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Survivor in 3-4 year remission?

Susi
Posts: 6
Joined: Mar 2003

March 25 will be my 4-year date of diagnosis. Am doing well in remission, always anxious about recurrence. Any thoughts?

shelleyd
Posts: 1
Joined: Mar 2003

Susi,
I am 1 year survivor with mutiple myeloma. I just had the flu and if you don't think I was scared that I came out of remission, but they said that was a common fear. I was phase 3 before they diagnosed me and I am now 51 years old. I had the stem cell transplant and it took a good six months to recover from that. I have a 17 year old son so my main concern was living to see him get on his own, plus I have 12 miniature donkeys that are my hobby and I want to continue to care for them. I had to go back to work which I really feel made me stronger faster. I am constantly scared that I will have a recurrence, constantly wondering about every ache and pain that I have, is it cancer related, or because my bones were so bad by the time they finally diagnosed me, is that just a longer recovery. I have really good days though, it's just that I have never had to face mortality before this. I lost 4" in height due to the fractures of my vertabraes, and my hips seem to be right next to my ribs, whereas before I had a waist. I do lots of back exercises on my own, mainly in the bath tub, to regain the muscle strength that I used to have. If it's not too personel, how old are you?
I have to leave for South Carolina Monday, my mother had a stroke and I'm going to visit. I come home March 14, then I'll be by my computer again if you would like to keep in touch. Let me know.
My name is Shelley and e-mail is donahuess@aol.com

Susi
Posts: 6
Joined: Mar 2003

Hi,
Thanks for replying - it is nice to communicate with someone new who has my cancer. I was 49 when I was diagnosed and am now going to be 53. Everything you expressed in your answer is ditto for me. I was nearer to stage 4 than 3 when the cancer was found. Hemoglobin was 5.0 and they were speechless that I was still alive with the condition my body was in. Numerous tumors throughout, both femers, neck, back, skull and shoulders. Did you have extensive chemo before transplant? Mine were 96hours of continuous chemo then two weeks oral; repeated for 4 months with numerous blood transfusions in between. I had to quit my job, and although feeling quite well have not gone back to work a 40 hour week outside of my home. I am doing some partime computer work and trying to make it that way. I still do not have the energy or physical stamina to work full-time. When I was diagnosed, my youngest son was 7, the next 15 and the others were on their own. I too, prepared for death with a will to make my wishes known and that my children be taken care of. But as we both can see, God had other plans for us. How was your ordeal with the stem cell transplant? Did you have Total Body Radiation? Did you have to harvest cells 3 times and each one seemed as if it was getting harder and harder? I was on aredia for 26 months were or are you still? I have found the most comfort in working with other cancer survivors through our support group and am going to take a volunteer course so that I can work with ongoing chemo patients. People tell me I am an inspiration to them and maybe that is the mission God has saved me for. My last check-up still showed remission and as I said before was made aware of again the chances of it returning. Am concerned but not unusually so or alarmed by it as this was told to me going into it. Did you receive enormous amounts of blood and platelets like I did? (over 75) My biggest problem still is muscle weakness and numbness in my feet and fingers. Some days it is terrible and subsides others. From what I am reading there is really nothing to do about it but live with it. I have been reading alot about drugs but most are saying it does not help. Well I've gone on long enough, again nice to talk with you. Hope your Mother will be ok - I miss mine so Susi

berta25
Posts: 1
Joined: Mar 2002

Hi to Shelley and Susie,
It was so nice also to find other women with our type of cancer. I'm 48 now, I was diagnosed 5/30/01. I literally woke up on 2/11/01 with back pain (T-8) and after lots of tests was told I had multiple myeloma. I couldn't even spell it at first. I only had radiation at T-8. Because I was stage 1, I was put on thalidomide (200 mg daily) and was in remission in 1 month. The numbness in the toes espically the right foot, seems to be the worst side effect. We have an 11 year old daughter, and our 24 year old son and 26 year old daughter are both married. We are looking forward to the birth of our first grandchild in May. I remember when I was first told I had cancer, I thought I wouldn't live long enough to see her (my 11 year old Daughter) graduate from high school. This is the first time I've checked this web-site since the summer of 2001. At that time it seemed that most of the people were children whose parents had multiple myeloma. I was so discouraged and probably still so much in denial that this is the first time I've checked the message board since then. I live in a community that as far as I know has no one else close to my age with this type of cancer.As I'm sure you've found out, life is never the same again, I'm grateful that I've been as healthy as I have. After a 6 month medical leave I was able to go back to work part-time. In May I will be cutting my hours from 30 hours a week to 20. I'm always so tired, is that normal? The compression fracture at T-8 is still very painful, but with pain meds I seem to function fairly well. What were you told as far as life expectency? I was told possibly 10 years, my family and friends feel that is not long enough, I feel I should be grateful that I have possibly that long. Thanks for sharing, I can't tell you how much this means to me!

Susi
Posts: 6
Joined: Mar 2003

Hi Berta,
I can't believe it's taken me this long to check back and see if there were any other persons out there who I could correspond to. In reading your letter it appears to me that you were very lucky in having your diagnosis so quickly made and only being in Stage l. You are so fortunate!! and I'm sure your survival and remission is going to be long term. When I was diagnosed, I was Stage lll with tumors throughout by body from head to toe. I was on chemo for the first 4 months with inpatient 96 hour continuous chemo the first week and then two weeks following of oral chemo. Then I had to leave my home, get an apartment near the U of Minnesota and stayed there for 4 months while I had a stem cell transplant. If you have been reading, you will know that this is an elderly cancer mostly men and mostly black. It is only 1% of all cancers but is on the increase.
I found out of one new female in our area tonight and know of one other and I keep in touch with her. She had a transplant about the same time as I did. After my diagnosis in 1999 my Mom was diagnosed with the same cancer in 2000. She fought as hard as she could but sadly passed away last April 25 so we are nearing the one year of her death. She was 73. We know that positive thinking is the key and when you have cancer your outlook on life is very different. I thought at first that I wouldn't see my sons through the next year and here I am 4 years later. I now have 6 grandchildren!! And I plan on being here as long as I can to see more of them and see them grow up. My now 11 year old said he told God he needed me too much and God listened. So I hope all well - and I must tell you that I too have T-9-11 problems and still have backpain. I was on pain meds for over two and 1/2 years but now am able to not be on them. I still tire very easy and am on total disability but am functioning well enough to take care of my home, 11 year old and do as much volunteer work as I can. I too have neuropathy in my feet from the chemo and there are days when it is very painful. I will be put on thalidomide if I fall into relapse. The main thing now is the ACS Relay For Life - we need to make all others aware of the need for continued research so we can find more answers to this dreaded cancer. I will check back again soon and see if there is any other questions I can answer for you. Take care and God Bless susi

jeand
Posts: 1
Joined: May 2004

Hi Shelley: My name is Jean and I am 66 yrs young. I was diagnosed in stage 3, in April, 2003. I was on Thalidomide and Decadron for 8 months and then had autologous stemcell transplant inn Feb. 2004. That was rough but am improving and take one day at a time. I have recently been able to work in my flower beds which was my goal for this spring. I have a lot of back pain and have lost almost 3 inches in height. I was hospitalized just this week for severe abdominal pain. Supposedly not cancer related (suspected appendicitis or diverticulitis) and will have a colonoscopy in a month to try to determine the origin of the nflamation. My dr. told me they considered me in partial remission. I think I am improving everyday. I would like to correspond with others with MM. I am a widow with 4 adult children. One daughter lives with me and is my caregiver when I need one. my email is : jean-doyle@charter.net if you would like to compare notes.

StrongGM
Posts: 1
Joined: May 2003

Hello All! I'm the daughter of a Mother, 62, who was diagnosed with MM in February 2003. I must say it has been a tough road for me and my husband (recently married in August '02). I never would have imagined that 2003 would be the year of so much anxiety, pain, and frustration. My Mother is in stage II of MM. She has been hospitalized twice because of weakness and low blood pressure. The oncologist informed me that this typical with this type of disease. Seeing my Mother so weak has really affected me and my husband. It's May and thank the Lord she's still here and remaining strong. At times she looks just like her herself. If it wasn't for her back pains - she would look like she did in 2002. I'm very surprised to read that even in stage III there's the blessing of being in remission. Unfortunately, my Mother is not a candidate for stem cell transplant at this time so she's taking her chemo orally. I've been told that her lifespan is 1-2 two years. Only God knows when he wants to take her home so I try to ignore what they (the doctors say) and just pray that she wakes up to see the sunshine, rain and clouds; hear the birds sings and just make the best of life despite her condition. I hope I can continue this communication because I need to let my Mother know that she's not alone and to continue to keep hope.

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