Pat's Place: Having Multiple Myeloma Isn't Simple — It's Hard!
Having multiple myeloma isn't simple – It's hard! Not only do you have cancer, but you also have a dizzying array of treatment options available to you. Additionally, it doesn’t just affect your health–it can affect just about all aspects of your life.
First, you and your caregiver need to decide where to go for treatment. Do you travel across state lines to a large, regional or national cancer center that specializes in treating myeloma? Or do you pick a medical center closer to home?
What about insurance? Cost may ultimately determine where and how often you are treated. Are you sacrificing quality of care for financial considerations?
How do you know which therapy option to choose? Do you start induction therapy and then proceed immediately to transplant? Or do you wait and watch and delay your transplant until later.
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How long do you take bisphosphonates like Aredia (pamidronate) and Zometa (zoledronic acid)? If your myeloma is stable, do you reduce the frequency of your bisphosphonate treatments, or discontinue them all together?
How do you plan for the future? Median life expectancies of people with multiple myeloma are heading in the right direction. Good news, I know! But it can make it difficult to budget and plan.
Multiple myeloma is close to being considered a chronic disease. Living a long time with a serious illness presents its own set of challenges.
Currently, once approved for Social Security Disability, multiple myeloma patients often continue to receive disability payments until they die. But as myeloma patients live longer, will that policy change? What then?
It isn’t easy holding down a job when you need to take time off regularly for tests, to see doctors, and to receive treatment—or if you are in constant pain.
Pain management can be difficult for the majority of multiple myeloma patients with bone involvement. Working can be difficult or downright unsafe for those taking high doses of prescription pain medications.
Here is another unfortunate reality: Long term survivors soon learn that family, friends, and acquaintances lose interest and are less available to provide help and support as time goes on. When a person is first diagnosed, friends and family often make earnest offers to help with housework, transportation, or cooking. But as the real life drama subsides and everyone settles into a routine, that help can start to dry up—whether you continue to need help or not.
Let’s stop here. I’m sure we could easily come up with a number of additional challenges. It is easy to identify the challenges and disappointments presented to those living with multiple myeloma. It is more difficult to begin to resolve and solve them.
That is where I hope to help—even if just a little. For the next few weeks, I will be writing a series of articles for my column specifically designed to help multiple myeloma patients better plan and organize their lives—and maybe even help solve a specific problem or two.
Until then, feel good and keep smiling! Pat
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at
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Bravo, Pat! It's good to know that we have a motivated man pounding the proverbial pavement who knows exactly what we're going through. In May, one of my physicians at UAMS, Dr. Nair, said to me after I shared with him that there were those of us trying to tell others about Myeloma in meaningful ways, 'I may be a Myeloma 'expert' but I do not know what it is to have Myeloma. It's important that the world hears and benefits from both of us." Pat, thanks for doing a great job on behalf of all of us MMers and those souls to follow in our footprints in the future. May their journeys be ever easier than ours! Sean
Thank you, Sir! You made my day- Pat
Pat,
I have been living with myeloma for 9 years and after having some long stable periods now into relapse 2. When it arrived I had to face an unfortunate reality that you write of. “Long term survivors soon learn that family, friends and acquaintances loose interest…….etc”.
This survivor had to get back into fighting and survival mode again, cope with my medical and physical symptoms, dig out all my survivor skill notes of previous years and start over again. My blog helped there, practise what you preach! It was when I was re-establishing “team Sid” that your unfortunate reality arose.
I have an adult family; except for my wife my family is number 1 support. They admitted that they had become blasé about my myeloma. They did say seeing Dad healthy for so long that the consequences of myeloma weren’t in their thoughts much. A good heart to heart talk with each individual on the reality of my myeloma future put us all back on track. I told them that after recent treatment and remission the remission periods were now very small, treatment was failing. Convention showed that I was now beyond the halfway point of my myeloma life. My best hope lay in treatment not funded in New Zealand, I was fortunate to be accepted for a clinical trial using one of those treatments.
Similar to friends and acquaintances, some had moved on, new friends had arrived. The key word was communication, explaining my new circumstances, my new wants and needs.
Pat, you have raised some good future topics for “Pat’s Place” (love that name) and made me realise that long term survivors do have some different challenges to the newer patients especially now that the new generation treatments are giving us myeloma survivors a longer life expectancy. The long term problems of treatment side effects is one of these. Another is one you have mentioned before, the decisions to be made when treatment fails. Employment for the older person is another.
Let’s not forget that we are not always in treatment, we have periods of remission and we can often be leading a normal life. That’s worth celebrating.
Sid.
Sid-
Hello in New Zealand! The Web is an amazing thing. So is the fact you are still alive after 9+ years. I'm so glad! I read about some of your issues on your blog. No one has a template for your situation--you have outlived the averages! Thanks for sharing about how difficult it is to get friends and family "back in the game." Hard, hard--especially when you are living with your myeloma. Please take care and good luck from all of us here at The Beacon! Pat
Hello Pat~~ I am very impressed with your Myeloma Beacon column and have been reading it for the past month. You have a real knack of hitting the topic on the head, and I relate to all of them for I have had Myeloma for the past 8 years. Unfortunately my 10mg of Revlimid has started to fail after 4 years, and I have now relapsed. I have just had a double dose of Cyclo, with all the nasty side effects, and am facing another round of double dose next month -- not a very happy prospect. My friends and family see me as back to square one, near death, and don't know how to cope with it. I fear more the option of transplant which is where this is all heading. I would much rather having another 'novel or new' drug treatment and take my risks with that. As you said, there are so many options these days, and having lived through many of the treatments its hard to know which way to go when one reaches the next brick wall. No one can tell with any certainty, and those of us who read all the medical screeds don't know any more than the doctors who are trying to do their very best. I'm asking for a new drug and hopefully that will occur. Who knows, maybe it will be the one that will make the difference!! Best wishes, Cath
PS -- it was great to hear that Sid is still with us -- we met when he was last in Australia. I do hope that the new drugs work for him too!!
So sorry to hear about your relapse. My myeloma is also starting to creep back on my 10 mg Rev dose after over three years. Stable for the time being. Did you try upping the dose and adding dex again? I know patients who have delayed making major therapy changes that way for up to a year. Are there any drugs we write about here you can't access in Australia? Rev/Vel/Dex is becoming the gold standard here. Carfilzomib and pomalidomide soon to follow- Pat
great and i look forward to your reports. last time we were in contact i was spending some time in pawley's now i am spending a week in atlanta. the beachs of sc are easier to walk than the hills of north georgia. i cope by walking every day and swimming several times per week. and since i can not swing a golf club due to a torn rotator cuff when i am around a golf course i will walk the course early in morning and visualize hitting shots. it may sound crazy but i find that it helps keep my brain active where as my body can not respond as it once did. and believe it or not, i am always even par or better.
jim
Hello again, Jim! I was a good golfer, but my wife doesn't play and it takes so much time... I also have limitations in how hard I can swing--and the neuropathy gives me the "yips". It is almost impossible for me to putt! Interesting you mentioned walking the course. I am much happier walking a course now (no clubs to throw!) than before. A bad game wrecked my day. Now I enjoy the birds, trees and green--and here in Florida a gator or two in the water hazards. Take care and good luck! Pat
hi pat.
so happy to have found you! so much of the information on the internet about mm is so dated in light of recent developments. your information is current; critical with the rapid advances in research and therapy. you replied to a poster, 'you made my day.' well jim, you made my week! please keep doing what you're doing...
be well.
best,
lisa
Hi Lisa-
I'm glad new readers are going back to past columns like this one! E-mail me anytime with questions, OK! Pat@HelpWithCancer.org. Glad to help- Pat
Hi Pat,
I love your column. I'm new to the Myeloma Beacon and just posted my story last week. I was diagnosed last year on the 4th of July at the age of 44. I never even heard of Multiple Myeloma before I was diagnosed. I have undergone 5 weeks of radiation to shrink a tumor in my lower/pelvic area; 6 rounds of DT PACE, 2 rounds of high dose and 2 bone marrow transplants. I just completed my 200 day check up following my 2nd bone marrow transplant and all my numbers are finally recovering. I have a Complete Stringent Response and currently on the maintenance drug Revalamid. I too believe that taking this maintenance drugs is a personal choice and I have met MM patients that have chosen not to take a maintenance drug for the rest of their life and some that have chosen not to have bone marrow transplants. As I'm writing this I'm receiving my second treatment of Zometa. I have such severe pain,especially in my feet and hands where I have the side effects of chemo, neuropathy. I had to give up my career of 16 years because I'm unable to drive because of the narcotics. I wanted you to know that I look forward to your column and I'm currently catching up on the columns I have missed. Please keep up the good work...its hard sometimes to find a person who completely understands what you are going through!
So sorry you have to join our "exclusive club" and endure all of this. I'm just glad I can help--if only a bit. Thanks for reading! Pat
Hi,
I was diagnosed in December, 2010. Stage I-II. I've been receiving treatment (IV Chemo) Velcade, Doxil, Zometa since January 3, 2011. I've been told that my treatment is in preparation for an autologus stem cell transplant.
I've experienced some of the comments above from family and friends. I think because you're receiving therapy and you look the same act the same and from the outside it all appears as if you're not suffering from this disease, they begin to believe your cured. The reality is you have to continue with this new life style.
I'm also in a financial bind which keeps me up. I lost my job and have no source of income. My Cobra benefits are coming due and I can't pay them. I've applied for Social Security Disability, but may have to wait 120 days for approval. I've placed claims with two life insurance companies for Accelerated Death Benefit. One company has denied it twice on the basis that my life expectancy is greater than 12 months. The other is currently reviewing the claim. I find it difficult to except the decline as we all know this is an incurable disease, with a limited life expectancy. I'm not throwing in the towel by no means, but what do I do for income now.
Jeff
Jeff-
You are so right about how others perceive us... Financially, that is one of my concerns--that SSDI will start to look at us like your life insurance company does. No help because you aren't dying! Sort of a good news, bad news thing, don't you think? Good luck! Pat
Hi Pat
My son in law has just been told he has Myeloma. He is 31 with 2 young children. We have only just learned this and are trying to come to terms with it. I am trying to be strong for my daughters sake but I am afraid I am not doing a very good job. Can you give me any peace of mind please.
Regards Julia.
Call me, Julia: 715-271-5037
Hi Pat,
I am happy to hear that medical advancements are being made. My Nana died from multiple myeloma 10 years ago, and she was able to participate in some of the research being done in Australia at the time.
For all the people on this site mentioning how family may distance themselves, I want you to know that it doesn't mean you are not loved or appreciated. In fact it is the complete opposite.
I loved my Nana very much, and could not cope with the reality of her illness. Sometimes it is easier to be denial, particularly when your loved one is sick, but appears healthy.
It is wonderful to see everyone getting together to support one another. I wish you all the best!
Regards,
PJ
I understand, PJ. Sorry you lost someone you loved to multiple myeloma- Pat
Hi Pat
I'm a 39 year old female diagnosed with mm August 2008. I received a stem cell transplant March 3, 2009. It's been 2 years 4 mos & I recently found out I have low levels of the cancer cells returning. I am going to start the 10 mg revlimid maintenance therapy in hopes of keeping everything at bay! I don't really know what to expect, how long will this last- etc. I don't meet the "typical" standard patient age. There's little to no information on someone my age. Do you hVe any suggestions on where I might find more studies on young patients? thank you!
Hi Melissa,
I dont know about any research but not myeloma list serve there number of younger members. You should check there and then you can email them individually. I know 2 members are there 30's and both just under went sct.
Best to you,
And hang in there, after the shock of the diagnosis, it does get better when you start treatment and have a plan.
Christina
Hi Melisa,
If you haven't already been to the discussion forums here at The Myeloma Beacon, be sure to check them out. I can't say for certain, but I believe there are several myeloma patients who post occasionally in the forums who are about your age. Here's the link:
http://www.myelomabeacon.com/forums/
Don't hesitate to introduce yourself and/or post any questions you may have. You also are free to browse earlier postings and discussions -- no registration necessary.
Good luck!
- Boris.
Melissa-
Not to get your hopes up, but when this happened to me, I got almost one year by using 10 mg Revlimid. Remember, two major new drugs and six or seven new assisting drugs will be available in two years or so. Hang in there and keep us updated on your progress- Pat
Melissa -- Please reach out to me...I'd really like to hear more about your story, as my sister is 39 and was diagnosed on April 27th. We are having a hard time finding younger people with the disease and she has asked me to put some effort into showing the face of the younger MM patient.
I'm thinking of you.
Deb
I am 66 yrs of age and I was told three months ago that I have multiple myeloma as well as iron deficiency anemia. The hematologist I go to doesn't give me much info or treatment. He has given me two iron transfusions and has drawn blood each visit. Other than that he just tells me to come back in 4 to 6 weeks.
That is all the treatment(?) I have been given. This dr is head of the new cancer center that was recently built.
I am very nervous and in constant pain and feel he is not sure of what he should be doing. It’s like I am just sitting here waiting for this to get worse, I think I need a new dr. If I don't take charge of this, no one else will.
All of you who read this that has myeloma, you will be in my prayers. May god bless each of you! Joyce
Joyce-
Watchful waiting is a key to living a near normal life with multiple myeloma. That said, if you aren't comfortable, get a second opinion! Find the closest cancer center which specializes in hematological disorders, schedule an appointment with a specialist there and see what he or she thinks. Good luck! Pat
My husband was diagnosed with Multiple Myeloma last January,his femur bone snapped due to the Cancer.Whats the longest years a person lived with this Cancer
Helen
Helen-
I personally know two people who have survived over twenty years after their first treatment. Most recently diagnosed patients are living many years. Be hopeful--and do your homework. Don't forget to get a second opinion! Pat
a good source of info for the new patient is the collection of booklets published by the IMF (International Myeloma Fdn.) http://www.myeloma.org or TheIMF@myeloma.org. The booklets are on the topics of : Understanding Bishposphonate Therapy, Understanding Anemia and Fatigue; Thalidomide Therapy; Balloon Kyphoplasty; Stem Cell Transplant; Revlimid; Serum Free Light Chain Assays; Velcade; Dexamethasone and Other Steroids and more topics. There is also a 'Patient Handbook'. When I was first diagnosed two years ago, I was fortunate enough to be able to attend a conference about myeloma, and that is where I picked up all this reading material. You should be able to get it through your cancer centre or directly from the IMF. I kept reading as I was rotated through several treatments and areas of the cancer ctr., and they were very helpful...even if just to be able to discuss things sensibly with your doctors! Unless you already were conversant with the topic, any new patient is by definition on a steep learning curve.
Steep learning curve is right! Thanks, Nancy. Good info for new patients--or for more experienced survivors to review- Pat
Pat - I have been reading the columns for a while. It's very comforting to see the experiences of other people who actually know what MM is like. But besides sharing experiences, we should take one step further to become more active in raising the awareness and the funding for cure that comes with it. I have always admired the scale of advocacy existing for breast cancer research. The question is how we can do the same.
One example is the exciting breakthrough made by UPenn recently that used genetically engineered T-cells to eradicate leukemia cancer. One of the reports stated that the reseachers' next target is one of the solid tumors. Without taking away the effort in saving patients of other cancers, can the Beacon and its members concentrate their efforts in convincing other universities or cancer centers to find the protein markers of various types of MM and pursue the cures using this innovative technique? We need to try absolutely the best that we can.
I just get the feeling researchers are due for a few major breakthroughs. Hope I'm right! Pat
I find it comforting to have personal viewpoints from others such as those found here. I was diagnosed with smoldering myeloma a over year ago. I am experiencing extreme fatigue, night sweats, headaches, and nose bleeds. The fatigue is really draining. Is this common for early stage disease?
My doctor has discussed conversion rates of 10-12% a year. Now we are doing the watchful waiting. Can anyone tell me how long they smoldered before they converted to full multiple myeloma???
Hello Nancy,
We're sorry to hear about the fatigue and other symptoms you're experiencing.
There are a large number of articles here at The Myeloma Beacon dealing with smoldering myeloma. You can find them at the smoldering myeloma tag page, which is here:
http://www.myelomabeacon.com/tag/smoldering-multiple-myeloma/
Also, the Beacon recently conducted a poll of its readers with smoldering myeloma to see how long it has been since they were first diagnosed. You may find the results of that poll interesting:
http://www.myelomabeacon.com/forum/weekly-poll-how-long-since-your-smoldering-diagnosis-t662.html
Finally, this forum discussion has some useful data on the risk of progressing to active (symptomatic) myeloma if you have smoldering myeloma:
http://www.myelomabeacon.com/forum/smoldering-multiple-myeloma-t148.html
Good luck!
My father has multiple myeloma. He is getting ready to have a stem cell transplant. I find it very sad that you would say that if you survive for years that family and friends lose intrest. I come from family and community that have been very supportive. My mother and I will be by my fathers side till the end of time. You never give up on your family! I feel so sorry for all of you who feel alone. There are people, like myself, who are praying for each and everyone of you. Thank you for all your posts. I have know idea what my father is going through because he doesn't talk much about it. I read different articles and websites so I can try to understand. Bless you.
I wrote this column quite a while ago. But it is interesting that the very subject of "family and friends losing interest" came up yesterday at a support group meeting I spoke to in Charlotte, NC. Of course our spouse and/or caregiver, and some others, stick by us and don't lose interest--at least I hope not! But after the initial drama is gone and things stabilize, you tend to hear a lot of comments like "You don't look sick." or "Your color looks great!" People move on. Living with cancer for five to ten years wears the patient out--but also friends and family. Most of my family lost interest until my failed stem cell transplant. Then (I think because things were serious enough to get their attention--or maybe they simply thought I was going to die) I started getting phone calls and emails again. That's OK--and it isn't that unusual in our self centered, fast paced world. It is what it is. I'm glad your family is more supportive of your father over the long haul. Best of luck! Pat
Pat
I have had the same experience as you, in terms of, family/friends losing interest...and I was diagnosed just this past September.
Point of fact, I have heard the very same comment..."you don't look sick"...'well for someone with cancer you look great" "you sound great"
Perhaps, those comments are meant to make you feel good, but somehow it seems to sound more like, they are expecting you to look or sound awful since you have cancer. I find myself explaining that the chemo is not as toxic as it has been in the past and that therapy has improved.
At times I feel somewhat defensive as if the individuals wonder if I actually have cancer.
So, I agree with you about people going on with their lives, just as they do after funerals. When there is a crisis there is an outpouring of support but a chronic illness is draining and folks move on.
Sometimes I think this is because they simply do not know what they can do to be supportive when you are dealing with the cancer over multiple years.
In the end I suppose, we are fortunate that we 'dpn't look like we have cancer'...lol
Exactly, Susie! I find I'm defending the fact that I look OK! The funeral point is interesting, too. My mother-in-law died two years ago with almost no support of visitors in the nursing home. One of her own daughters (not Pattie, of course) never visited once. But everyone showed-up at the funeral. Too late then, right?
When I was going thru all the chemo, SCT,etc., everyone was very sympathetic, and when i look at pictures from that time, I can see that I didn't look well at all! Now am off all the meds, at least for the time being, and people also compliment me, which is nice! One quite scary thing for about two years was how people who had lost someone to MM (I know three women who lost their husbands or father), would look at me as if I wasn't going to make it. I tried to explain that the new drugs are much better now, and give one a good chance for a better life, but they had a hard time accepting that. Now one friend in my choir, who lost her dear husband of many years to MM, gives me a huge smile at every practise! I have done better with this disease than she ever expected I would...and that is in part thanks to all the great new treatments that have really only been available in the last five years or so.
I think the reason people appear to lose interest is that they really don't understand the disease. Most people, myself included before I was diagnosed, think of cancer generally as a disease that you either die from in a short period of time or recover from. As everyone here knows, MM does not work that way. So when they see people looking healthy they assume that they either recovered or are recovering. I tell people that MM is a non-curable form of cancer but that is treatable. Most people are surprised that I am in "remission" but continue to receive "treatments". So that they can equate it with something that they are familiar with I draw an analogy to diabetes. Most people are aware that diabetes is not curable but treatable. They are aware that people with diabetes must take insulin all of their lives or they will die and that diabetes causes serious complications. So I tell them that like a diabetic, I must continue to stay on medications the rest of my life until a cure is found. They then at least understand somewhat. In the end most people don't want to dwell long about cancer or death since it forces them to reflect on their own mortality.
I couldn't have written it better myself, Ron! Thanks!
Hi Pat and Suzie Rose and Ron
Well said Ron! I tell people that I am in remission but still have to get my blood tests done every three months, and they get the idea that MM has to be closely monitored, since it is not a condition that you can be completely 'cured' of. And of course , unfortunately at my age, everyone does know of people who have had other cancers too, which act differently from this one. MM makes up only 1% of cancer diagnoses, so it is no wonder that most people haven't encountered it in their daily lives. I think it affects about 1-3 in 100,000 people.
People have made the comment about my complexion looking healthy...prior to diagnosis, I was getting a sallow complexion..I can see it in photos. Since my bone marrow is now functioning properly, it makes sense to me that my blood circulation is better, thus giving me a healthy glow!
Happy New Year!
Thanks for the site as it helps me to know what others go through.
I am in remission, had a transplant in March 2011 and till today I am still not in good shape.
Pat, can you please email me?
Thanks,
M
Hi Margaret L,
The email addresses for all Beacon writers and columnists can be found at the Beacon's "About Us" page, here: http://www.myelomabeacon.com/about-us/ .
Happy New Year to you (and all Beacon readers) as well!
Well stated Ron...I am going to try that explanation.
It is a lot more people friendly as folks are not frightened of diabetes and understand it far more than 'incurable cancer'.
Thanks for the wonderful feedback.
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