annlynn states it would be a good idea to provide some food especially coming up to Christmas.

Best wishes to you and your mum

[katybParticipant]

Thank you so much for both replying.  Hearing it’s doable.. Helps.

Also that you’re both in remission, long may it continue. Great news on the Gym, a consultant that we saw in London said keeping active ( when able)  and drinking water was the best advise he could give

Mum may have more specific fears and concerns that you’re able to help with.

I promise I’m letting her eat too.. and not only blueberries.. what ever she wants. Actually my parents have just come back from a cruise ( some well earned rest before treatment) I’m sure she’s indulged lots, and rightly so!

Have a great Christmas 🎅

[rebeccaRParticipant]

Hi Katy, At 62 your mum will no doubt do the treatment including an SCT. She is lucky in that she will be treated early and therefore her body is in a much stronger position for the task ahead. I was diagnosed at 51 and am 2 years at xmas post SCT and no treatment (for now). Please ensure you stop supplements when treatment commences as some can interfere with their efficiency, exercise and eat healthily and plan plenty of little treats a long the way. None of it is pleasant but it is perfectly doable. Hope your mum comes on here because as treatment starts its really good to ask others who have been there about anything that you are wondering about or worrying about. This is tough so start mental discipline and that means trying to not let MM take over your life/thoughts all the time. You need to be positive and realise quickly that worry does not help anything and merely drains your strength – look towards something that will help you stay strong/relaxed. I liked to exercise and that helped me a lot mentally and I also read up and took a few mindfulness classes – this helped me focus on day to day living without constantly wondering about the future/family. The stronger you make yourself the easier this time will be. I am also a great believer in treats – you will know from your first treatment cycle your up days and the down days – plan things to fit this rhythm – ride the waves. I always felt it important to remember that “you cannot always control what happens to you but you can control what happens in you”. When my hair was growing back and I was having a “bad” hair day I was reminded that my hair did not control my emotions – it was all me and how I chose to react to it- I think we all need a different mindset in challenging situations and the earlier it is developed the easier it will be.
Best wishes,

Rebecca

[janwParticipant]

Hi Katy

I’m aged 58 years and currently going through treatment again for my relapsed myeloma. However my first CDT treatment followed by stem cell gave me five years of drug free remission. I think one of the hardest parts of accepting the treatment for your mom is when she is feeling so feel so well. But as others have said above, the treatment can be tough and tiring, but it’s usually only for a short period.

With me going through treatment again, I would advise your mom to read the myeloma material about her specific type of proposed treatment so that she can ask her consultant any questions which she may have about her cycles/drugs. Myeloma uk also have a useful patient’s diary and a tips book. Before the start of treatment, I would suggest she has ensured she has had the flu jab, also a haircut is another essential just in case the fatigue gets too much. I also stocked the freezer with some ready meals for hubby, because he is not too good at cooking! I purchased some more pj’s as I did’t have many with me relying on hubby to do most of the washing because fatigue has become more of an issue three months into treatment. Nausea can be an problem with some of the drugs, but again keep ongoing discussions with the consultant about the different range of nausea drugs available.

I hope all goes well with your Mom’s treatment. Whilst on treatment, she just needs to listen to her body and only do things which she feels able to undertake.

Jan x

[katybParticipant]

Hi Rebecca,

Congratulations on your 2 years post SCT, long long may it continue.

We had heard about stopping supplements during treatment,and definitely will. Desperate to keep mum’s immune system fighting fit after treatment, due to her venerability to infection

I love your outlook, ‘don’t let MM take over your life & thoughts’

‘You cannot always control what happens to you but you can control what happens in you’ This will become our new mantra, thank you.

I had read that you get high’s & lows during treatment. That one of the drugs keeps you awake during the night. I guess we will hear all about it on the 6/1.

We’re good at treats so will ensure Mum works out her high days quickly. We met with a professor in London for a second opinion he had said 1% loose their hair during treatment, you mentioned, when your hair grew back? did you loose your hair during treatment? Again you adopted such a positive outlook, ‘my hair did not control my emotions., good for you.. besides Mum always wanted long blonde hair…. if it happens maybe we’ll get her a platinum blonde wig!

Have a great Christmas Rebecca and may 2016 bring you another year treatment free.

 

Hi Jan,

Sorry that you’re back on the treatment rollercoaster, but great news that you managed five years in remission, may it be 10 years next time…

Thank you for your practical advice, well received, will begin purchasing tupperware for my meals on wheels deliveries. Annoyingly I live 3 hours from Mum so will bulk cook..

I think she now has had the flu jab as she had pnemonia a couple of years ago. Like you said listen to your body, sleep when you need to sleep.

Have a great Christmas, and roll on 2016 when you’re treatment free and in full remission.

[annlynnParticipant]

just a quick note on the hair thing first course of treatment. kept my hair. not as good condition as, normakl. but ok only lost hair during stem cell trancplant. xxx then. wore lots of nice wigs. blonde one day. brown. the. next. xxx

[katybParticipant]

Thank you Annlynn. Mum had read that it’s common you loose your hair during SCT. So we’ll Go shopping, drink bubbles, try wigs on and laugh..

So, any good recommendations on wig shops, prefer London or Birmingham.

[rebeccaRParticipant]

Hi Katy, Whilst you don’t lose your hair on many of the treatments it does get in very bad condition – mine was/is always shoulder length – if I had my time over (which I will at some point) I would opt for a short haircut. Regards wigs – I chose not to tell anyone about my cancer and spent a fortune on very natural wigs so no-one would know – matched to my hair/length etc – cost a fortune as they are hard to keep well at shoulder length. Again, I would cut hair in treatment and go for short wigs (that can’t rub on collars etc)- you do not have to pay a fortune to have fantastic hair. I missed my wig when I finally took it off as it was great to just pop on and go! but after SCT I found it too hot to play tennis in the sun with the wig on. Throughout treatment and even now I collected motivational quotes to “gee” me on. The first one was always quoted on this site by a past member Eve and it became my mantra and when my mind started to wonder into unhealthy territory I repeated it over and over again – ” Worry does not empty tomorrow of it’s troubles, it empties today of its strength”. I believe MM is a real mind game – much harder that any of the treatment… I also liked “Be miserable or motivate yourself – its always your choice”. I am sure you will find your own particular coping mechanisms that will help you along the way.

[katybParticipant]

Thank’s Rebecca, great idea to purchase a wig and match to your own hair, I know Mum will  want to go down this route. We have already contacted a place in London and she’s going to have a telephone consultation with them first

I am a firm believer in strong mind, strong body. My husband was dealt a pretty rotten dealing when it comes to health, he spent 1 year in hospital, had 2% chance of survival. He his now back to full health and happily back on the golf course!

All your quotes will be printed off and placed in a box titled ” When I’m having a cr** day!”

Thank you. Have a great day tomorrow.

[annlynnParticipant]

agree
with. rebecca as always. i used to wish after my sct that she lived down the road to me she helped me just little things but we must rememmber. were human and we will have tough down days then these qoutes come into there own natural images was my wig shop they were great. you do get a voucher from your chemo nurse for your first one and theres no restriction on what you choose price wise. merry xmas to you all. xx annlynne

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