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Want to talk about Multiple Myeloma: Anyone else?

Posted by @frazer1 in Cancer, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

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Posted by @bonniecanby, May 21, 2012

I'm dealing with the same. I am trying to get an appointment at mayo. I would give anything to get a strait answer. bonnie


Posted by @mikegordong, Jul 1, 2012

I discovered I had MM last July. I have gone through chemo, radiation twice, and a stem cell transplant. It will probably be a year before I am feeling closer to normal again, but that will be a new normal. I will probably not be as active and healthy as I once was, but I should feel pretty good during remission. There is still fatigue, and back pain, but life is much better pain wise that it was. There is drepression that hits me since I was so active and now not so much. Hopefully this will go away and I can enjoy life close to what I had. Hope this helps.


Posted by @blessed57, Jul 10, 2012

A stem cell transplant or bone marrow transplant is something i need info on. Please tell me about your experince.


Posted by @khnielsen, Jul 29, 2012

Dear Frazer 1 (and any other MM patients, family members, and caregivers),

I am a 58 year old woman who was diagnosed with Multiple Myeloma on June 15th, 2000, only three weeks after graduating with my Master's degree in Counseling (at age 46). I was in the later stages of the disease: I believe Stage B4 would be the correct term? My skull, spine, ribs, upper arms, pelvis, and femurs had tumors. I seriously don't know how I managed to work 20 hours a week and go full-time to graduate school and STILL graduate with a perfect 4.0 (simply bragging here, folks!)

The main point of my reply is the date of my diagnosis....JUNE 15th, 2000... over TWELVE YEARS AGO. And, after having having a double "mini" transplant (my own stem cells and my sister's stem cells) at Fred Hutchinson Cancer Research Center in Seattle, I am STILL IN REMISSION. More good news: last June I went to a reunion weekend at "The Hutch" as we Hutch patients call it, and I met a woman who had had a FULL stem cell donor transplant and SHE was still in remission after FIFTEEN years.

When I was diagnosed in 2000, the blankety-blank hematologist/oncologist (now HE is another other story) informed me I had only eighteen months to two years to live. I wasn't willing to accept that so I started making phone calls to the nearest big medical centers (not being close to the Mayo Clinic). One call led to another and I found out that I had a lot more options than I thought. M.M. wasn't the "terminal" cancer I had been told it was. Yes, there is no specific "cure." But at least I had a chance.

What to depends on the specific treatment, on your individual body, and your attitude...and (I can't believe I'm typing this) prayer. Research has shown that patients who were prayed for had statistically significant improvement over patients who weren't prayed for...and these patients were not aware they were receiving organized prayer.

NUMBER ONE: YOU MUST ABSOLUTELY GET ANOTHER OPINION and ADVOCATE FOR YOURSELF. iF you are too ill and/or overwhelmed to do so, assign tasks to your family and friends...doing something for you will aid in their feeling helpless and out-of-control. For example, my brother took care of all the research for me, since "chemo brain" reduced my computer skills to a big fat zero.

NUMBER 2: You need to talk to your oncologist or G.P. about being on blood thinners. It is part of the recommended treatment but one that my blankety blank oncologist didn't bother with and it almost killed me. M.M. patients throw clots. Clots cause pulmonary embolisms. P.E., can kill a person. Watch out for the blood thinner cumadin (warfarin)...I had real problems with it working not enough and then way too much (another near death experience). The "Hutch" put me on daily Lovenox shots, which worked much better with my M.M. body.

NUMBER 3: HYDRATION!!! HYDRATION!!! HYDRATION!!! The Hutch recommended 3 litres of fluids a day (that includes coffee, tea, watermelon, whatever). I couldn't manage to do anywhere near that amount it orally, so for almost two years (due to complications) I had IV. fluids using my central line. I went through 4 months of V.A.D. chemotherapy plus the transplant chemo regimens. Thanks to the fluids, my kidneys are normal! Even though I still need to take meds for other cancer related side-effects (like Addison's Disease) my kidneys are handling all of them! NOTE: My caregiver was a hospital respiratory therapist, very experienced, and she went to war for my fluids. I'll never be able to thank her enough.

#4 Diet: Yes, I tried the super healthy cancer diets and vitamins and naturopathic supplements. They simple made me throw up. And the nutritionist at the Hutch did educate me on good nutrition, but I was just one of those patients who threw up at the blink of an eye. I got very good at it, and could even knit and barf at the same time! Hey, you HAVE to develop a good sense of humor if you don't already have one. The nutritionist finally said, "Eat anything, whatever you can keep down, and don't stress about it."

#5 Exercise: IF YOU DON'T USE IT, YOU'LL USE IT. Even one or two days down can cause muscle wasting (and blood clots). I tried to walk as much as I could...1/2 to one mile almost every day that I wasn't in the hospital, and then I walked the halls if I could summon up even an ounce of energy. I used a walker, which helped support my back. It was an exercise in courage as well, as it was the last thing I wanted to do. The pool was out because of the transplant issues and central lines.

#6 Support: I tried the local women's cancer group, but I was the only one there without breast cancer. No one could even relate. I didn't even get to talk to and MEET anyone else with MM until over a year after my diagnosis, when I started a support group myself after being discharged from the Hutch (The transplant program is out-patient, but you have to be in the area, within half an hour of the clinic and hospital, and my transplants took about 8 or 9 months.)

That being said, finally getting some support, getting some questions answered, and being able to GIVE support to other patients, was so very, very helpful.

I'm not going to kid you. The M.M. journey is long and arduous...that's the truth. There is no pink ribbon for us, no M.M. "month." (M.M's ribbon is burgandy--not a widely known fact.) While I would be happy to tell you more about my personal experience, side effects they didn't tell me about (or I didn't remember or hear), and the length of time the healing process can take, it would only be that...MY experience. Everyone is different. "It depends" is a phrase you will hear again and again. Just know that I am happy to be available to M.M. patients who are just beginning their journey with this weird disease, or who just need another M.M. survivor to talk to. I am grateful for my counseling skills and grief therapy training as they helped me manage my healing process with a positive attitude and a grateful heart (or so I've been told). And, while general cancer support groups have their place, M.M. is a unique experience. Check with the M.M. Foundation and find a support group close to you. Not a support group person? Feeling too ill to make it to a meeting? Online support and informational telephone "conferences" are also available. Thank Heavens for the Internet!!! And if you would like to message me with questions or you just need to vent, I would be happy to offer anyone (patients, caregivers, family members) the support I so dearly wished someone had offered me and mine way back when.

Stay positive, laugh, and learn to knit or meditate (actually knitting has been found to have the same beneficial effects as meditation)!!!


Edited: 05/11/2016 @ 6:09pm

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Posted by @mikegordong, Jul 31, 2012

Thank you for the insite. I am going to support groups and counseling. Trying to exersise daily, but Phoenix in the summer, walking is out.


Posted by @islander123, Jun 17, 2012

I have been diagnosed with MM stage 1. I am considering treatment at Mayo Clinic.
The challenge is that I live in CA. If there are any out of town folks who have been treated at Mayo I would very much like to hear the pros and cons that you experienced and how it worked.

Edited: 05/07/2016 @ 5:11pm


Posted by @scmsable, Fri, May 6 at 12:14pm CDT

I have had active myeloma for almost 2 years. I am fortunate to live in Palm Springs where the Eisenhower Medical Facility is located. They have the best care in southern California. I am in stage 3 but my numbers seem to be stabilizing. The best part of going to Eisenhower is they have their lab work done with Mayo, even the weekly draws are analyzed by Mayo even though the equipment is here the doctors are at the Mayo CLinic. Great to have both so close, all the best. Steve


Posted by @colleenyoung, Fri, May 6 at 12:19pm CDT

Welcome to Connect, @scmsable. Besides the weekly monitoring, are you also receiving active treatment?


Posted by @scmsable, Fri, May 6 at 1:10pm CDT

Yes, I do chemo twice a week for the rest of my life. I hope to get to the point that I can take pills and not have to go for infusions. My major problem is the brain fog and lack of energy but I am in no pain at this point.



Posted by @colleenyoung, Fri, May 6 at 6:10pm CDT

Ah yes, brain fog and lack of energy - 2 common side effects of cancer treatment. I bet @fundytide @julied838 can relate. They too posted about brain fog and fatigue lately.

My colleague Sheryl M. Ness @smness, patient educator at the Mayo Clinic writes a great blog. Here are 2 posts about coping with brain fog
and fatigue

I'd be interested in hearing about your strategies.

Edited: 05/06/2016 @ 6:10pm


Posted by @user_ch3a1e07f, Sun, Jul 3 at 6:32pm CDT

I did go to a Dr. James Berenson in LA (Beverly Hills). He has been specializing in MM for 30 years. I am going to Mayo now and
so far it's been a great experience but I do live in AZ. It might be worth it for you to get a second opinion with one of the MM specialist
at Mayo Az. I would recommend Dr. Fonseca very highly. The specialist quite often agree to send your regimen to an Oncologist at a
clinic close to you for the treatment. They coordinate your treatment.


Posted by @lisa54, Sun, Jul 3 at 8:17pm CDT

thank you


Posted by @user_ch3a1e07f, Fri, May 6 at 10:43pm CDT

Do you have a multiple myeloma group?


Posted by @mamaellie, Sat, May 7 at 11:25am CDT

I am looking for the same. Maybe we are the first 2.


Posted by @bjsdancer, Sat, May 7 at 12:29pm CDT

My husband has myelofibrosis anyone else have this disease?


Posted by @colleenyoung, Sat, May 7 at 5:22pm CDT

Welcome @user_ch3a1e07f, @mamaellie and @bjsdancer. @scmsable recently also joined Connect. I moved your messages to this discussion thread, so that we can build a multiple myeloma group with past and new members.

Let's start with introductions. Why don't you tell us a bit about yourself? When were you diagnosed? Are you in treatment? Anything you wish to share.


Posted by @totopeg, Fri, May 20 at 12:26am CDT

Hi Colleen. I am located in Piedmont NC and have treatment at Wake Forest Baptist Cancer Center. I was diagnosed with MM in August 2013, almost 3 years ago. My NP was actually the one who did a lot of research and blood tests and decided I need to see a hematologist. I thank God for her every day. My bone scan showed several tumors in different areas of my body: skull, hips, femur and ribs. I was started on Revlimid and dex, tried to do stem cell transplant at Duke. That didn't go well. I ended up in the hospital with multiple infections and kidney failure. All my docs decided I was not a good candidate for stem cell transplant. I have been hospitalized several time for UTIs, pneumonia and bronchitis due to poor immune system. A year ago, I was started on Velcade injections every 2 weeks along with dex. My last hospitalization was May 2015. YEAH! Because my blood work has been looking so good, my doc is considering reducing the Velcade to every 4 weeks for a maintenance dose, with close watch on the numbers. I do have a Zometa IV every 4 weeks for bone health. There is of course the brain fog (which is so embarrassing and aggravating), along with headaches, back pain, and low energy. But, all in all, for having the big "C", I do pretty well. I am blessed with wonderful family and friends. It could definitely be worse.

Edited: 05/20/2016 @ 12:29am


Posted by @lisa54, Sun, Jul 3 at 5:00pm CDT

how do I get on the MGUS support group board???


Posted by @colleenyoung, Sun, Jul 3 at 5:13pm CDT

Hi @lisa54, the MGUS related discussions can be found in the Cancer group here:


Posted by @larryfairtax, Tue, May 10 at 2:36pm CDT

Looking at the posts for Multiple Myeloma I see there is that as a whole, not much activity there.
What is going on with trials at Mayo and how can I find out what I might be able to participate in?


Posted by @colleenyoung, Tue, May 10 at 3:11pm CDT

Hi @larryfairtax,
Here is a list of the currently open clinical trials for multiple myeloma at Mayo Clinic

You are the 5th member who recently joined Connect looking for a group to discuss Multiple Myeloma. I moved your message here so that you can connect with the others. It only takes a few people to get the activity going. Why don't you get us started and tell us a bit more about yourself. When were you first diagnosed with MM. How are you doing today?


Posted by @lisa54, Sat, May 28 at 7:35pm CDT

I was a sick child with lethargic issues and bloody noses. I would drift off and not remember things. At age 18 I was diagnosed. I lived a very normal life till pregnant in 1988. Anemia was big and a hard task to shake. In 2012 the Roger Maris Cancer clinic said I was jumping on the scale of were I was at. My numbers in blood tests were off the chart. I changed my diet. Got better. 2014 I got ill again and went through lots of tests including bone marrow. It has affected my red blood cells to the point I need iron infusions or supplements to keep the anemia under control. Fatigued and in bed a lot. My immune system is wore out and I get viruses easy. Other than that I live a great life.

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Posted by @lisa54, Sun, Jul 3 at 4:56pm CDT

I go to Roger Maris and live in Moorhead. Are you still going to Roger Maris, may I ask. Would like to chat with you.

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