[pollyParticipant]

Hi everybody I feel like I know you all as I have been a member of the site for over a year and have quietly shared all your trials and tribulations, I am 58 and was diagnosed with a solitary plasmacytoma on my T7 vertebra in 2011 which was dealt with radiotherapy at clatterbridge followed by stabilation of my spine at the walton centre in liverpool useing rods and screws as the vertebra had collapsed, as my pp did not go away they new the little blighters where still there somewere and so I was put on zometer and wait and see however now is the time I have been dreading THE TREATMENT I have been offered the myeloma 11 trial which I shall most likely go for however with the risk of sounding dim I can not recall anyone saying they had to inject a blood thinner everyday to prevent clots thought it may have been another tablet like asprin ? Any advise would be good right now.

to all take care and stay well

polly

[eveParticipant]

Hi Polly
Well my advice is to go on the trials,you will be randomised for CDT or CDR first one is standed treatment second one is a new version,both available as first treatments.It is the Velcade which is second line treatment that is important,Velcade at the moment is second line treatment that is still under trials,so could be with drawn,but through trials is proving to be a good drug against Myeloma,so in the future it might be accepted as a first treatment drug.But that is all in the future.

Clexane is the injection used for thinning the blood to prevent blood clots,it does depend on your consultant,my personal believe is Clexane or another blood thinner should be the norm,but some wait until there are signs of blood clots.My husband injected himself for 8 months after having mass blood clots on his lungs,my believe is this should never have got to this stage if he had been having treatment to thin his blood.

Having gone through the treatment,and looking back,My husband and I think thinners and antibiotics should automatically run along side mm treatment,as infections and blood clots can do so much extra damage,there are some trials going on with antibiotics and MM treatment which must be a good thing.

Welcome to the site,let us know how you get on,many people sail through the treatment,lets hope you do not have any side effects.Eve

[jmsmythParticipant]

Welcome to the site Polly. My husband is on his 6th cycle of CDT. He injects Clexane every morning. At first it was a bit of a hassle for him but now it's 'old hat'. I hope things go good for you. Do keep in touch to Let us know how you are getting on

Jean

[pollyParticipant]

Hi Eve and Jean

Thankyou so much for your kind welcome and advise I feel a bit more easy by the need to have the injections given the side affects of clots which sound nasty.

Eve I am so sorry to hear of your husbands experiance with the clots but please be assured your advise has been a big help to me.

Jean I so look forward to that old hat moment as at the moment I feel a bit like the rabbit in the headlights.

Take care and stay well

Polly

[AliParticipant]

Hi Polly

My Mum (aged 57 at diagnosis last Nov) is on the Myeloma 11 trial. She had 6 cycles of RCD and SCT in August this year. She wasnt given anything to prevent clots and unfortunately developed 2 along the way. She now injects Clexane every evening, which she doesnt have a problem with. Except she wont be wearing a bikini anytime soon as her tummy is full of bruises – not that she would wear a bikini anyway! My Mum coped really well with her treatment, she feared it would be lots worse than it actually was. Its the fear of the unknown.

Good luck with it all and keep in touch.

Love Ali x

[eveParticipant]

Hi Ali

Tell your mum not to rub the site after injection,this is what causes the bruising,try not to touch it,hold the tummy firm,and make sure ,to use alternative sides.

Slim has very little flesh,but never had bruising only the flesh getting a bit hard.

Polly I know it,s hard,I make a better carer than patient,I know all the theory but I am a bit of a coward when it comes to my own body.It is easy for me,but it does help to learn as much as you can.Love Eve

[tomParticipant]

Hi Polly

Sorry you had to start treatment 🙁 but my advice would be "Take one Day at a time,rest when your body tells you, and more important use this site to ask complain and have that moan that I know you will have from time to time" but its well worth it.

Keep well and stay strong

Love Tom "Onwards and Upwards" xxx

[AliParticipant]

Hi Eve

Thanks for the tip, I will ask Mum what she does and tell her not to touch it!

Love Ali xx

[pollyParticipant]

Hi Ali as you say its the fear of the unknown that's scary but hopefully like your mum I will get through it..

Eve I shall not rub the site after the injection and thankyou for the tip

Tom I shall take your advise and take one day at a time.

Once again I would like to thank you all for the advise given today I feel a little more prepared and now I come out from under the blanket and as Tom would say onwards and upwards.

Take care and stay well

Polly

[andygParticipant]

Hi Polly
Sorry you have to start treatment. I started mine just over a year ago and have been through several different treatments but one thing has remained a constant that is the injections. I self inject tinzaparin daily to prevent blood clots I have from day one of my treatments. It's not too difficult and only sometimes a little bit painful but only rarely. Your specialist nurse will show you how to do it correctly. I do get the occasion bruising even though I don't rub the injection site. With a little luck you won't gave to inject to long before you go for sct. I find the side effects of the drugs a bit more difficult to live with than the injections but everyone is different.
Good luck with you myeloma journey everyone's is different and I hope your soon in remission.
All the best
Andy xx

[pollyParticipant]

Hi Andy

Thanks for your advise and experience which I appreciate, thinking I might bomb it and let my husband do the injections for me as he has done it for himself when he had a dvt

Went to the hospital today thinking I was just signing the concent forms prior to treatment only to find a bmb sprung on me, well did not see that one coming, so here I am at home licking the wounds and ready for the fight, who dares wins bring it on.

Take care and stay well

Polly

[VickiParticipant]

Hi Polly,

Sorry you've had to start treatment, but best to keep that mm under control. I'm like Eve, great at the theory but a complete whimp when it comes to taking any tablets!

Colin had to inject every day when he was on induction treatment. He was injecting something called fragmen. It worked for him, no clots :-). He disliked doing it but felt it was safer than me doing it…..bit clumsey me :-), not safe with a needle.

Good luck with your treatment 🙂

Vicki and Colin x

[pollyParticipant]

Hi Vicki

Yes its a bit of a bummer to have to start treatment which I believe will be this Tuesday coming I have been randomised on the CDT arm which is a little disappointing due to the trials consultant realy selling to me how positive the RCD side of the trial has been with his other patients giving such good results but at the same time I know that other people like Tom on this site have done realy well on CDT and so I shall keep this in mind as for the injections well needs must better than those clots I have been hearing about.

Take care and stay well

Polly

[tomParticipant]

Hi Polly

Well I had my first BMB with no notice and to be honest it was a lot better than the weeks worry if I had to come back later Lol.
As for keeping the clots at bay I took an asprin every day (worked for me)
You will be fine Polly I worked up till my fourth cycle and had to go on sick for a year, that year took me through My SCT so its worked well, near three years down the line and drug free 😎

Take Care
Tom "Onwards and Upwards" xx

[mhnevillParticipant]

Hi Polly

You came into this MM battle in a similar way to me although I managed about 17 months before I had to start treatment. I had six rounds of CDT which knocked the PP right back, although I haven't been really cracking since the treatment finished about three months ago. I coped very well during the CDT – hope you do as well. I gave myself a heperin injection everyday and it didn't worry me at all.

All the very best. Do keep asking questions. I got shingles during CDT so do be watchful.

Very best wishes.

Mavis

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