[onlymeParticipant]

As you can probably tell I am new on here.. Mum just been diagnosed.. Really not sure what to expect… All I can say is the Myeloma
org were really good and efficient in getting a pack to me to read up on..
Not sure what my mum and dad are reading(If anything) but feel better being armed with info on what to expect over the next few months as we brace ourselves for the treatment.. CDT and then the transplant.Feel like I should have done better at school in Biology as I am making notes on Myeloma blood cells etc! what a minefield. am getting there though..
Any info or advice on what to expect would be bonus??
Am enjoying reading through your stories and am amazed at the support you guys give to each other..Well Done

[MinParticipant]

Hi Angie and welcome to our happy little group,
You have come to the right place for support of whatever kind you need.
It is indeed a complicated subject and I struggle to understand the blood side of it, but have learnt to describe the bad cells as fighting against the body then getting carried away with themselves.
It is all so strange at the outset and as you get more familiar with it you will be able to describe SCT like a pro who passed your biology exams!
Now that your mum has a diagnosis and a treatment plan, you can familiarise yourself with what to expect to happen as she works her way through CDT treatment. There will be up and downs (hopefully not too many downs) but we will be here to help with advise and lending an ear when it all gets too much for you; and her of course
I hope your Mum and Dad are coming to terms with the news and not too down as I know it can be a dreadful shock at the outset.
Knowledge is power, and knowing what is happening and why is often an easier approach than panic… Been there done that too, and still panic occasionally when a temperature raises its ugly head.
Your among friends now and hope you will drop in and keep in touch occasionally
Regards
Min

[brochoParticipant]

Hi Angie welcome from me too , you really have found the right place for answers and support .Even if your mum and dad arent up to reading up on myeloma yet they will be glad of your support As Min has said it does get easier to understand as treament gets going and the initial shock wears off. In the beginning it seems to take ages for treatment to get started but the medical teams are very thorough in getting all the necessary test results to be able to give your mum the best treatment.l Take care and I look forward to seeing your posts best wishes Bridget

[clarabellParticipant]

Hi Angie, I'm in the same position, my dad has just been diagnosed so trying to read up and take in as much info as possible, yes i am now googling words and treatments that are completely alien and trying to digest what they mean and what different levels indicate. Its is a lot to try and take in but I'm using this forum and reading posts that does give some hope that all will become clear soon. Best Wishes for you and your family, clara

[brochoParticipant]

Hi Clara welcome to our merry band . At the moment you must be feeking so overwhelmed with it all but it does all become clearer. My advice would be not to google everything but take it one step at a time Myeloma is such an individual illness andthe descriptions of stages etc on the net are very often outdated now Newer treatments are emerging all the time and outcomes are improving all the time too . Four years ago I was diagnosed and told my illness was stage four , this terrified me when I read all the info on the net However I am still here and going strong despite major surgery , chemo and stem cell transplant or rather because of all those thingsTake it a step at a time , if you can talk to the specialist nurse they are very good at giving you realistic information , relevant to your mum.There are lots of lovely people on here who are only too glad to answer questions and support you and your parents so please ask away. Take care and my best wishes to you and your family Bridget

[tomParticipant]

Hi Angie
A warm welcome to you, hope all goes well with your Mum's treatment.
You will know by now anything you need to know just ask 😀

Hi Clara

The same warm welcome is sent to you this is one of the best sites around so you will feel at home in no time 🙂

Love Tom xxx

[onlymeParticipant]

Wow, what a lovely sight greeted me this morning all these lovely replies.. thank you and what a welcome I have received!!
All is calm and we are getting used to the idea of the Myeloma topic being quite strong one at the moment! I have spent this week reading up on the subject but am only going on trusted websites.. ie here!!

Mum is starting the CDT on Tues after her few weeks on steroids etc.. Am wondering what to expect and how she will respond.. I am wondering if there are any special tips .. will her diet/taste buds change as I am trying to help her with her shopping/cooking?..

You all seem so kind and thoughtful, this is going to be a testing few months but one that we are going to battle through…

Mum has been told that the Stem cell transplant could be in a couple months depending on how the chemo goes.. so I am aware she can only have up to 6 courses chemo… so roll on tuesday lets get this started!!!!:)
Does anyone know what is the trigger that causes the specialists to say right we are ready to send you for transplant????

What are they looking for?

Anyway bye for now and am sure will pop back next week to see how everyone is!

x

[PerkymiteParticipant]

Hi Angie,
Welcome to our little group. They try to get the measure of cancer, Paraprotien, down until if it is not detectable it is in a plateau phase i.e. stable at a low figure, below 5 seems to be the norm. They will also seek to ensure that your Mum's other blood measurements are in good shape too such as platelets. This being ok she will then need a Stem Cell Harvest which I note you have not mentioned.

They carry out a Stem Cell Harvest to collect young immature Stem Cells that hopefully will not have been infected by the cancer, from your Mum. They use the same machine for Dialysis, I think, the procedure is similar. They then pump these same stem cells back in during the Stem Cell Transplant.

The CDT affects everybody differently but some common ground is DEX. This will probably give your mother mood swings, in some people they can go from being very aggressive to very weepy. If your mum suddenly goes from being a ?nice old lady? to a ?veritable monster? just remember, it is not her it is the Dex doing it. We call it ?dexattitude? .

Keep in touch they are a great bunch on here.
Kindest regards
David

[onlymeParticipant]

Hi David thank you ……It was piece of jigsaw that I couldnt find.. the trigger that would start things off for transplant!! Thank you……I will listen out for her levels of paraprotein, if that is the indicator…

I have read up about the transplant and seem to be aware of things that will happen from the harvest, it all seems so clever how they do it, I am very impressed…I have made myself a little sheet of notes to guide me thro what will happen!! but am also aware that it could change as we go through all this, so to take a day at a time!!

I will read up more about that when it gets the go ahead.. for now.. lets get through this round of chemo!! Right Dex we ready for you!!!!

Cheers

Angie
x

[BADGERParticipant]

HELLO angie and clara

Welcome to the site it will not halt all your worries but really helps you will find out most things here but you will definatley get support which is so important as most people have not heard of myeloma you can feel very alone David is very right about DEX so bear with it, it does get better and your mum and dad will soon be their old selves again
Love JO

[mhnevillParticipant]

Hello Angie and Clara

Welcome to this site which I have found so helpful. I am sure you will too.

Best wishes to your Mum, Angie, and I think it is your Dad, Clara.

Blessings.

Mavis

[onlymeParticipant]

Hi just wanted to send my best thoughts back to you too…
It is daunting and frightening, and this site is very re assuring as we can find things out if we choose too… I am hoping you are geting the info you need..

Regards
Angie
x

[GeoffBrowneParticipant]

Hi Angie,

Another voice saying "it's the dex!". However, after a while you do get to know what to expect and everyone can then plan accordingly. For me, days 1 and 2 after the dex were when I was particularly low. But it's also good to know that the dex lows do pass and you can then look forward to several good days. Oh yes, and while you're on the dex it tends to keep you awake a lot!

Don't be too daunted by the stem cell transplant. There are lots of us out here who have been through it and who get back doing most of the things they used to do just 2-3 months after getting home. No guarantees, of course, but it helps to focus on the positive.

[clarabellParticipant]

Hi All,

Angie I hope I'm not gate crashing your thread, it does sound like my Dad and your Mum are at the same stage, My Dad is also due to start CTD on Tuesday, don't know whether this will happen as he has a chest infection. I see your Mum has been on steroids and perhaps my Dad might need some of these also. I do know that we have been told my Dad is to have a Stem Cell transplant in approx 6 months. Already it seems that our journey is to be one with lots of support and adivce from the members of this forum to which we shall be thankful. I will start my own thread and we can keep up with our parents treatment and side effects.

Best wishes to your Mum and family and all other Myeloma forum members xxxx

[clarabellParticipant]

Hope all went well with your Mum today xx

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