Pat’s Place: I’m Home!
It’s been 37 long, hard days away from home for my salvage transplant. The good news: I’m home early!
I left last week facing a very difficult decision: Should I take my specialist’s advice and move forward with a second, tandem, stem cell transplant?
My doctor felt if the first one didn’t work, well, skip the second transplant. But if the one I just had got most, or all, of my myeloma, crush it with a second transplant.
“Don’t make a decision now,” he told me and my wife Pattie at our meeting on July 28. “Come back in five weeks. We’ll do a follow-up bone marrow biopsy, PET scan, brain MRI, and bloodwork and see where we stand.”
Pattie and I agreed to wait. Our minds were already out the door. To be flying home in July, when I had originally made plane reservations for August 14, seemed like a miracle.
But I’m getting ahead of myself. Just because things went better than anticipated didn’t mean there wasn’t any drama. Can you say antibiotic-resistant infection?
Although I was technically an outpatient, I found myself hospitalized in the transplant unit twice; the first time for three days, then, four days later, I was back for an 11-day stay.
Why? The first time, I was dehydrated. The second time, I had an antibiotic-resistant infection.
I had a twin catheter surgically implanted in my neck for stem cell collection. That was removed about the time my larger, fancier Xcela Power Injectable Port was put into the right side of my chest. Unfortunately, the insertion point quickly became infected. So did my fancy chest port. It took 45 minutes to put in and 45 minutes to dig it out.
The same doctor placed and removed both lines. He did a great job on the chest port; no infection there. But the infection in my neck would haunt me for three weeks, requiring daily infusions of Cubicin (daptomycin), an antibiotic specifically designed to battle my type of bacterial infection. All subsequent cultures tested negative, and so far, so good. It seems like my neck is healing up on its own since I had my last Cubicin infusion on Sunday.
I endured chronic diarrhea for three full weeks. For several weeks I ran a fever and hallucinated – wild, crazy dreams. I would fall asleep on a moment’s notice, imagining all sizes and colors of gnomes and mythical animals. I would see myself walking around the room when, in fact, I was still sitting or lying in bed.
One of the most difficult parts of the process for me has always been the nausea. I had several meetings with my transplant team to get a better feel for what to expect. The team came up with several innovative, rarely used drugs that helped a lot. I was also more relaxed this time around. I think that helped quell any stress-based nausea like I experienced during my first transplant in 2011.
Another dreaded part of undergoing a stem cell transplant for me: not feeling like myself, and not being able to think clearly. In other words, being “out of it.”
Fortunately, I only lost half dozen days that way. If I compare my latest transplant experience to my first, this one was much, much easier. Still no fun nor tolerable (I hate when physicians use that word), but I feel like I only lost a month of my life.
I’m recovering more quickly, too. I credit that to being infused with more than twice the stem cells, along with well-timed Neulasta (pegfilgrastim) and Aranesp (darbepoetin alfa) injections. These medications have helped boost my white cell and platelet counts to well above where they were pre-transplant. My hemoglobin is still a bit low, but that’s coming up, too.
All good news. And I have some more. I don’t feel any pain throughout my body any more.
During the transplant, the tumor in my skull above my neck was painful. So were my upper neck, lower back, the lesion in my left femur, and several spots in my ribs. I now believe that was caused by the chemotherapy attacking those areas. Plus, retaining 11 pounds of water probably didn’t help.
Now that a month has passed since the transplant, I have no pain in any of those areas. No pain. I know my body pretty well after over eight years dealing with my cancer. I think this is a good sign.
This was a salvage stem cell transplant – a Hail Mary. I gambled. If it helps, I win. But, because I’m a nonsecretor, I won’t have any definitive news until I return to the transplant center the week after Labor Day. Wish me luck!
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 .
Hi Pat,
Glad to hear that things have been generally going well for you, despite the issues you mentioned.
I hope the rest of the ASCT recovery continues to go well and, especially, that you get good news from the BMB.
Mike
Hi, Pat,
Enjoyed reading your column. Hope your recovery is continuing. I received my 2nd transplant on 7/9/15 and have been home almost 3 weeks. First transplant was in March 2013. Not bouncing back as quickly this time, but I know it will happen. Best of health to you.
Teres
So glad to hear you are doing well! My husband is getting ready to start D-PACE as he's now used up everything else. He had intractable nausea with his asct, and a couple of weeks ago when given Bendamusine (vomiting so severe that he had a brain bleed, as his platelets were also low). Can you please tell me what helped with your nausea this time?
Pat, I am so happy to read that you are on the 'after' side of the ASCT, that you are home, and most especially that much of your pain has abated. We've been thinking about you. I'm sorry that you've been put through the ringer again, but I join you with a hope and a prayer that good news is around the corner. I don't say this lightly - you are one of my myeloma heroes. Enjoy a pleasant rest of your late Florida summer.
Non secretory like me you can win Pat stay on track and you will win. Your column is something I look forward to. I had tandem SCT in in 2010 and today I feel like a Lean Green Fighting Machine. You will win out. My positive thoughts are with you.
Staying Strong!
Gil Siegel - Tandem SCT Non-Secretory Multiple Myeloma Human!
Thanks for sharing the news. I have been following you for a long time, and I have learned so much from your experiences. Thank you for all that you do for our community.
Pat, I'm so glad that you are home and pain free! I read all you write regularly, so I know that you have really had a long row to hoe. I echo Sean's comment, you are truly a myeloma hero. Keep showing us all how it's done!
Wishing you a very relaxing and healthy rest of the year – you've earned it!
Thanks from the bottom of my heart for all of your kind wishes! Boy, sounds like "Rumnting's" husband is handling a lot of toxicity; more than I've been. Yes, besides standards Zofran and Compazine (Ativan worked best for me in my first transplant), granisetron helped. But a little used drug (used to help bipolar patients, so use is off label), olanzapine, worked like a miracle. It even helped chasing nausea; after it had already started. Just a little pill dissolved under the tongue. A real find! Best of luck to you both!
Glad to hear you are home early! Hope that your recovery goes well; one day at a time! My husband is on Day 5 of ASCT. All is going as expected, both good and bad. He's in Boston at BWH and the care is superb. I know he's in good hands, but there's no place like home!
Best of health to you and stay strong!
Aloha Pat,
You are a walking talking inspiration for the rest of us! Your ability to persevere is amazing. Congratulations on losing the pain; that must be quite a relief.
Thank you for sharing your story. It helps a lot.
GREAT LUCK going forward.
Aloha
Tom
Dear Pat, so happy to read your column. I echo all that has been said and hope you continue to progress and remain confident. Love and prayers.
Marti
So happy to hear you are home. You are one of my myeloma heroes also.
Sharon Murphy.
Good luck to your husband, Susan! Been there, done that. Great to hear from everyone. Its helping me get through another 20mg dex; rinse, repeat tomorrow...
Greetings Mr. Killingsworth,
So glad to know that your transplant process turned out as well and as convenient as it did.Wish you all the very best for your upcoming visit to the doctor. So happy to learn about the positive signs. May God heal you fully and may you continue to light up our lives with hope and positivity!
Wish you the best Pat. Take care.
Glad you have no pain! I had non secretory MM and had a allogeneic BMT in 1985. It has not always been easy, but I am alive and well 30 years later!
Congratulations Pat! I so glad to hear that your pain is gone and that the transplant went well for you.
Good luck moving along with the SCT follow up! Your willingness to share is really helpful. Thanks for all that you do for the myeloma community!
Appreciate all of the kind words! Angela's comment sticks out, doesn't it? I know several long lived allo survivors like you, Angela. Too bad it can't be replicated reliably; I know many more that go through so much only to see their myeloma return within months. Maybe genetics will help docs figure out who best candidates are. Or T cell combo therapy will help up the success figures. You're one of the lucky 10-15%. Probably more like 1% considering how long you've lived. Play the lottery?
Hope to see many long term survivors in the future! There are too few today.
Great news that you don't have any pain. I'm guessing that those nasty lesions are healing. Such good news.
I see my doctor tomorrow to try and figure out my next step since Pomalyst didn't do much for me
Hi Pat,
So happy that you weathered the storm. Transplants are tough enough without having to go through the infections you encountered. But now you are home and on the road to recovery. Maybe the myeloma will stay knocked down with this transplant. Let's hope and pray.
Thanks for inspiration and strength.
Regards,
Larry (your friend from NY)
Fantastic news Pat, I am so happy for you and Pattie. Sharing your experiences will help all of us. You are a trail blazer. Wishing you the best on your follow up.
Ron
Sounds like our prayers were answered..Glad to hear the good news...Ralph
Glad you are home and that it went well for the most part. We always felt like the great escape when we got tongi home. Hugs to you and Patti.
Lori, so long since I've heard from you! Hope all is well with you and David. Hope you're doing well, too, Ron. Thanks for reading and thinking about me Ralph and Angie! Larry from NY and I had a long phone conversation a while back. Great guy! Larry, I'm guessing you're doing great! Christina, good luck with your next step. I understand how disappointing it can be when one of the major new drugs doesn't help much.
Pat - so glad you are home, recovering and feeling no pain. How wonderful for you and Pattie. It sounds like quite an ordeal but your experience will be of great value to everyone getting ready for a stem cell transplant. It is so selfless to share the really unpleasant parts of your experience, like the diarrhea, nausea and pain. My husband goes into the hospital quite soon for his first stem cell transplant, and as his caregiver, I so appreciate what you went through in order to better understand his experience. You also give us much hope as a long term survivor. Thank you!
Thank you so much for letting us all share your experience. We will all be helped somewhere down the line with all the detailed info. Plus the info on your particular doctor's different approaches and add-ons for the transplant. Good to know for some of us later on. Don't know who said it, but there's more than one way to skin a cat. Treatment of myeloma requires such an outlook.
Oh, so sorry about the infection. So draining after a transplant, wow. But it is so wonderful to know you are through the transplant process, have returned home, and are now without pain. That is the best positive sign! Hope you and Patti and up and at 'em with some enjoyable times ahead. God bless you both.
You sound so good Pat for just one month post transplant. So happy your pain is gone. I know these infections can be a real nasty ordeal. Doing a transplant and just loosing a month is not a bad deal at all. Thank you so much for sharing your experiences. You and your wife are bravehearts.
I'm pleased that sharing my experience can help you and your husband prepare, Patty. Christel, if it were only a month. I'm just starting to rehab; my muscles will take months to recover, slowed by the dex, which tends to break them down. The mask we're implored to wear for 100 days is a reminder. Yep, just don't get sick. I remember getting a common cold six months after my first transplant and man, did it HURT! Yes, I think I'll be lucky this time. Feeling back to normal in matter of weeks. But many don't feel like themselves for a year or more. As long as it works, right?
Dear Pat
I can't believe your courage, persistence and optimism as you went through what sounds like a very tough experience. Thanks for reporting on so much of it. You are truly an inspiration for all of your mm fellow travelers.
It must feel so great to be home again! And it does sound like there's a lot of reasons to expect the best outcome, for which you will be in my prayers.
No pain! Wow. That is truly a gift.
The week after Labor Day--circled in red and highlighted on the calendar, no doubt! Here's to positive progress and positive results, Pat! (Gotta love a Hail Mary pass!)
Pat,
I was wondering how you were doing after the transplant. Good thoughts
on the Hail Mary! Hoping for a good day for you and your wife.
It is great to be home! My peripheral neuropathy is getting worse; darn thalidomide! One of the arguments my myeloma specialist is making for me to transplant again; he wants to hit myeloma hard again without risk of PN ...
Prayers and thoughts going your way ... Your honesty and courage help me every time I read your updates.
I am a 12 year winner I had one auto transplant Feb. 4, 2003, thur Seattle Cancer Care, I celebrated my 66 birthday Irecovering from my transplant in the hospital. I've been healthy ever since, I see my oncologist every 4 to 6 months.i was stage 3.
Wishing you the same great outcome.
Fantastic news that you have no pain, it is a really good sign. Your news has put a smile on my dial.
Gloria, you sure are a winner! Testimonials like yours are the reason specialists push stem cell transplants so hard. Unfortunately, the average response rate is barely two years.
Dear Pat, Average is a word I don't like. It's average for everything there is medication for. Whether cholesterol, thyroid or anything else. So many variables go into average that it hardly applies.
I like to think we are above average and our results will be better. Keep up your positive attitude that brought you this far and we will keep pulling for you. I know your journey is hard and my thoughts and prayers remain w/you.
Marti
Just read your column. Happy to hear that you are free of the pain, and home. I am three years post transplant. I was in hospital for three weeks isolation and I think the nausea was the worst side effect to deal with. You will be in my prayers for your next appointment after Labour day. Take care and stay positive. Diana
I like your enthusiasm, Marti. But take it from a guy who's first transplant failed (I got zero months, not two years), we can't always count on above average results. Sorry, I'm just saying...
Thanks for the kind words and support, Diana! I need all the positive vibes I can get!
Escribo de Venezuela y estoy feliz con su relato, siempre lo leo y solo hoy me animo a escribirle, ..Que animo y mucha salud para ud.debemos pensar que las estadisticas no cuentan a todos...algunos quedan fuera, y siempre mantendremos la esperanza.!!
Dear Pat, I see now I came off as insensitive and I apologize. Please forgive me and try to understand that I have not yet gone through the pain and suffering you all with full blown MM are experiencing. I hope your PN is getting better. Please keep us updated when you can. Love and prayers Pat.
Marti
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