Greetings to my new friends:
It is hard to believe that one year ago something like multiple myeloma was not something I ever expected to "catch." One year ago I was 100% immersed in my job as the administrator of three rural hospitals in a small regional hospital system that had filed for bankruptcy and was looking for a buyer. Sure I had some back pain but that was from playing with my lovable and strong Irish Setter. Sure I would come home completely fatigued at the end of every day and sit idle every weekend to recover for the next week, but that was just job stress.
When my wife was offered a big promotion in her job last fall, we had to make a family decision and it came down to her job or mine. We decided that I would quit my job and we would move to take my wife's promotion.
The day after my last day at my job, I loaded my dog and my luggage into my small airplane and flew to Atlanta to meet M'Liss and do some house hunting in Peachtree City. Then we flew to Columbus to spend the weekend with our son, daughter-in-law and grandsons.
I was feeling pretty good when I took off for to De Ridder La to visit my sister. When I landed and taxied to the terminal I could see my sister, Anne waiting for me. I was excited to see Anne since I hadn't had the time to see her for over four years. Ii cut the engine, tossed my bags on the wings and let my setter loose.
My sister found me and got me into her car. When we made it to the the ER in the small town hospital the ER physician told me that I had a star burst compression fracture in my L-5 that penetrated into the canal. He told me that I needed to get to a larger hospital quickly and gave me a shot of a strong narcotic pain reliever. I was flown to Baton Rouge b helicopter. A neurosurgeon examined me and after some time came back and told me he had some pretty bad news. He opened up with the confirmation of the ER physician’s diagnosis, the he told me I had a tumor in my spine and it was probably multiple myeloma.
I spent the next 20 days in the hospital and in a rehab hospital and seemed to be on a trajectory toward recovery from the back surgery and toward treatment at MD Anderson for my myeloma. I had been discharged for about a week when something happened in my back again. Another pain. A spasm that rated a solid "eight." For the next week, I fought the spasms, especially at night. The pain turned out to be another fracture. My neurosurgeon found a fracture in my L-1. He advised me to continue onto MD Anderson.
The evaluation at MD Anderson confirmed the myloma. My myloma doctor told me that things looked pretty good for me and that I had made some good progress due to some predisone a a family practice physician had prescribed for my in DeRidder. He told me that the tests showed hemoglobin 12.2 grams, platelets 354,000, WBC 9.9 with 88% neutrophils. My hemoglobin was aproximately 2 grams higher than previously measured. My total protein was reduced to 8.2 grams, albumin higher at 4.0 grams, and there was a monoclonal IgA component of 2.5 grams, representing an approximate 50% reduction. Multiple other chemistries and electrolytes were normal. Uninvolved IgG was low at 184 mg, IgM at 5 mg. Free kappa light chains at 18 mg, free lambda was undetectable. My follow-up at MD Anderson was set for the following month. I went home on with prescription for high, intermittent doses of dexamethasone and return appointments for an evaluation by the stem cell transplantation team.
We left Houston on Christams Day, feeling thankful that my myloma was going to be treatable, but the flight home was very difficult. Movement was very difficult. I had to get around by wheel chair if I had to move further than 150 feet. Otherwise I needed a walker. We decided to go home to Tennessee. After a visit to my old primary care physician I filled him in on what had happened to me. He referred me to a spine surgeon in Lebanon. The spine surgeon found that I had fractures in my L-1, L-2, and L-3. He was also very suspicious that the instrument that had been placed in my back to stabilize the L-5 had moved out of place. He did kyphoplasties on the L-1, L-2, and L-3, but said he could not repair the L-5.
My back and my lack of mobility prevented my return to Houston. Thankfully, Nashville has two transplantation centers and so we decided to stay in Carthage. I just finished my first round of treatment of Velcade and dexamethasone. The second round starts the 21st of February and will be Velcade, Revlimid and dexamethasone.
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Re: Chip's Personal Story
Chip,
Sorry to hear about all the pain you have been going through. I wanted to let you know that I was/am being treated at Vanderbilt. I have to tell you that you are in good hands. The Drs, nurses, and rest of staff will take good care of you. Are you staying in Carthage? Or Nashville?
If you want any information concerning Vanderbilt you can email me offline, I would be happy to assist in any way.
take care,
Mary
Sorry to hear about all the pain you have been going through. I wanted to let you know that I was/am being treated at Vanderbilt. I have to tell you that you are in good hands. The Drs, nurses, and rest of staff will take good care of you. Are you staying in Carthage? Or Nashville?
If you want any information concerning Vanderbilt you can email me offline, I would be happy to assist in any way.
take care,
Mary
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Mary - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 11/07
- Age at diagnosis: 47
Re: Chip's Personal Story
Chip: We absolutely understand your pain, even though we've not had the same issues that you have. My husband has been in almost uncontrollable back-related pain, and only got relief after a Pain Management Specialist began injections of steroids. The plan is to burn the nerves, which should give him relief from most of the pain for 12 - 18 months.
He also wears a back brace when he's up and walking around . The PMS had us go to Lowe's and purchase one of their $14.99 support belts, and it does give support and seems to help.
In the beginning, his M-Spike was almost 6.0, and after 4 cycles of the Velcade/Dex it's now at 0.3. We are in Dallas at UT Southwestern, and he is going thru the rigors of Pre-SCT testing.
His story was much the same as yours - back pain & fatigue must be because he was "under the gun" trying to get a large home completed. Not until a back injury while playing golf, got no better, did he deem it necessary to go to the doctor ........and the rest is history.
Good luck with your treatments, and your pain.
Sarah (caregiver)
He also wears a back brace when he's up and walking around . The PMS had us go to Lowe's and purchase one of their $14.99 support belts, and it does give support and seems to help.
In the beginning, his M-Spike was almost 6.0, and after 4 cycles of the Velcade/Dex it's now at 0.3. We are in Dallas at UT Southwestern, and he is going thru the rigors of Pre-SCT testing.
His story was much the same as yours - back pain & fatigue must be because he was "under the gun" trying to get a large home completed. Not until a back injury while playing golf, got no better, did he deem it necessary to go to the doctor ........and the rest is history.
Good luck with your treatments, and your pain.
Sarah (caregiver)
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: Chip's Personal Story
Hi Chip,
sounds very similar to my partners story. He was in the age of 57in summer 2007, when he started to have horrible pain at his ribs and back. After a CT of thorax he was told he has cancer, they thought at first there were multiple metastases from a solid tumor. In our hospital at Frankfurt am Main (Germany) they soon found out he had multiple myeloma. Seems to be the same type as yours : IgA, Stadium III A, Light chains Kappa. Some of his ribs were broken, also L 3 and his kidneys were near to failure. He started with Velcade, Cyclophosphamid and Dexamethasone, three cycles, then got radiation to stabilize his lumba vertrebra, followed by auto- SCT. After he had recovered we had a really good time, he felt very well, so we could travel to Thailand for some weeks. In summer 2009 the multiple myeloma again showed, it is still there, He had a swelling at his cheek and problems with his back again. Started radiation and Revlimid. Since then there are always ups and downa, but the most important is - he is happy to be still alive and enjoys it most of the time. At the moment there is no need for any therapy and he has to go to the hospital only every two months.
I wish you the very best, good luck with your treatment, few side effects and long lasting remission
Caro
sounds very similar to my partners story. He was in the age of 57in summer 2007, when he started to have horrible pain at his ribs and back. After a CT of thorax he was told he has cancer, they thought at first there were multiple metastases from a solid tumor. In our hospital at Frankfurt am Main (Germany) they soon found out he had multiple myeloma. Seems to be the same type as yours : IgA, Stadium III A, Light chains Kappa. Some of his ribs were broken, also L 3 and his kidneys were near to failure. He started with Velcade, Cyclophosphamid and Dexamethasone, three cycles, then got radiation to stabilize his lumba vertrebra, followed by auto- SCT. After he had recovered we had a really good time, he felt very well, so we could travel to Thailand for some weeks. In summer 2009 the multiple myeloma again showed, it is still there, He had a swelling at his cheek and problems with his back again. Started radiation and Revlimid. Since then there are always ups and downa, but the most important is - he is happy to be still alive and enjoys it most of the time. At the moment there is no need for any therapy and he has to go to the hospital only every two months.
I wish you the very best, good luck with your treatment, few side effects and long lasting remission
Caro
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Chip's Personal Story
Dear Chip,
It is great that you have gotten a lot of information and have a plan in place. It really helps to reduce the stress - at least it did for me. I went to MD Anderson for a second opinion, and I found that very valuable. However, it will not work for me to continue traveling so far, and should I need more information, I left the door open with the physician I saw.
Last October I was diagnosed with multiple myeloma when I had a compression fracture of a vertebra, accompanied by much pain. I was fitted for a soft back brace with Velcro, and it helped a lot during the day but I didn't sleep in it. I had radiation of the vertebra and started on chemo, and with the treatment the pain diminished, and I no longer use the brace. I trust that as your vertebrae heal from the fractures and with the chemo that you find that your treatment will make a difference in your pain level.
I am very interested to hear about your experience in Nashville and their transplantation centers. I hope you will have time to share how that unfolds.
In early March I will meet with the transplant physician at Baylor in Dallas to plan my having an autologous stem cell transplant which I anticipate will be in April. I live in a small town 325 miles west of Dallas so I am hoping I recover quickly and won't have to stay in the area close to the Baylor center for 8 weeks. I feel confident in my decision, but the logistics are going to be a challenge and will take some planning as my husband still works full-time. So a new chapter awaits us.
I sent my best wishes for your recovery and good wishes for your family, including your lovely Irish Setter, who are undoubtedly your number one support system right now!
Linda Mc
It is great that you have gotten a lot of information and have a plan in place. It really helps to reduce the stress - at least it did for me. I went to MD Anderson for a second opinion, and I found that very valuable. However, it will not work for me to continue traveling so far, and should I need more information, I left the door open with the physician I saw.
Last October I was diagnosed with multiple myeloma when I had a compression fracture of a vertebra, accompanied by much pain. I was fitted for a soft back brace with Velcro, and it helped a lot during the day but I didn't sleep in it. I had radiation of the vertebra and started on chemo, and with the treatment the pain diminished, and I no longer use the brace. I trust that as your vertebrae heal from the fractures and with the chemo that you find that your treatment will make a difference in your pain level.
I am very interested to hear about your experience in Nashville and their transplantation centers. I hope you will have time to share how that unfolds.
In early March I will meet with the transplant physician at Baylor in Dallas to plan my having an autologous stem cell transplant which I anticipate will be in April. I live in a small town 325 miles west of Dallas so I am hoping I recover quickly and won't have to stay in the area close to the Baylor center for 8 weeks. I feel confident in my decision, but the logistics are going to be a challenge and will take some planning as my husband still works full-time. So a new chapter awaits us.
I sent my best wishes for your recovery and good wishes for your family, including your lovely Irish Setter, who are undoubtedly your number one support system right now!
Linda Mc
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Linda Mc
Re: Chip's Personal Story
I started the collection process and eventual transplant process yesterday with an infusion of cytoxan and all of the other drugs, masks and medical paraphernalia. I returned to the clinic today to have mt blood, and ins and outs checked, Everything was good. The nurse also showed us how to do the Nupogen injections, so we will be sailing on our on until Friday.
I'm glad that I've been lurking around this site, learning that the collect phase was nothing to fear, and for me that has been the case. So thank-you to everyone here who asks the questions and those who reply. A big thank-you to Mary O. a member of this site for her help, advise encouragement and friendship. Also praise to the nurses and physicians at the Vanderbilt-Ingram Cancer Center, they have been wonderful. I also want to give praise to my care giver and wife who has giver her all to me since I literally fell to this disease. Finally, all praise to the Good Lord who has open these doors along this path
I'm glad that I've been lurking around this site, learning that the collect phase was nothing to fear, and for me that has been the case. So thank-you to everyone here who asks the questions and those who reply. A big thank-you to Mary O. a member of this site for her help, advise encouragement and friendship. Also praise to the nurses and physicians at the Vanderbilt-Ingram Cancer Center, they have been wonderful. I also want to give praise to my care giver and wife who has giver her all to me since I literally fell to this disease. Finally, all praise to the Good Lord who has open these doors along this path
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Chip - Name: Chip
- When were you/they diagnosed?: 20 November 2010
- Age at diagnosis: 58
Re: Chip's Personal Story
I thought I would update my personal story since I just passed my fifth anniversary of my diagnosis on the 20th of November.
First, it is important for me to say to everyone who reads this that I am very grateful to the many people who have helped me to be alive and be reasonably healthy. I have been blessed with a wonderful wife who was and is my caregiver and companion on this journey. Finally, I am thankful to a loving and merciful God who gives me inspiration everyday and answers every prayer and need.
We moved to Georgia, and I transferred my care to Winship Cancer Center in Atlanta. The transfer was seamless. Normally, I see a nurse practitioner, and I am fine with that.
My IgA protein is starting to rise again, and my maintenance dosage of Revlimid has been increased from 10 mg to 15 mg. I take Revlimid for 21 days, then stop for seven.
Life has improved quite a bit since my SCT in 2011. I'm getting around very well. I drive and walk and can carry five or ten pounds fairly well. I still get occasional pain in my back, but it is nothing like it used to be, and I do not take any pain medications anymore.
First, it is important for me to say to everyone who reads this that I am very grateful to the many people who have helped me to be alive and be reasonably healthy. I have been blessed with a wonderful wife who was and is my caregiver and companion on this journey. Finally, I am thankful to a loving and merciful God who gives me inspiration everyday and answers every prayer and need.
We moved to Georgia, and I transferred my care to Winship Cancer Center in Atlanta. The transfer was seamless. Normally, I see a nurse practitioner, and I am fine with that.
My IgA protein is starting to rise again, and my maintenance dosage of Revlimid has been increased from 10 mg to 15 mg. I take Revlimid for 21 days, then stop for seven.
Life has improved quite a bit since my SCT in 2011. I'm getting around very well. I drive and walk and can carry five or ten pounds fairly well. I still get occasional pain in my back, but it is nothing like it used to be, and I do not take any pain medications anymore.
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Chip - Name: Chip
- When were you/they diagnosed?: 20 November 2010
- Age at diagnosis: 58
Re: Chip's Personal Story
My husband has just been diagnosed at age 58. Unexplained anemia, rib and back pain. SPEP showed IgA 1802 and urine for Bence Jones protein positive.
We have an appointment with the myeloma head at Sarah Cannon at Centennial Medical Center the first of January. I hope five years down the road we are as luck as you and your family are.
All the best to you.
We have an appointment with the myeloma head at Sarah Cannon at Centennial Medical Center the first of January. I hope five years down the road we are as luck as you and your family are.
All the best to you.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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