I’m celebrating today! My myeloma docs originally told me the median life expectancy for a Stage 2 myeloma patient was less than four years.
That was exactly four years ago today, making this the four year “anniversary” of my diagnosis. For me, this seems like a more important day than my 55th birthday was in February.
Pattie and I will spend a quiet day around the house. We plan to take our dog, Finnegan, for a walk along the Gulf, near Pine Island beach.
The forcast is for 83 degrees and sunny. Since the solar heater has our pool temp up in the high 80′s, swimming a few laps and a simple meal by the pool sounds like just what the doctor ordered.
Monday I make my last visit to the radiation clinic–and start my “three chemo cocktail.” But for today, it doesn’t get much better than this!
Feel good and keep smiling! Pat
April 3rd, 2011 at 2:39 pm
Sounds like a fabulous day is planned! Enjoy!
April 3rd, 2011 at 2:54 pm
Sounds like a great day and enjoy. Upper 80's, you have really hit a nerve with that one. My pool has a thin layer of ice.;)
April 3rd, 2011 at 3:04 pm
Pat,
I have been following your blog for several months now. I commend you and your wife for your diligence and dedication in providing aid and information for anyone affected by myeloma. I chose to make my first contact with you today, because April 3rd is my birthday and this is a significant day for you, too.
I have a rather unique situation. My father died of myeloma in 2006 after battling it for 13 years. My mother was diagnosed 14 months later with stage 2 myeloma. She probably had it while my dad was still alive and we didn't even know it! Obviously, my odds of getting myeloma are much greater than the average person.
Have you ever heard of any accounts of non-genetic clustering within families i.e.spousal?
If so, please share. My mother continues her fight and I have a feeling myeloma is going to be a part of my life for a long time, in one way or another.
I look forward to hearing from you or anyone else that may have some insight.
Happy April 3rd!! Sybil
April 3rd, 2011 at 6:50 pm
Sounds like a perfect day to get out and enjoy all that God has created. Enjoy your day!
April 3rd, 2011 at 7:33 pm
Pictures to follow this evening. Thanks all! Pat
April 3rd, 2011 at 7:37 pm
Sybil-
Myeloma experts continue to argue both of your parents developing mm is a coincidence, and you have nothing to worry about. Common sense tells me it seems suspicious!
Again, myeloma experts might explain it if your parents (and you?) might have been exposed to strong farm or industrial chemicals, that sort of thing. Otherwise, no worries!
Bottom line is there isn't much you can do about it, other than get screened every few years, just in case to avoid bone or kidney damage if you do develop mm.
Try not to worry! If you were to get mm sometime in the future, a cure or drugs which at least keep it under control are not far away.
How is your mother doing? Pat
April 4th, 2011 at 2:31 am
Congratulations Pat. My four year anniversary is April 6. After my sct my doctor said, "you now have a 40% chance of living four years." That date is 11-30-2011. I plan on seeing that one also. Linda
April 4th, 2011 at 2:49 am
Hey Linda… You rock! Let's get together and celebrate in four years! Pat
April 5th, 2011 at 10:52 pm
Pat, Thanks for answering. As a matter of fact, we did live within 5 miles of a plant that manufactured chlordane. Of course, I'll never have proof, but it has always been my feeling that it may be the culprit. My mom is in her first relapse. They are trying velcade, but it is not working, so Friday we will discuss the next option. I'm pushing for rev/dex.
You are in my thoughts as you begin your next set of challenges. I so admire the way you live your life!
Sybil
April 6th, 2011 at 3:52 am
Sybil-
How exciting your mother still has option of using Rev/dex. How did she achieve first remission? Transplant? Thalidomide? Don't forget option of study using one of six different novel agents… As long as her bone marrow holds up. Good luck! Pat
April 6th, 2011 at 1:09 pm
Pat…as you may remember the Mayo Docs gave me 2 years after stage IV metastatic prostate cancer diagnosis…it'll be 5 years in August. You continue to amaze and inspire us all. I wish you well with your latest treatments. Thank you, my friend for all you do for us cancer survivors and our caregivers…
Gene
April 6th, 2011 at 10:46 pm
Pat-Mom achieved her first remission with melphalan/prednisone/ thalidomide. She took that regimen for 2 years. After that she was able to be drug free for 12 months, then the inevitable climb of the m-spike. She has been given 8 infusions of velcade/dex but her spike continues to go up. The doc mentioned doxil–I am not happy about that. I think rev/dex should be the next choice. I am a pharmacist, so I have an advantage discussing and understanding options, but in the end I have to trust their judgement.Mom is 83 and living independently. My main goal is to keep her that way as long as possible. It is a delicate balance. Thank you for your interest. Sybil
April 7th, 2011 at 3:03 am
Gene-
We are both blessed with loving wives and families…
We are both stronger for facing cancer.
Whether and whenever the cancer wins isn't the point. The point is we have both turned to a life of service, trying to help others. By doing that we help ourselves. What else is there, good friend? Stay strong- Pat
April 7th, 2011 at 3:06 am
Sybil-
Your instincts seem good to me… Why are your mother's docs reluctant to try Revlimid? If the Thalomid worked, I would think Revlimid might.
I'm not a doctor, but that would be my choice. Why isn't it theirs? Is there something medically I or you don't see? Kidney involvement, for example? Any financial reasons not to use Rev? Pat
October 4th, 2011 at 6:13 pm
My husband’s (MM-Stage III) 4-year anniversary is today also!! Praise the Lord!! My prayers are for you all to have many more years!
October 4th, 2011 at 11:48 pm
Sounds like we have both had this thing for about the same amount of time. Let’s plan a meeting in ten years!
October 6th, 2011 at 9:56 am
Ten years it is….will look forward to that!!
October 6th, 2011 at 3:27 pm
Thanks, Brenda! I’m sitting in my oncologist’s office, waiting for three month blood test results as I type this. Wish me luck! Pat
October 26th, 2011 at 9:25 am
What an inspiration you are all. My Dad is 67, and was just diagnosed with stage III MM. I love him so much, and want to keep him around for a long LONG time.
October 26th, 2011 at 10:20 am
Staging means very little when treating multiple myeloma, Michele. Unless he exhibits some unusual chromosomal issues, he could live a decade or more. Key is keeping him healthy enough to keep taking ongoing therapy. Time to start eating lots of fresh fruit and veggies! Good luck to you both…
November 14th, 2011 at 10:48 pm
It’s wonderful to hear all these uplifting stories of survivors “beating the odds”! My 71 year old mother (who can still run circles around me, btw) was just diagnosed with Stage II IgG lambda mm, but unfortunately, we discovered that she has a couple of the “bad” cytogenetic abnormalities; del 13 and t(4;14). Her local hematologist/oncologist is starting her on Revlimid/low dose dex, but I’m wondering if a Velcade based induction treatment might be better based on recent studies I’ve read?
In any event, Mom is an amazingly strong and positive woman, and I’m going to do everything in my power to keep her healthy as long as possible, while supporting her and respecting her wishes (she will not even consider a stem cell transplant at this point because it would “slow her down too much”! Quality of life is definitely a very high priority for her.
Thanks for the opportunity to share and may God continue to bless each of you. It is a privilege to lift you in my prayers!
Much love and admiration,
Lisa
November 15th, 2011 at 9:53 am
Hi Lisa-
Sorry to hear about your mom. I don’t believe there is a “right or wrong” or “better” treatment at this point. She is going to need it all! Hopefully both Revlimid and Velcade will help her. About the transplant. Deciding not to transplant opens up some therapy options–things docs don’t like to use because it makes harvesting stem cells difficult–like cytoxan and melphalan. But maybe she will come around and consider transplant option. See if you can convince her to harvest, just in case. Best of luck to you both!
November 15th, 2011 at 4:21 pm
Pat,
Thank you for taking the time to respond to my post! I’ve had a chance to read more of your blog and am very sorry that the stc hasn’t worked as well as everyone hoped. I will continue to pray that it is just a delayed response and your numbers will quickly turn around. I’m thankful that you did well with the melanoma surgery! Your attitude and spirit are so incredibly inspiring!!
I’ve encountered a lot of seemingly “conflicting” information recently regarding the PFS and OS of people with del 13 and t(4:14) myeloma, but the best I can tell, these two abnormalities “on their own” no longer have “as much” prognostic significance with the current use of certain new drug therapies. I know that some treatment facilities use “gene expression profiling” to further classify into low, intermediate, and high risk groups and treat more aggressively for the higher risk.
Ultimately, it is obvious that mm is a very “individual” disease and that prognosis is just a number; however, I would still be very interested in input/comments/experiences from others who are diagnosed with unfavorable cytogenetics.
Thank you again for everything! I am so humbled by members of the Myelomaville community! Your strength, courage, faith, and perseverance are amazing! Blessings, and may we all keep smiling!:) – Lisa
November 15th, 2011 at 4:59 pm
Hi Lisa-
I agree with your conclusions. Personally, I don’t think categorizing patients is that important for now. Some day, when docs know enough to predict which treatment will work best, maybe. But for now, all everyone is doing is guessing. Respond to one drug, don’t respond to another, add another. What difference does these categories make? Are you telling me you aren’t going to end up trying everything anyway? Good luck and thanks for reading! Glad I can help…
December 16th, 2011 at 11:23 am
I would like to know it anybody has had a auto stem cell transplant and no maintance and how long has it been since your transplant. I am stage II multiple myeloma and have been through all the chemo and auto cell transplant but I am not doing the manintance. I would like very much to hear back from you.
Live and love life
Donna
December 16th, 2011 at 11:43 am
Hi Donna-
Lots of patients still transplant and then skip maintenance. I have a friend almost four years out post-SCT, no maintenance. Current rule of thumb is if you can achieve CR then skip maintenance. If not, consider it. Still no data supporting longer overall survival if you use maintenance, but most myeloma docs feel very significant progression free survival data (up to 19 extra months) will eventually translate into longer patient survival. Good luck! Lots to be hopeful about. You could always harvest and wait, you know!
February 12th, 2012 at 10:45 pm
Do you know a trial that does harvest and store? Our insurance says the process must all be done at the same time. No waiting…
Thank you so much for this blog Pat.. It is very helpful.
February 12th, 2012 at 11:19 pm
Rose-
I would be surprised if there is a specific “harvest and store” trial. You might be able to find another stem cell trial which is set up that way that tests some type of maintenance or an experimental high dose chemo combination. You can enter your zip code into the TrialX search widget on the right side of my homepage to begin searching. What some patients and docs do is say they are going to do it all together. Insurance approves, then doc writes a letter saying in his or her opinion patient should not transplant at this time. A bit risky, but I know it works. Another option is to appeal. Then appeal again and again if you are denied and wear them down. This is an antiquated rule that most companies don’t follow anymore. Sorry it is so hard. Much harder back over four years ago when I did it. This is all a lot of work. You feel bad–then have to do all of this extra stuff. Welcome to the exclusive and “fun” myeloma club!
February 25th, 2012 at 9:40 pm
Diagnosed June 2, 2010 with IgG Kappa. Classified as low risk and treated at UAMS in Little Rock. I was on total therapy 4 and have had tandam SCT the first in Sept 2010 the second in Nov 2010. I made it fine through both transplants with only severe fatigue as the worst side effect.
I started maintainence in July of 2011 with RVD, already with mild peripheral neuropathy, the Velcaid was stopped in Sept due to ever progresive neuropathy. I continued on Rev and Dex until just 2 weeks ago when, in consult with my oncologist, my idea not hers, I elected to stop maintainence. M spike is 0, all tumor markers are normal and praise God I feel better only slightly low H & H and normal range for WBC. I still have to take medication for my back, having suffered 9 compression fractures due to myeloma. I also have some kidney damage as my GFR runs in the >59 range so I make sure I drink at least a gallon of water a day. On the up side when I harvested I got over 50 million so I have tons more in the bank if needed but I don’t think I will for a very long time. To be continued…
February 26th, 2012 at 12:46 am
Bob-
So difficult to fight through all of this… Your story is very similar to many others. Thanks for sharing!
March 2nd, 2012 at 2:21 am
Hi I am a 55 year old female recently diagnosed with MM. MY protein reading in Jan read 4.9 but as of today March 1, 2012 they read 0.9 which means the chemo treatments are having an effect on the cancer. I have a long road ahead The doctor says if all goes well I could possibly have my S S transplant in the early summer. Presently I am at Lahey Clinic in Burlington, MA. Not sure if I should consider my procedure to be at Dana Farber. I like my doctor At L.C. and he is nationally recognized. Should I change hospitals as D.F. has a better rep nationally. What is the procedure like from a patient’s perspective? Will I be very tired sick. Please chat.
March 2nd, 2012 at 7:52 am
I’m glad that your treatment is working, Michelle. I don’t want to play with your head, but if you are tolerating your induction so far, it hasn’t been that long. By late spring or early summer, you could be close to zero, or even in complete response. At that point, you could choose to wait and go directly to maintenance. I’m just saying… An auto stem cell transplant is the current “standard of care” in your situation. But it was for me, too, but I was able to delay for four years. They just completed several studies which show waiting until first or even second relapse statistically doesn’t change the how well your transplant might work. That said, a lot of reputable docs aren’t comfortable waiting–and there is nothing wrong with going ahead with the plan. Watch your doc start to “squirm” of you ask about waiting and trying maintenance after you get your numbers as low as they will go! You harvest at that point, then wait. There are advantages to getting a SCT now, especially if you have the option of taking a drug holiday if the transplant achieves a complete response (CR). If they want you to do maintenance post SCT anyway, they you might ask yourself why transplant now? I’m probably messing with your head–and I understand this is a big responsibility for someone who isn’t a doc. The transplant itself is no fun, but nothing to be afraid of. You really should read my book, Living with Multiple Myeloma.
Much of it is about just how and why I made the decision to wait. By the way, when I did finally transplant, it didn’t work. Was that because I waited? I’ll never know. Fortunately my chemo is working better now then it did before, so now worries for a while. Welcome to the roller coaster ride! Good luck!