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How to cope

chantal1015
Posts: 9
Joined: Mar 2010

My dad found out last Friday that he has MM. He is 53 years old. He goes back tomorrow (Friday) to Mayo Clinic to talk about tx options, etc. Basically I'm just wondering how people that have MM or family/friends even begin to get through this. I'm devasted and I can't imagine what my dad is going through. This isn't necessarily a death sentence right? I don't know all the details as far as the stage and levels of everything. All I know is that they finally figured out what was wrong...his hemoglobin levels have been low so they've been trying to figure out for months. I try to google about survival rates, etc and it just ends up scaring me more.

meloasia
Posts: 11
Joined: Mar 2010

Dear Chantal,
More and more, with all the new medicine, MM is becoming a chronic disease.
There is no cure, but with medicine, the disease can be maintained. It is not a death sentence anymore.
My husband discovered he had MM by a blood test, high IgG. He had no pain, no symptoms.
So we were lucky that he was in early stage.
He took Thalidomide and Dex (medication ) for one yr. Follow by 8 cycle of velcade with vorinostat(clinical trial). He has about only 5%cancer cell in his bone marrow, and is ready for stem cell transplant after easter. He will be 63 APril 5th.
We give him great support, and me , wife being the caregiver, I try to live as normal a life as I can, I don't treat him any differently, we go on as before the cancer news.
Yes, he has his ups and down days. Side effects from these drugs are horrific.
But we have the fighting spirit to survive.
We know of 2 mm survivors, one has been in remission for over 6 yrs. So we hold on to these inspirational stories.
I hope my husband can be an inspiration to your dad.
And please write anytime, I will be happy to answer any questions you may have.
Tell your dad he is a survivor, he can do it.
Also knowledge is important , find out all you can about the disease, not just the survival rates etc, find out new developements, etc. I know everything inside out, I have become an expert.
Hang in there Chantal, you are not alone. You have me.

love,
Melo

Paul G
Posts: 2
Joined: Mar 2010

Chantal

I am 58 years old and was diagnosed with myeloma in August 2009. I have had 3 rounds of Revlimid chemotherapy in the Fall and a stem cell transplant in December 2009. Yes, there have been some side effects. But my cancer level is close to zero and I can do many things that I did before I had myeloma. My spirits are good and I have found this to be an important part of battling myeloma -- the mental along with the physical. While there is no cure for myeloma yet, it is treatable and patients can have many good years in front of them.

Hang in there.

Paul

chantal1015
Posts: 9
Joined: Mar 2010

To Melo and Paul,

Thank you so much for your words of encouragement, it truly means a lot! One question I have for you both is...with your experience with MM, what stages were you or your spouse diagnosed with? My dad is in Stage III :(
He starts chemo tomorrow. He's in a lot of pain to begin with...he's got a bad knee and back. I'm not sure what else he is taking for treatment at this point. Have you or anyone else who reads this heard of anyone making it through Stage III?

Thanks again for your messages!
Chantal

chantal1015
Posts: 9
Joined: Mar 2010

Sorry when I asked if you know anyone who made it through Stage III...I know it's chronic and I guess I don't know what would classify as "making it through" but is it possible to be in Stage III and then with tx get better and go down in the stages? That might be a really dumb question but I know nothing about cancer. I'm so happy to hear both of your situations with this have been getting better over time and not worse. I pray it all works out for all of us!

meloasia
Posts: 11
Joined: Mar 2010

Dear Chantal,
I know of 2 people .
One was a lady who was given 3 months to live.She was diagnosed few years back, she is still alive and kicking. She is now 73 yrs old.
ALso another gentleman in his sixties. He has been in remission for over 5yrs and is currently travelling around the world.
So Chantal, tell your dad he can fight this battle.

Most MM cases are discovered in the 3rd stage, because that is when the symptons and pain starts to come up.
Luckily, my husband discovered his at stage 1. He did not show any signs of the disease.
It was discovered because one of our friends suggested we get like 70plus different types of blood work. IgG was one of the test, his reading was 65, when normal range was 0-17.

My husband is going for stem cell transplant early April, meaning next week after the easter holidays. We are upbeat , and put all our trust in our wonderful doctor.

SO Chantal, you, your dad and the whole family work as a team and beat this beast.
So many people have done it,it is possible.

meloasia
Posts: 11
Joined: Mar 2010

Dear Chantal,
I know of 2 people .
One was a lady who was given 3 months to live.She was diagnosed few years back, she is still alive and kicking. She is now 73 yrs old.
ALso another gentleman in his sixties. He has been in remission for over 5yrs and is currently travelling around the world.
So Chantal, tell your dad he can fight this battle.

Most MM cases are discovered in the 3rd stage, because that is when the symptons and pain starts to come up.
Luckily, my husband discovered his at stage 1. He did not show any signs of the disease.
It was discovered because one of our friends suggested we get like 70plus different types of blood work. IgG was one of the test, his reading was 65, when normal range was 0-17.

My husband is going for stem cell transplant early April, meaning next week after the easter holidays. We are upbeat , and put all our trust in our wonderful doctor.

SO Chantal, you, your dad and the whole family work as a team and beat this beast.
So many people have done it,it is possible.

meloasia
Posts: 11
Joined: Mar 2010

Dear Chantal,
I know of 2 people .
One was a lady who was given 3 months to live.She was diagnosed few years back, she is still alive and kicking. She is now 73 yrs old.
ALso another gentleman in his sixties. He has been in remission for over 5yrs and is currently travelling around the world.
So Chantal, tell your dad he can fight this battle.

Most MM cases are discovered in the 3rd stage, because that is when the symptons and pain starts to come up.
Luckily, my husband discovered his at stage 1. He did not show any signs of the disease.
It was discovered because one of our friends suggested we get like 70plus different types of blood work. IgG was one of the test, his reading was 65, when normal range was 0-17.

My husband is going for stem cell transplant early April, meaning next week after the easter holidays. We are upbeat , and put all our trust in our wonderful doctor.

SO Chantal, you, your dad and the whole family work as a team and beat this beast.
So many people have done it,it is possible.

chantal1015
Posts: 9
Joined: Mar 2010

Thank you...you just made my day:) Now I can smile and try and be happy today and then tomorrow morning when I wake up and this sick feeling starts over, I can read these posts again and feel some relief.
My dad's MM was also found by accident....he's had a bad knee and was getting ready to have surgery...well the blood tests kept coming back with the low hemoglobin. They also thought they found lung cancer...well that was a huge scare but ended up being stuff left from when he'd had pneumonia about a month prior. Anyways, they tried all kinds of tests and finally found this. I wonder if my dad had symptoms of MM over the last few years but just never said anything. We did notice a huge weight loss over the previous years and I always begged him to go get checked out. He's stubborn though:)

I'm going to share these stories with him when I see him this weekend for Easter:) He's a very strong man, I know we can get through this!!

meloasia
Posts: 11
Joined: Mar 2010

Dear Chantal,
Yoour dad must have gotten this about 10 yrs ago. It slowly manifest itself.
Not to worry.
There is such advance MM medicine now.
Just have a great easter, and be grateful.

chantal1015
Posts: 9
Joined: Mar 2010

So you think there is still a chance he can beat this?
Have a great Easter!

meloasia
Posts: 11
Joined: Mar 2010

Dear Chantal,
There is more than a chance.
With the advances in medicine & research,
Your dad can have a full remission.
Happy Easter.
Built a fighting spirit , will to fight and survive, very important.

_mike_
Posts: 3
Joined: Mar 2010

I am 52 now and have had two bone marrow transplants, 6 mos of chemo to start, have been on thalidomide, revlimid, velcade,etc. I was diagnosed at age 44 and right now I am in complete remission (and have been for 3 years now) taking no meds (well except for bp and guy LOL). It can be beat chantal. Yes, they say it can come back but I say maybe not. Good luck to you all.
Mike

chantal1015
Posts: 9
Joined: Mar 2010

Mike---That is wonderful you are in remission! It's awesome hearing about people beating this...good for you!
Do you mind me asking what Stage you were in when diagnosed?

Right now my dad is up at St. Mary's Hospital (Mayo Clinic sent him over there) getting tests done to figure out what is wrong with his eye..they think the optic nerve is swollen or something...I don't know but has anyone else had eye problems with MM? Or rashes all over their bodies? My dad is just in his 2nd week of chemo and then after this, he takes something else (I'm terrible with meds so I can't remember the name..I'm thinking Revlimid but could be wrong)...I saw him over Easter and he was in good spirits :) He's got a great sense of humor so that helps.

Chantal

_mike_
Posts: 3
Joined: Mar 2010

Chantal,
They never told me a stage, the only thing I was told is that my myeloma cells were at 75% and had to get below 3% to have a transplant... The way they found out that I had it was because of a fractured rib where the pain did not go away and then more tests........ As far as rashes and such could that be from the meds?? I know when I was getting chemo my whole body would get really red..

Also, thank you for your well wishes as well. I know you guys are going through a lot, sense of humor helps a bunch---don't lose it.

Best of luck.

Mike

chantal1015
Posts: 9
Joined: Mar 2010

Mike,

Well, whatever stage you were in, I'm glad to hear you're doing so well.
My dad's was also found from something else being wrong with him. Makes you wonder how many people actually have some sort of cancer that just hasn't been discovered yet. Scary thought!

This rash all over his body started before they even diagnosed him with MM. He thought he had bed bugs..haha!

It makes me sick to think of everything we have to go through yet..I feel kind of selfish saying "we" because by far my dad has it worse than us. I wish it was me that had it and not him.

Thanks for replying to my last post...it means a lot:)

Chantal

_mike_
Posts: 3
Joined: Mar 2010

Chantal,
Am always glad to talk with someone going through so much---I know it has helped me in the past. My wife says the same thing as you, that she wishes she had it instead of me, well trust me it is just as hard on the caregiver, if not harder, than on the patient---so don't think it would help. Just stay strong and I wish both of you the best. Chantal, if you want to be a friend on here just send me a message as such and we can communicate that way or I can give you my email. That is, if you want someone to talk to.

Take care and best wishes.

Mike

chantal1015
Posts: 9
Joined: Mar 2010

Mike,

Could I have your email? I don't know how to message on here. Mine is chantal1015@yahoo.com.

Last week was rough...my dad's optical nerve is swollen and while trying to figure out what is going on with that, the doctors put dyes in him which caused him to go into kidney failure. He thought he was having a heart attack and couldn't breathe (I guess in kidney failure, liquid accumulates around your heart which gives the feeling of a heart attack) Anyways, thankfully he was up at Mayo already so they could take him straight to the ER. I went to visit and it was so hard seeing him so out of it. He was yelling at everyone which was hard to see as my dad is normally a quiet, patient person. I know it was the pain he's in, meds, etc.

Anyways, he got to go home yesterday! He is still on dialysis but the doctors say they are "cautiously optimistic" which must be good right? The cancer got worse since he had to quit chemo to get his kidneys working first. He's back on chemo and sounds like he's miserable. I was going to go up and see him this weekend but I think he just needs to rest and I have a 2-year-old so I think it would be best to wait. Plus my mom is exhausted and could use a break.

We got through the first major incident. I know there's more to come. My dad told me that it's ok right now but he's sure there will be more to go through. I told him I'm just going to be happy right now since we got through this:) Oh yeah...still no progress on his eye situtation but I think they are going to do a biopsy.

Sorry to go on and on! It's nice to have people to talk to that know what this is like. It's hard to talk to friends and other family members about it.

Chantal

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