Pat’s Place: It’s All About The Journey
Last month, I wrote about undergoing radiation therapy on both hips. I thought this month I would pass along how I’m doing in other ways.
First, the numbers. My doublet therapy of Pomalyst (pomalidomide; Imnovid) and dexamethasone (Decadron) has now held my M-spike steady for two full months. The problem is that, even though my M-spike hovers around 0.6 g/dL (6 g/L), I get the distinct, painful feeling that lesions are continuing to develop and get worse.
The radiation did make the pain go away on my right hip. However, it has returned on my left. I believe that my insurance will pay for an additional five treatments at this point, and I may take them up on it.
After four months of Pomalyst therapy, I’m disappointed to report that I’ve become neutropenic. My absolute neutrophil count has dropped to 0.93. That’s not dangerously low, but I’m always concerned that low counts could someday prevent me from continuing the therapy, which is the only thing that’s keeping me alive at this point.
Fortunately, next week is my off week. And, so far, my counts have shown the ability to recover.
On a more positive note, my peripheral neuropathy has improved on Pomalyst. Although I continue to drop things and have trouble writing, the tingling and other uncomfortable side effects are significantly less now.
Of course, taking oxycodone for my bone pain – and a well-thought-out and practiced preventative supplement and gabapentin (Neurontin) regimen – help mask any neuropathy that is still there.
My myeloma specialist on the Gulf Coast and my new specialist here at the Mayo Clinic are investigating the possibility that I’ve become a non-secretor, which means that my myeloma cells produce very little or no monoclonal protein.
If that's the case, my M-spike would no longer be an accurate indicator for what my myeloma is doing. It also would mean that using PET scans to track my bone lesions may be a better way of monitoring my disease.
My insurance will only approve a PET scan every four months, but that should be often enough. My next scan is a month away.
At my urging, my doctor here suggested we start investigating the possibility of my undergoing an allogeneic (donor) stem cell transplant. Ironically, my sometimes difficult insurance company preliminarily approved the gigantic expense of a transplant, including six months before and a full year after the procedure.
My former specialist, who heads up Moffitt Cancer Center’s transplant unit, is not enthusiastic about this option. My new specialist is open to it, but if we decide to go for it, he would like me to do one within a clinical trial. I don’t have a matching donor yet, but statistics say that it’s likely I will find one within a reasonable time frame.
Even though we know that an allo is a possibility for me, it’s a long shot at best. My wife, Pattie, is strongly opposed to it. Still, it’s good to know that the option is there, if necessary.
And, finally, I saw a new primary care physician this week. I selected him because I knew he was into complementary medicine. We hadn’t met before, but he was just what I expected: laid-back, beard, socks, and sandals. And, yes, he was wearing an appropriate, white lab coat.
He kindly spent almost 45 minutes taking my medical history and making suggestions. One was to begin meditating. As a matter of fact, he prescribed it to me: twice a day for at least 20 minutes at a time. He suggested I pick a mantra, something I repeat over and over in my head during the sessions.
It wasn’t difficult for me to find one. “It’s about the journey.” It’s a bit too long, but the message is a real one for me: slow down and appreciate each moment, each day. So I shortened it to “the journey.” I like to meditate while I swim. I get lost in laps, feeling weightless. While swimming, I found “journey” works best. So “journey” it is!
Back to the big picture. Questions about my future therapy remain. If my next PET scan shows any additional myeloma hot spots, the plan is to add at least one additional drug to Pomalyst and dex.
But for now, it’s all about the journey.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
My husband's journey ended just over two years ago, but it's so good to read that you're still hiking, Pat!
Lia
Excellent article, Pat. Journey on, indeed.
You are ever in my thoughts and in the thoughts of many for whom you have served as an invaluable source of both information and inspiration. Wishing you a gentle, successful journey ahead.
Pat, thank you for all you've shared and inspired.
Your current path is exactly the one I so hope to avoid. As unpleasant as my ASCT (autologous stem cell transplant) was, my understanding is that the allo is dramatically worse (I'm assuming this is not news to you
) Here's hoping you can avoid it, but if not, may it be a great success!
In your piece, you made the following statement: "my peripheral neuropathy has improved on Pomalyst". I'll be the first to admit that, despite my numerous lytic lesions, my system simply could not tolerate any of the "bone meds". That being said, I don't recall having ever read or heard that Pomalyst helps with neuropathy.
Have I just totally missed something?
Thanx again
Daniel
God Bless you Pat! Hope you feel better soon!
I value your columns, I learn a lot from them and about what I will need to do in the future if I get to the point where you are in my disease progression. I really appreciate you sharing your experiences so we can learn from them.
Hi Pat,
Sounds like you are going through a lot! I guess the last time I saw you was when we were in New Orleans. At the ASH convention!
I have always appreciated you efforts I helping others with MM.
I have been seeing Dr. Wingard at Shands Hospital. He is the head of the SCT program at Shands and works with the myeloma specialist, Dr. Moreb. Doing OK and will be 9 years in two month since diagnosis!
I hope you find a good donor and, if you go that route, you have much success.
You are a great source to all of us and a great guy!
Thanks,
Dan
Pat,
Good to hear from you. Your columns have been and continue to be one of the many reasons I open the Beacon site and jump in. Best wishes to you as you continue on this journey - and thank you for continuing to share your thoughts with all of us.
Sorry to hear about your husband, Lia. On his behalf, thanks for all you did to help him along on his myeloma journey. Where would we be without caregivers?
Daniel, maybe I misspoke. I didn't mean to imply that pomalyst "helped" my PN. But it doesn't seem to be contributing to it. So no Velcade (sub-q or not, still doesn't help) or Revlimid (a problem for me for some reason) and my PN symptoms are lessening. A big improvement over Revlimid. Now, I do experience more fatigue and occasionally flu-like symptoms that I contribute to it. Guess we're forced to take good with the bad.
Hey! Good to hear from you, Dan! Good to hear from all of you! Dan is one of the most positive, upbeat myeloma survivors I know. Nine years? Way to go, Dan! I'm right behind you...
I am also on Pomalyst, and my peripheral neuropathy has also improved!
But Pomalyst 2mg was dangerously lowering my heart rate and dangerously lowering my blood pressure. I passed out one day and had to call 911. BP was 60/40 and HR was 46. I then feared Pomalyst would kill me, so I quit it.
Then I proposed taking Pomalyst every-other-day, and my onc said "Let's try it." This is working! I was even able to "up" the dosage to 3mg every-other-day, and my heart is basically unaffected ... but sometimes my HR drops to the low 60's, but no longer the low 50's. My QOL was terrible with a low 50's HR.
I was diagnosed in 2004 and an SCT provided almost a 7 year remission. I wore out Carfilzomib, so Pomalyst was approved just in time. My QOL on Pomalyst is very good. I'm 66 years old and I'm very active. But I have chemo side effects from 200 Melphalan (SCT) and others, and memory loss and concentration difficulty.
Scary, Mike! Heck, I don't know any better; I'm still on 4 mg Pomalyst. I'm guessing they may cut that back since I'm becoming neutropenic at the end of my 21 day cycles. I, too, have memory loss and difficulty concentrating. A therapist prescribed me Ritalin. Said it has been shown to help improve chemo brain. I never did try it. 2 bottles still sitting on the shelf. Maybe I should; just so many meds ...
Hi Pat, thanks again for another informative, matter of fact column. Wish there were more like yours. I have a suggestion. I attended a lecture by Dr. Christina Gasparetto of Duke. She is an expert in allo transplants. Maybe if you read some of her thoughts it can help your decision as you are always helping us with your columns.
God bless, Pat.
Ralph
Hey Pat, What a journey you have travelled, unbloody believable. My heroes are not athletes or movie stars. They are the Pat Killingsworths of the world.
My one question to you, Pat, is have you ever tried marijuana, smoke or oil. My friend who is a non smoker or substance abuser has had wonderful results from the oil in cookies for pain control and sleep aid. Also your thoughts on how so many people are convinced marijuana is a cancer killer. Your position on this subject would be extremely helpful. My friend is now in the early stages of considering an auto stem cell transplant. Any information would be much appreciated, Pat.
Keep up the journey. We are all in your corner. Thanks again.
Donald E. Feakes
Winipeg Mb
Canada
Pat, take the Ritalin! I have been taking Adderall 20 mg for four years! It has changed my life and driven away my depression! Within 3 weeks of starting Adderall 20 mg, I was a different person! I have reported this numerous times. I remain convinced that melphalan 200 mg during the SCT radically affected my body, organs, and brain. I've had "paste diarrhea" ever since melphalan in 2005. Before melphalan, I was constipated my entire life. What everybody blames on an SCT, I blame on melphalan.
Take the Ritalin, or Adderall.
I have terrible hip pain that began two days ago?? Reading about you and your hips scares me!
Most of the time I have no detectable M-Spike. When I do it is 0.2 to 0.3.
Mike
Best Wishes to you and Pattie, Pat. I hope that with the meditation and consultation with your myeloma doctors you can get this myeloma turned around. I also learn a lot from your writing, although I know that it is from first hand experience on your part. Hope your journey gets easier!
Great tip, Ralph, thanks!
Donald, the honest answer to your question is, "Yes." I have tried marijuana to help nausea caused by taking so much dexamethasone all at once. It helps. Dulls some of the pain, too--or at least I don't care as much :).
But regulated meds like Ativan (nausea) and oxycodone (pain and peripheral neuropathy) work for me, too. I'm fortunate that way. Less expensive and I don't get high. Now most would say, "That's the best part!" But I don't like being altered; too much to do and too little time.
I'm a big supporter of new U.S. medical marijuana laws. I'm hoping Florida's passes; not so I can use--I'm not worried about that--but for so many others that desperately need pain relief and can't seem to get results through meds available by prescription.
Both Don and Nancy are readers from Canada. Awesome!
I should try the Ritalin. Thanks for the encouragement, Donald! Not sure what to say about your hip. Pain is so new and I'm not a doctor. Lesions can develop at low M-spike numbers of course (I'm proof of that) but seems to me that would be pretty far down the list in your case. Good luck!
If you are looking at some alternative treatments, I use Far Infra Red sauna, every day. I bought it at Costco for reasonable price and it is invaluable in dealing with bone pain. If I miss a day I can feel the difference. 130 F (55 C) for about 40 minutes, then a cool shower. Swedes have been doing this for eons of time, perhaps we in North America should adopt it.
The University of Windsor in Canada is also doing research study on the use of dandelion roots to treat cancer. 4 cups per day of dandelion tea, each cup made from dehydrated, ground up dandelion root. Tastes like a bitter celery soup. I love it and I feel it is complementary to my Revlimid and dex.
Take the info for what you like. I am merely telling you what is working for me. I have not taken the stem cell transplant route, but use the novel agents in tandem with natural and homeopathic techniques for 3.5 years. I wish you the best Pat, and keep writing and helping the rest of us to deal with myeloma.
Interesting, Eric! So many things that might help that our doctors don't understand. Heat therapy (with and without X rays) sounds like it may hold promise. Glad you've found something that works well for you. Thanks for sharing!
Hello Pat, good to see your MB column this month. I am sorry for your challenges, and join the others in wishing you well. Thank you for what you have done for the Myeloma community.
As we discussed, the salvage allo idea is a major step with many risks, one that my wife and I choose to avoid, for many reasons. There are still a number of FDA approved options that you did not try. And other clinical trials, including immunotherapy that I am pursuing, are worth perusing.
Couple of thoughts on the comments offered. A trial of Ritalin may be useful for you; it is quite individual in its effect. In terms of cannabinoids, there is exciting research on antineoplastic activity even without the THC effects (which may be useful or not). Heat therapy, be it hot tubs or infrared saunas (which are on the other end of the electromagnetic spectrum: microwave, not X rays) can be very useful.
And all of us can benefit from mindfulness; any number of meditation techniques, yoga, prayer and others can only benefit our tolerance and outlook on symptoms. Best wishes, Jan
Hi Pat,
Here is to your journey and living in the moment!! This has been my mantra for the last 10+ years. I am hopeful that it will see you through this rough patch. I am encouraged by all the new treatments and trials that are available today.
Thank you for sharing your journey
Stacy
Always great to hear from you, Doctor! I understand you are facing a number of difficult challenges yourself. Good luck with that and thanks for the insight and tips. No worries; Pattie and I have ruled the allo SCT option out for now. And appreciate the encouragement, Stacy! It helps!
Hi, Pat!
Thanks for letting folks walk along with you on your journey. You have certainly showed me the value of questioning the drs. and knowing as much as possible about mm I think having a primary dr. who can help with alternative treatment (meditation,etc.) is a good idea. Someone just this afternoon suggested restorative yoga to me, as a matter of fact.
Hope today is a good one for you and your wife.
Sylvia
Pat,
I hope you totally understand how your writing has helped me with my own journey that began in February 2014. Here in Gig Harbor, WA, my MM specialist is at the Seattle Cancer Care Alliance in Seattle. The first SCT was done at SCCA, and I am scheduled to begin preparing for an auto on October 14th. Because of your dedication to other MM patients, your passion for learning all you can about MM, and your courage to share with us your own "journey," I have a list of questions to present to my specialist (and his staff). Should I learn of anything that hasn't already been mentioned, I'll be certain to pass it on through this venue.
My prayers are with you, Pat. Like others have already said, I wish you the BEST in terms of a turn-around. My sense is that you somewhat "downplay" your discomfort, and out of love, I want you pain-free and able to enjoy every moment of every day.
Yes! And music therapy, meditation; opening up things to discussion helps patients exchange seemingly simple ideas that can make a big difference in our quality of life...
Hello Pat,
I was diagnosed in 2009 with this ugly cancer. In February 2013 I entered Seattle Cancer Care for an auto stem cell transplant. After 2 weeks of "testing", my husband and I were informed that Medicare rejected the claim because I "only had one tumor". My treatment for the past 3 years has been Kyprolis IV chemo 2x week plus Revlimid and dex at home. Revlimid is now $10,400.00 a month for 21 pills!!
As of now there is more bone pain, I do not take pain meds, nor do I drink alcohol. What gets me by is marijuana.
Am sooo grateful to have been apart of our grandgirl's high school graduation. The sun is out in Seattle, Life Is Good!
Sometimes no rhyme or reason to this insurance stuff. Glad everything worked out--and that you've found a way to help your pain!
Sorry I didn't respond to your heartfelt comments, Patty and Sylvia. Sometimes these things pop-up after I've responded to someone else. Glad you can live in such a beautiful, awesome place and still get such great care, Patty!
Hi Pat,
I am sure your numbers will begin to improve and maybe th eaddition of another drug to the current combination would do the trick.
I was also wondering if it Would be worth investigating the Mayo clinic's measles virotherapy(they are in phase 2 clinical trials and are recruiting new patients) or the newly formulated monoclonal antibodies CD38, CD47 etc as a first step prior to considering an allogenic transplant?
I have a lot of faith in the measles virotherapy program based on the work done by Dr. William Coley in the 1900s. The Mayo clinic measles virotherapy seems ot be along the same lines though with a better understanding of the process.
Thanks
Vijay Poduval
Thanks, Vijay! I know Dr. Angela Dispenzieri who has been spearheading the project for a number of years. Very promising and it may be a possible alternative for me. Fortunately, I can sit back while they work out the "bugs," (pun intended) and hopefully it will be ready for prime time in a year or two...