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A Patient's Blog: Time to Change the Rules for Treatment Plans?

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Hello!  My name is Pat Killingsworth, and I am a myeloma survivor and medical writer. 

I am excited about sharing my experiences as a patient and patient advocate. 

I have learned a lot since I was first diagnosed in the spring of 2007.  Looking back, I can see how difficult it is for a patient, caregiver--and even a patient's doctor--to anticipate what might be best in the future.

Initially, everyone involved tends to be focused on the here and now.  The priority is almost always to get a newly diagnosed patient's multiple myeloma under control. 

But while that reaction may be understandable, it doesn't make it right!

Doctors tend to be reluctant to design long-term treatment plans.  After all, if there is one thing that's predictable about multiple myeloma, it's that it is unpredictable. 

So when a patient asks, "Doctor, what comes next after this works--or doesn't work?" The doctor's response is almost always, "Let's take it one step at a time."

Again, even early-on this is a mistake.  Maybe not during the initial meeting or two.  But after induction has started, and everyone has a better idea about how the new patient's myeloma is responding, I strongly believe that is time to start developing a long-term myeloma treatment plan.

In a perfect world, this plan will be developed by not only your local medical oncologist, but a myeloma specialist, too.

Working together, a patient's myeloma team can create a treatment plan that takes into account a patient's quality of life and treatment goals.

More and more myeloma patients are living seven, eight, ten years--or even longer.  Decisions made during the first year of treatment can affect how a patient is treated if and when myeloma relapses years down the line.

Until next week, remember to feel good and keep smiling! 

Pat

26 Comments

I have to agree with you Pat re: long term planning. However, one need to remember that everyone's Myleoma is different. I began on Thalidomide and went all the way up to 300mg daily then down to 50 mg every other day. Then I repeated the increase to 200mg daily until it stopped working to control the M-Protein. That took 8 and 1/2 years. How? No one knows! Most medications work for only 2 or may be 3 years. I am now on Revlamid w/ weekly Dexamethasone which are working. This shows how difficult it is to do long term planning.

In speaking with fellow Myeleoma patients at my local IMF support group, each has a very different story of their treatment plan, or should I say, treatment situation.

I appreciate your comments.

I was diagnosed with MM in 2004. After stem cell transplant I took thalidomide for six months together with dexamethasone. Due to side effects, I discontinued the thalidomide. At that time I read about a study being done at M D Anderson Cancer Clinic using curcumin and began taking it and have been ever since. The MM is still in remission.

please tell me more about your use of curcumin. Do you mix it with olive oil? do you take capsules or just use tumeric on food or both?

Don, if you want to learn more about Curcumin and Multiple Myeloma, you should go to this link :

http://www.myelomabeacon.com/news/2010/02/17/curcumin-and-multiple-myeloma-preclinical-and-early-clinical-studies-are-promising-still-awaiting-more-clinical-evidence/

Hope this answers your questions

I am very happy to see that you have been living with myeloma for such a long time. It gives me encouragement.

Hi Pat.

Yes, doctors in general are horrible at drawing up long term plans. It's important for patients to not take a passive role and be aggresively seeking better options. I know how hard it is when life flips over, but that's where support groups, family and friends come in, to help push you through.

Nobody is perfect, especially overworked doctors.

Reiterating Sam's comment, "everyone's myeloma is different", sometimes you have to take it step by step. My numbers were slowly increasing in the 7 years after being diagnosed. I had no outward symptoms and felt fine and fit. So the Doctor and I decided to try treatment to bring the numbers down. After a year of Revlimid, Velcade and a dose of Doxil, were ineffective, I was told I wasn't eligible for transplant because my monoclonal protein was too high. So after a year recovering from the treatment, I am back to feeling fit and fine with high numbers, I just have to wait and see what happens ... for me it's unpredictable ... but my specialist at Mayo says the longer I feel fine, the less likely things will go astray ... we'll just have to wait and see.

Hi Pat,
I was diagnosed a year after you. As a very veteran psychiatrist, I can appreciate your emphasizing the long term over the immediate - it would probably help new patients have a greater sense of stability at a desperate time. But, I'd be less inclined to use words like "mistake" and "right" and "wrong", I'm afraid.
Best,
Harold

HI PAT, I JUST FINISHED MY GAINESVILLE MEETING. I LEAVE FOR CALIFORNIA WEDNESDAY. THANKS FOR THE BOOK. ANDY SNINSKY

I too agree with both of you. I did not know anything in the begining. I first used Dexamethesone 4 years, Then Revlamid/Dexamethasone 4 years. Came out of remission and was put on Cytoxin and Velcade for four cycles. Now on just a sub q injection of Velcade once a week for four weeks and off a week along with 40 MG of Dexamethasone every Monday.
In the begining my Dr wanted start Cytoxin but sent me to a specialist. He took a step back and recomended just Dexamethasone. What I did not understand when I was on Dexamethasone and Revlamid they only went to 25 MG. When I came out of that remission they both agreed to four cycles of chemo.
I cannot complain and they are the specialist so have gone with all their recomendations.

I was 28 when diagnosed in 2005. Clinicians should definitely stop to think about not only the short but also the long term consequences of their immediate & future treatment regimes considering that we as MM survivors have the potential for many years of living and that the first treatment tends to be the most potent. Most significantly for me, my first line of treatment (radiotherapy) did such damage that I was put into early menopause and now 7 years later a worse reality for me is not the fact that I have MM but that I may never have a child. A little early planning which would take but a couple of months including recommendation of a second opinion from a myeloma expert and more concern for both males & females of child bearing age with regard to their future fertility is a must. Just a bit of a tangent from this initial discussion.

I agree---I'm six months past SCT and trying to decide whether to to on Revlimid as maintance. last studies are showing significant improvements in outcome, but the FDA just added new warnings to Revlimid at to other cancer risks (3 times higher) and it seems to #1 cancer to occur is AML which my wife has been fighting for 3 years and I know I don't need that. I'm heading to Boston next week and will be asking many questions...

Everything I have read states that 4 months after ASCT you should go on Revlimid. If you don't (according to the studies) your Overall Survival is cut in half. There are side effects and chances we take with all the drugs we use, but from what I have read, the benefits outweigh the risks.

Hello Pat - In October 2004, I was diagnosed with Multiple Myeloma and also Amyloidosis where undesirable protein forms around the vital organs. This is often compared to the ameloid which causes Altsheimer's disease. This combination of diseases, I found out later, gave me about 12 to 18 months to live.

After 3 treatments of a cocktail called VAD, I was in remission. I was taking only Thalidomide as maintenance for 4.5 years after that when my oncologist stopped that. He told me I didn't need it any more. I was CURED !

Since mid-2005, I have led a normal life although my blood numbers etc. are low. Last summer I spent 5 weeks alone in England, Scotland and Wales where I camped in a 4-foot high pup-tent for 15 nights and made my own meals. I was driving for 23 days (2088 miles) alone in a 1953 Triumph TR2 with the top down for the last 17 days. Life is wonderful!

As for a long term plan, I had been restoring a Triumph TR3A for a chap in Toronto and I hired two friends to finish it under my direction. This project came out beautiful and I believe it saved my life by taking my mind off the cancer and the Amyloidosis.

There are not many oncologists who will declare "You are cured!"

Hi Pat
Great to read about your thoughts regarding long term treatments. I was diagnosed in 2007, had 2 stem cell transplants in February and May of 2008. Am not on any medications for MM. Have other medical issues that popped up, body not making red blood cells and iron stores without iron. Am having aranesp injections and two infusions for iron. I play golf, bowl and live each day as it comes. My anemia causes extreme fatigue, I sleep alot. I do ask what the future holds. Am told, "everyone is different". Thanks again to you and all who contributed to your blog. Great to hear the different views and treatments.
As for a cure, I have been told MM is an incurable cancer. I am a senior citizen and live life to its fullest.

When I read this article, the thing that came to my mind is that I have met people who, when first diagnosed, decided that they did not want a stem cell transplant and, thus, did not have cells collected. The thing that they fail to realize is that characteristics of your myeloma can change and the recommendation for stem cell transplant can be stronger when you relapse. In other words, even knowledgable patients don't always think beyond their current active myleoma phase either. Please, harvest.

I was recently diagnosed in March of this year. I had no symptoms. My family doctor did my yearly physical with the blood work. He called me back in a couple of days and wanted to redo the test. I went in and he reran the test. He then referred me to an oncologist and I had a bone marrow biopsy done as well as rerunning the test. I was initally put on Thalidomide and dexmethascone and warfarin. I took it for the month of March and on March 17th got hit with a terrific pain in my abdominal area and back. I ended up going to my chriopracter to unlock my muscles. I was then put on Revolmid and had the same pain after 4 days. I am now on IV infusions of Velcade and Doxil. I have not had any reactions to these. I would like to have a plan for the future but i guess we have to take each day one at a time. When the patient is female, i think there should be more efforts to help the husbands with information and caregiving tips. I am 63 and have always been healthy, so this came as a surprise.

amazing thoughts from all of you! i am a 'one step at a time' gal.... diagnosed in 2004, SCT in '06, never having achieved remission but i maintain an excellent quality of life. after 6 years i am having an increase in proteins which will lead me to Revlimid later this summer. i maintain an excellent relationship with my oncology team and i will say this: too much information at once was very overwhelming at first.... now i am already on the journey and i know the language and i can maintain very informative discussions with my team. i learned along the way....i know about the doctor's universal response of "let's take it a step at a time'... but in my life i am always putting the cart before the horse and now i realize "Small doses" work better for me!!! i want you all to know that every single comment i read here is informative. good luck to all of us!!!

Hello, I have been doing a lot of research lately as my husband (Jeff) was diagnosed with MM in July of this year. He is 57 and his brother was 61 when he died of MM in Mar 2012. His brother was not diagnosed until 2 months before he died as he never went to the Doctor. Jeff took the death certificate with him when he went for his yearly physical and his Dr said we have been watching this M spike for 2 years but never said anything. His M Spike was 3.4 at that time. That really makes me mad. He sent us to a quack who said he would do nothing but watch it.

A week later we went to SCCA in Seattle and found out Jeff was at stage 2. He has qualified for a study and is on Velcade, Revilmid, and Dex. Has been tolerating it well other than a rash, fatigue and confusion. After one cycle his M Spike is 1.2! He will have a total of 8 cycles and started the 3rd cycle yesterday.

In Nov we are starting the process for stem cell collection though he will not have a transplant at this time. Hopefully they can harvest for a couple of transplants.

With all this said I am trying to find out if anyone has a missing chromosome? Jeff is missing p17 53 and his brother was missing 13. I do not know exactly what all this means other than they say it results in poor prognosis. Is anyone missing the chromosome and how are they doing? Any tips for the stem cell harvest? We were planning a trip on Dec 26th to get out of the cold but not sure now that he will harvest a couple of weeks before then. We had the trip planned back in Feb long before we knew what MM was.

Any information that anyone has is greatly appreciated.

thanks
Kim

Diagnosed in June of 2012 velcade for four cycles interrupted by a lung cancer diag ,lune lung resection in oct.2012 sct April 2013 revlimid maintanance for last four months stringent complete remission I am cancer free after 15 months after diag my hope is 15 more years of the same. I feel great

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