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Multiple Myeloma
#1

After a VERY long, stressful day at work (12 hours) I was driving home chit chatting with my best friend and I got THE call.
Devastating News…

Rose*, my adopted Mother, who I truly consider my mother, not quipping about it, is a kindred spirit with me, she endured much of the kind of abuse I did and we have healed a lot together… and Thomas* her DH has been the kindest father to me that I have ever known.

They called me tonight, on my way home from work and Thomas started the call saying that he had some bad news. I could tell from his voice that it was VERY bad and I had to pull the car over before he told me.

Rose has myeloma… I get home, still in shock and do what I do…research… knowledge is power and gives me a sense of control…

There are three stages…
1.) Being Asymptomatic… peope stay in this stage for 10-15 years, no obvious effects or problems. They call it the “smoldering stage”

2.) Once the disease becomes symptomatic, therapy (chemo, radiation, bone marrow transplant) can achieve remission that will last on average 1 to 3 years. Rose is in this stage

3.) The disease will reach a relapse stage during which time treatment can no longer achieve remission of symptoms.

Multiple myeloma is an incurable, fatal disease

Average survival rate for multiple myeloma patients is about 2-3 years…OMG…

Overall, treatment is intended to help the patient live longer, with a better quality of life. The goals of treatment are to address specific problems caused by the disease and to slow its progression.

The statistics game says…

1-year survival rate for women aged 60-69 with myeloma is 66% in England

5-year survival rate for women aged 60-69 with myeloma is 23%

So in the next year… I have a 25% chance of losing her… and in 5 years I have a 75-77% chance of losing her…

OMG… I’m going to lose my mom…

I Hate having a medical background… I hate that I understand the reality of this…

OMG…

#2

girlfriend. What would you like to know? What a stemcell transplant entails? What its like to go thru? How it works? There are many aspects of a stemcell. Plus more than one kind. You can get stemcells from a donor or you can donate stemcells to yourself. Let me know and I can give you the run down of how and what I did.

I hate to use RosesDaughter’s forum to answer as she posted this for her own needs.

You can send any questions to the message area you will find on my profile.

#3

Hello There:

i just found the site/group tonite & was interested in u & ur moms story. i have to wonder how things r going now. seems ur last entry was back in august. i sure hope things r well.

Warmest Regards,
Lisa

#4

Hi, Girlfriend,

Yes, I have had an auto stem cell transplant and then nine months later a mini-allogenic stem cell transplant. That was in July of '06. I am now in remission. I feel good and my energy and strength have returned. The only area of concern if my white cell count continues to be low. I have monthly IVIG treatements to help rebuild my immune system. But I do want you to know that I lead an active life. I work full time, travel, and do not hestitate to be around people or live life to the fullest.
I don’t know how much you know or what you have read on transplants. There is so much to tell. I could probably help you more if you had specific questions.

P-Putt

girlfriend multiplemyeloma-cpt5559@lists.careplace.com wrote:

#5

RosesDaughter. Yes knowledge is power. I am a medtech with MM so I know this disease inside and out. I am a scientist and statistics are what make my work viable, but one thing I have learned in my personal life is not to count on statistics. I was diagnosed in 2000, stem cell transplant in 2001, relapse in 2007. 6 good years and I am still fighting. I was diagnosed with stage three. All the literature gave me two years. I’m living proof that statistics can’t always predict the human spirit, endurance, will.
Don’t give up because you’re in the medical field and have knowledge of this disease. Being in the medical field you must have seen the miracles that I have in my many years in the same field.

#6

wOW, You have a fantastic, insprational story to tell. My husband has one
of the types of MM that is resistant to chemo. The docs say stem cell
transplantt is the only way to go.
Can you plea tell me more about your transplant???
If you can, please RSVP as sooon as you can we need all the info you have.
Thanks so much,
Rod’s wife

At 07:40 AM 10/10/2007 -0400, you wrote:

#7

Hi Lisa,

My name is Larry. I have MM. My wife Patsy also has cancer. PMP. Pseudo myoxma peretoni It a tumor that starts by being attched to the appendix. You don’t even know you have it, until after you take out the appendix. We have chemo every day via the pill. However, we are not worried. We give to the LORD. He deals with it for us. He already knows what the outcome will be, and when it will happen. We enjoy every moment we have together. That is all we can do. We work Monday thru Friday.

Drop a line at mrtrouble24@yahoo.com. Please let us know how you are doing.

GOD bless you and your family.

Larry & Patsy.

momsway wrote:

#8

Good morning,

How are you today? Hope all is well for you? My name is Larry. I am a male. Sorry if I made you assume I was a she.

Anyway, Every 2 wks, I go to the doctors for blood work. Once a month, I have a 3 hr cocktail, it is an IV drip, it drips once every 3 seconds. Talk about boring. I also take revilmid, once every other day!! I work for a mortrgage company 5 days a week. It is a little scary knowing you have cancer. However, my wife and I give it all to the LORD. We let him worry about it. We enjoy our time together. She also has cancer. PMP or psuedo myeoxma peritonei. WE go thru this together.

Drop a note or if you wish to call, you can cell me at 1-407-416-8270. 9-5- ET.

GODS LOVE AND BLESSINGS TO YOU ALWAYS.

Larry & Patsy.

P-putt multiplemyeloma-cpt5559@lists.careplace.com wrote:

#9

Check out my photos and videos:

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Block invitations from Larry:
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Block all invitations:
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