[TEBEBEParticipant]

hi my name is tebebe i have just been diagnosed with primary amyloidosis and am just trying to get my head round it all im a mother of 7 children and feel upset angry scared guilty and having lots of test feel my body has been invaided i
i trust and believe in god and have just had to put everthing over to him with the support of my family amd friends but its so good to know there is another place i can come to talk with others and share
are there any ones in birmingham england or a place i can go to talk
i start my treatment in the ext few days
i dont know how best well to explain to my children they know bits but im still not full in the understanding of it myself

[tomParticipant]

Hi Tebebe

Sorry you had to join 🙁 us but a warm welcome anyways now you are here.
Seven Children wow I have three Sons all grown up and yes I/we found it pretty easy to tell the kids as we had been through it before with my Young bride (breast cancer) but I know its hard, it depends on how old the Children are as to how much I would tell mine ? three sons know all but Grandkids (we have six) only know Granddads got poorly bones (so dont jump on him ha ha)

Take a Look and see if you have a Myeloma support group near you and go along and join.

Good Luck in your road to remission (it can be done)

Love Tom "Onwards and Upwards" xx

[TEBEBEParticipant]

thanks tom wow you sound so positive just threw those words of encouragement you've made me feel ten times better thanks for that yes im gonna find out if there is a support group in my region

[PatGParticipant]

Hi Tebebe,
So sorry you have had to join this forum. I am sure we will be able to help in all sorts of ways.
I have AL Amyloidosis and was diagnosed in August 2012. I have been having Velcade, Cyclophosphamine and Dexamethasone as treatment. Frequency and dose have had to be altered as the initial regimen didn't suit my body at all. I am coping fairly well with the new regimen but have had a hiccup lately after a bad cold/minor chest infection. As with any of these treatments, it is not pleasant, a bit debilitating, but infinately do-able. The amyloids are on my kidneys, liver and spleen. Kidney function is my main problem but that is being monitored. Have you been invited to the National Amyloidosis Centre at the Royal Free Hospital in London? It was a good experience for me and I finally discovered which organs were affected which seemed to help enormously.
Everyone is different when it comes to explaining to family members. My daughter is grown and living in Canada so it was hard for me to explain in a way that would not have her getting on the next flight over for no reason, but she only deals with things when she knows the full picture. So – I gave her my explanation and the web address of the videos on this site dealing with amyloidosis. It does depend on the age of your children though. Please remember, this is not a death sentence Tebebe, it is manageable and although life will not be the same as before, it will still be a life we can enjoy if we look for the good things that come our way. I am afraid that I am in Loughborough and attend hospitals in Leicester so am not physically close, but side by side with you on your journey.
Although this site has mostly Myeloma suffers, the treatments are so very similar, there is always someone who can answer your questions. The nurses on here are very good too. I have spoken to them a couple of times.
The most important thing is to stay positive. It is the strongest weapon you have against this horrible disease. If I can help in ANY way please contact me and I will do my very best.
Much love
Pat xx

[MothasParticipant]

Dear tebebe, welcome to the forum.
Lots of good information here, and I've found people very helpful.

I can't help specifically with AL Amyloidosis as I don't have that particular varient of MM but I can only echo Pat's sentiments that this is not a death sentence, you will find the strength to negotiate the challenges that the disease will present to you. There is hope for the future with lots of research interest in this area and new treatments coming on stream on a regular basis.

lots of love

tom

[charisma4Participant]

HI Tebebe,

I was diagnosed with MM on Christmas Eve, so am going through the
same emotions as you at the moment. I'm sorry but I don't know anything about your condition, but I do know that people on this site have been so supportive, helpful and extremely kind. So stick with us !

I live in Four Oaks ,Birmingham.Be happy to chat anytime you need to talk to someone outside of the family.
Kind regards,
Lesley.

[TEBEBEParticipant]

hi pat thank you for the kind word sand support its so good to know that i can finally talk to others who have the similar understanding and feelings about this disease in been battling for a few months and since i went to London royal free hospital for my first visit its made me more confident to share this
i think that everyone i have spoke to are so positive and i am so thankful to you for sharing with me im starting to feel better about it all

[TEBEBEParticipant]

hi mothas
thanks for replying yes its good thank you whoever set up this forum god bless you
i really thought the desease affected only women until tom wrote me so im learning more each day

[TEBEBEParticipant]

hi chris
i found a forum site thats for amlyiodosis suffers but im gonna still keep the link with everyone here i knew something was not right with my body in June and the doctor was so good and quickly investigated they were so quick with everything and sent me to London where it was officially told what disease i had so im glad i know but sad its happened but speaking with you and everyone and reading about it i feel loads better im going to keep my positive hat on and work through this thanks for writing to me where is four oaks is that in England Birmingham

[TEBEBEParticipant]

hi Tom since speaking with you ive had loads of positive responses thanks for opening the door to me have a great day

[tomParticipant]

Hi Tebebe

Your more than welcome, am please you found a site that is specifice to you, but pop in every now and then and let us know how you are getting on.

Love Tom Onwards and Upwards xx

[VickiParticipant]

Hello tebebe

Sorry you've had to join this happy band but hey now you are here you will find lots of support! My partner Colin was diagnosed in October 2011 and had a stem cell transplant in 2012 (October-November). I am not familiar with amyloid but never mind, if there are any questions we can help you with please ask. It must be very hard to deal with and look after your children but try to keep strong, all will be well, we all have to believe that! I do 🙂

Vicki and Colin x

[TEBEBEParticipant]

thanks vicky and colin all the best to you both

[Author]

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