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MM cancer

chemistry
Posts: 1
Joined: Jul 2009

My mother had flu about a month and a half ago ,then she started to feel very bad pain in her back and high fever she was taken to the hospital and they injected tranquilizer to her. She had high blood pressure and blood sugar which she never had. She was treated and blood pressure and blood sugar came back to normal. But after a few days she could not walk anymore ,in the hospital they started giving her antibiotics and MRI showed a toumor ( which they say can be infection ) by spiral cord. And now after blood test and bone biopsy one of the doctors say she has MM and only 2 years left.
Has anyone had similar symptoms? He says it is on stage 2 any idea??
And I searched the web different test must be done to confirm the results but this dr seems to be sure! Any Ideas? Thanks.

kareng7078
Posts: 2
Joined: Jul 2009

I had the flu in Feb.2009 While in Florida. Came home and was feeling better then the pain started it got so bad I went to th er. They ran test I was lucky another doctor looked at the blood work and suspected MM he suggest they amit me and run test. Our hospital is small and in need of doctors They have doctors from bigger hospitals come in And a Specilist in cancer came in and did a bone marrow biopsy and confermed MM I have been on Revlimod and Dexamethasone once a week and zometa once a month and morphine for pain I'm in stage 2. I had to go off the Revlimod because in interfers with the havesting I'm having done next month transplant to follow about 2 weeks later. I am scared but everyone seems to beso positive.I tire out easy and really have trouble with stairs.Have lost 35 lbs.I also have to get a Procit shot once a week when blood count is below 10. I can't believe they told her two years she should see someone else. Nobody has said anything to me as neg.as that.I have tomors but they haven't cause me to not be able to walk have a lot of problems wiyh stairs and alot of pain. Been having pain for over a year and nobody could figure out why I think they thought they I wanted pain pills well I did I was in pain. They wouln't give me any And I had to suffer and I did.Now I know what it is anyway and the pills help the pain.My father passed away with MM in 1994. He had it for 3 years couldn"t do chemo or radation it almost killed him but by the time he was diagnosed with MM it had started shutting down his kidneys so had to do the dialious time.and pain pills he was in a wheel chair the last two years.But he live 3 years with no meds for the MM and that was 15 years ago they have so much more out there now

Mammy
Posts: 1
Joined: Jul 2009

My husband was just diagnosed in April with MM. It was so scary at first. It seemed like it took forever to get the actual diagnosis. The not knowing and imagining the worst was awful.
I must agree with Karen, My husband's doctor has been very positive. He said that 10 years ago the prognosis might not have been very good but today there are alot of things they can do. My husband's is in the beginning of stage 2 also. He is on Thalidamide daily, Zometa once a month, and steroids once a week.

sunti1052
Posts: 1
Joined: May 2007

Don't lose hope. At age 52 I was diagnosed (March 2005) with a plasmacytoma in my spine and the diagnosis was the same - multiple myeloma. I underwent radiation treatments and chemotherapy. Then, had an autologus stem-cell transplant in Oct/Nov of 2005 and I am still here today! It's treatable. Good luck to your mom.

trainier2020
Posts: 1
Joined: Oct 2009

I have completed my treatment for MM. My SCT was on July 22nd at MD Anderson. On November 2nd I go back to MDA for a bone marrow biopsy and other tests to determine the success of my SCT. I have to admit I am a little freaked out, I don't want to go through another SCT. But of course I will do it...I think.

A little history. I am a 52 y.o. female, diagnosed March 11, 2009 with Stage III MM, with hemoglobin of 8.8 g/dL, proteinuria,a total serum protein of 9.3 with abnormal M-spike of 3.2 on SPEP, 390 mg of protein. The bone marrow biopsy revealed presence of IgA kappa monoclonal plasma cells of up to 50%. I underwent treatment with Velcade-based therapy, Velcade plus dexamethasone. Only 3 cycles of Velcade and dexamethasone with a good response and was then referred for stem cell transplant.

This has been a hard trek. I am single so the journey was solo. My children were very supportive but also very busy with their lives.

Post transplant, I am feeling a little depressed and anxious about my future. I always say it is what it is and just go on and deal with it, but some times it is very hard to keep the good attitude. I am by nature a very positive person so it comes naturally....HERE IS THE BIG BUT...I am feeling worn out, worn down and freaked out.

Tomorrow will be my 90-day mark...90 days post Stem Cell Transplant. I went back to work two weeks ago. It has been hard as I experience a lot of bone pain and by 3 PM I am ready to go home.

Does anyone know of a MM support group?

LOW's picture
LOW
Posts: 5
Joined: Oct 2009

Hi,

Sorry for the delay. My husband set up my account for me and this is the first opportunity I have had to sit down and log back in. This is just one small example of his total support for me which, in itself, is very healing. Our hearts and support go out to anyone who may be dealing with this disease or has a family member who is.

I agree with the others - please keep up the hope. So many advances have been made in recent years with research on our disease and many advancements have been made with treatment options. They're even beginning to talk about multiple myeloma more as a chronic condition vs. an incurable and ultimately fatal disease. They draw a comparison to diabetes -- as long as you stay on your maintenance drugs, the disease will stay under control. Of course, those of us who have had stem cell transplants, have other issues with our immune systems and will need to take precautions to protect from exposure to germs.

You are wise to seek a support group and I will share my experience with the amazing support I have received.

I was diagnosed at age 49 in November 2005 with Stage IIIA MM. My diagnosing doctor wanted to admit me to the hospital the next day and begin treatment with what was the standard treatment for about 20 years running. It was right around Thanksgiving and I asked if I could have a little time to research this and figure out what to do. She very reluctantly agreed, but told me not to take more than a very few days.

I didn't know where to begin. Most people had never heard of Multiple Myeloma. My GP certainly was not familiar with it. At the time, my husband and I had separate offices in our home. He got on one computer and I got on the other and we began desperately looking for any information we could find that would help us make an informed decision.

It didn't take us long. My husband, Sonny, stumbled across the phone number for the Support Line for the International Myeloma Foundation. They have a wonderful website www.myeloma.org. But, as a starting point, I highly recommend you call the support line. The number is 800-452-CURE (2873). We initially spoke with Nancy Baxter, and have called her on many occasions since when we needed direction. What a relief to find the support line. On that very scary weekend after my Friday diagnosis, Ms. Baxter was able to point us in the right direction to obtain information we needed. She explained various treatment options and provided us with names of some of the key physicians/researchers in the area of multiple myeloma. Ms. Baxter was able to explain some of the numbers to us and which key numbers required the most attention. I am not doing any justice in describing what Ms. Baxter did for us. She was an absolute Godsend. With the guidance from Ms. Baxter, we were able to settle down a little and conduct our research and make an informed decision. We did not choose the "bleeding edge" treatment decision, but went with the new form of treatment vs. the treatment that had been followed for about 20 years. I'm so glad we chose that option and it has since become the new standard... That being Thalidomide and Dexamethasone. The Thalidomide is a targeted therapy vs. the old form CVAD chemotherapy. It's not nearly as harsh on the body and can be taken at home.

After doing the research and having a leaning on the type of treatment we wanted to pursue, we still went for second doctor opinions. Ultimately, I chose MD Anderson in Texas for the stem cell transplant and MD Anderson in Orlando for my local treatment.

I could probably write a book here with valuable information. I can only speak from my own experience, but I am happy to share my experiences with anyone. For now, I will focus on support. In addition to the International Myeloma Foundation (IMF) mentioned above, the Myeloma Research Foundation has a good website. The IMF has a quarterly newsletter which is very informative. If you speak with support, or log onto the IMF site, they will provide you with a packet of information which explains the various drugs and conditions regarding myeloma and allow you to sign up to receive the newsletter. The IMF also sponsors patient seminars around the country. I did not attend one until more than two years after my diagnosis. I wish I had gone sooner. The information and support from other patients was invaluable. Also, they have physicians from around the country give seminars which helped to broaden my knowledge beyond what I was getting from my local doctor and internet research. My sister attended with me and I think the seminars allowed her to get first hand knowledge and to know that I was not hiding anything from my family regarding my condition....that there truly was hope for a very long life with the disease.

I heard something recently which made a lot of sense. If you read statistics on the disease you will still see and hear a lot that the average life is 5 years. REMEMBER, that is an average, and we are not average. We should expect to be in the top numbers, not the bottom numbers which contribute to a lower "average". And, more importantly, I heard that the numbers for average life are based upon statistics from people who have died. Since people are now living with the disease so much longer, and are still living, the numbers for the "average" have not yet caught up with reality.

We did not have a support group here in Orlando when I was diagnosed. But another MM patient diagnosed around the same time, sought support from IMF and decided to form a group. The IMF has assisted with our getting a local group. It has provided a great deal of information for us. Our local leader has arranged for some of the top physicans in our area to be presenters at our monthly meetings. They discuss whatever topics we are interested in (e.g. how do we interpret our test results). In a few short years our group has grown from about 5-8 to about 30. The IMF will know if there is a group in your area. If there is not, I'm sure the IMF and/or our local leader will be happy to talk with you about how to form one.

Finally, there is great book that helped me just after my diagnosis. It is 100 Questions & Answers about Myeloma by Asad Bashey, MD, PhD and James W. Huston. It should be available in the library of your oncologist's office/hospital for checkout, or you can buy it online. The book explains this disease in layman's terms which are easy to understand.

I mentioned at the beginning of this post, that my husband and I initially spent time desperately researching this condition in order to make decisions. While my nature prior to the diagnosis was to know everything I can and then make decisions, that is not how we continued this journey. After the initial decision for the type of treatment to pursue, we have not made ourselves crazy with research. I am a woman with very deep faith, and I very quickly decided to just turn this over to God. What a blessing that was. We still try to stay knowledgeable, but we don't make ourselves crazy with research. I have enjoyed such peace since making the decision to just turn this over to the Lord. This has been a very interesting journey, and my husband and I would both say that so much good has come from this. We have learned to "live" every day and have enjoyed so many blessings along the way.

Sonny and I will be happy to help anyone however we can and to share our journey. Just ask. We will try to check in with this site periodically to check for new posts.

LOW's picture
LOW
Posts: 5
Joined: Oct 2009

I wish you the best when you get your results on November 2. My physicians informed me I would probably be quite fatigued for about 12 months after my stem cell transplant and they were right. I went back to work after three months, but only part-time, three days per week. Even that was tough for me for quite some time. I assume your blood counts are still low and anemia contributes to the fatigue.

I noticed that you go to MD Anderson. MD Anderson in both Texas and Orlando have some excellent patient programs to help deal with our side effects, including nutrition, fatigue, fitness, yoga, etc. All but yoga are free and worthy of consideration. The brochures and class schedules are usually posted with other patient materials.

I was very fortunate to have a private disability policy and an employer who was very generous in allowing me to continue part time. I have heard that others have gotten social security disability without too much hassle. Brochures indicate that Multiple Myeloma is listed as one of the qualifying conditions. Also, the brochures indicate that a stem cell transplant qualifies for one year of disability following transplant with any additional time to be based upon ability to work.

I have pretty significant bone damage and must take a pain pill twice a day. The pain pill did not affect my ability to work or drive (but the back pain prevented certain types of work).

I ultimately asked my doctor to prescribe physical therapy to help me get active again and to help strengthen my back to help with the pain. I still have back pain, but the pain pill takes the edge off.

Were you diagnosed as Stage III A or Stage III B?

I wish you the absolute best with your upcoming results and I'm happy to help in any way I can. God Bless!

grammychap
Posts: 1
Joined: Dec 2009

Hi--I am new to this site also. Was diagnosed with MM in late June 2009. I have been on velcade, revlimid and dexamethasone ever since. I am now waiting for the University of Michigan to contact me about a stem cell transplant. Since you have gone through this I was hoping you would let me know what happens during the transplant. Any news would be greatly appreciated as I am quite nervous.

mm40irish
Posts: 3
Joined: May 2010

hi I was diagnosed with mm August 05 the para protein levels were at 94% and i had extensive bone damage to back which caused severe pain i had imediate chemo steroids and then in begining of 06 I had auto transplant thankfully it went welll without much complications they have excellent medication for sickness the fatigue was hard 2 put up with but it did eventually fade away. I was very carefull with my hygine routine and limited my visitors to 3 which I think helped.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

My wife is a MM survivor. She was diagnosed in November of 2005. I found this site when searching for my recent diagnosis of Prostate Cancer.

I have printed out the entire thread from this conversation and my wife will be along shortly to share her experiences and knowledge. She has received multiple chemo protocols, including induction and maintenance, radiation on her shoulder for a suspicious activity and stem cell transplant.

She is very knowledgeable about the disease and treatment plans.

Sonny

LOW's picture
LOW
Posts: 5
Joined: Oct 2009

This is just a test message to begin conversations about MM.

Lynn

LOW's picture
LOW
Posts: 5
Joined: Oct 2009

Trying to make sure the picture works.

Lynn

Orange007
Posts: 6
Joined: Nov 2009

I was diagnosed with mm in Feb of 2007. Untreated I would be gone now and thought the world was coming to an end. But there is treatment and it is a very controlable disease. Years ago, they would cut me loose and said goodbye. At 56 I thought they were nuts at the time and felt pretty good. I went in for a normal physical, there were some odd protein spikes and referred me to a local hematologist and then to West Penn in Pittsburgh, and see a specialist there. I did the thalidomide, dexamethasone, zometa thing, then an autologous stem cell transplant in January of 2008 and came out OK but there were some mm spikes a while later, so did another transplant in May 2008 and I'm doing fine. In remission now and feel pretty good. There are ups and downs but you can get through it. Oh, there are changes, but it's not the end of the world. TODAY IT'S TREATABLE. Years ago, they didn't give you much hope. --- I even read one article that when this guy got his transplant, some of the stem cells repaired damaged cells in his heart, and even it is normal now.

You are in my prayers.
--Dave--

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

"I heard something recently which made a lot of sense. If you read statistics on the disease you will still see and hear a lot that the average life is 5 years. REMEMBER, that is an average, and we are not average. We should expect to be in the top numbers, not the bottom numbers which contribute to a lower "average". And, more importantly, I heard that the numbers for average life are based upon statistics from people who have died. Since people are now living with the disease so much longer, and are still living, the numbers for the "average" have not yet caught up with reality. "

-LOW

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I agree with this statement here. And besides people react differently to their disease and treatments. I've been reading this guy's blog for quite some time now and his stories are very inspiring. He was diagnosed with MM back in 2003 he didn't even have SCT and he is still alive until today, he's beaten the "average" and "median" survival numbers of published papers

you can even read his full treatment regiments since the beginning of his DX
http://myelomahope.blogspot.com/

doublehandful
Posts: 5
Joined: Feb 2011

Have you went for a second opinion on the diagnosis or the staging of this cancer, dont give up and except this in my eyes being given two years is a long stretch and a lot can be done to fight this in that amount of time, My husband also has Multiple Myeloma was treated and now two years later its starting to surface again,chemo to come soon again,Please if you havent already check with another Dr about this,sad to say but some Drs give up to soon on Cancer Patients.....

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