Pat’s Place: Stem Cell Transplant Patients Are Brave And Determined People
Last week I returned home after spending 16 days hospitalized in the Moffitt Cancer Center’s Bone Marrow Transplant (BMT) Treatment Unit, followed by seven days as an outpatient.
I wanted to wait a week until I felt better and gained some perspective before I shared details with you about my experience undergoing a stem cell transplant as treatment for my relapsed multiple myeloma.
But as it turns out, I’m not the story. The story is the dozens of fellow stem cell transplant patients I met along the way.
Some of them were recovering from an autologous transplant like mine. An autologous, or auto, transplant is where someone receives his or her own previously harvested stem cells back after undergoing two days of high dose chemotherapy.
It didn’t take me long to figure out those of us who underwent an auto transplant were the lucky ones. Sure, most of us battled a number of different serious side effects, including nausea, diarrhea, loss of appetite, mucositis (mouth sores), dehydration, fatigue, and hair loss.
But those who underwent allogeneic, or donor transplants, were the ones fighting a much more serious battle. An allogeneic, or allo, transplant is where someone undergoes high-dose chemotherapy and then receives stem cells from a matched donor.
Many more types of serious complications can arise from this type of transplant, including pneumonia and graft-versus-host disease, in which the donor cells recognize the patient’s cells as foreign and attack them. Additionally, this procedure often includes post-transplant chemotherapy, making the process a lot more complicated and difficult to endure.
I could hear the struggles as I walked up and down the halls of my unit—people coughing and moaning.
I saw it in the scared and concerned faces of family members and caregivers. I was out of there in 16 days. Donor transplant recipients stayed confined to the unit, on average, over twice that long.
Auto or allo, everyone was expected to walk several times each day. It was during my daily walks that I had the chance to meet a number of my fellow patients.
I can’t find the words to express how brave my fellow transplant patients are. Brave and determined. Just thinking about our time together brings tears to my eyes.
Sure, I had my share of bad days when I was nauseous and really sick. But I can only hope my new friends in the BMT Treatment Unit make it through as easily as I did.
Feel good and keep smiling! Pat
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Having had two stem cells transplants within six months, I understand what you are saying. I was with many Multiple Myeloma patients at UAMS, in Little Rock, AR. at the Multiple Myeloma Institute for Research and Therapy. They provide out patient treatment to all almost all patients, to prevent exposure to germs and to force patients to get out of bed and dressed and go to the hospital. Once there, we waited together and bonded and then were treated in rooms with two to four people and bonded further. You are so right. Very little complaints about personal struggles and almost universal bravery. It was the support of other patients that was so helpful. It is amazing what you can learn from fellow patients and how encouraging it is when you can see others survive and thrive. It made a big big difference.
Glad you are on the other side now. Hope you have a complete response as
I did. Still holding after more than a year.
Congrats to you, Pat!! I was diagnosed at the age of 51 on 11/3/10, am female and have been in complete response for months. But my stem cells were harvested for a rainy day. I am reading your blogs with a idea of what lies ahead for me. As my heart went out to you during your process, I must say this one brought tears to my eyes. We are a strong, brave bunch. But those who undergo what you have, are incredibly strong. I hope when it is my time to start the process, I will have the strenght to carry me throught with the help of those around me.
Continued good luck and I look forward to reading more of your thoughts.
One step in front of the other, keeping your eye on the prize,
Joanne
Must feel good to be done with the hardest part of asct...and you even managed to meet new people along the way! Even if it is the less complicated transplant, each person reacts differently...nice to hear that you are done with it and feeling okay.
So happy that you have made it this far Pat, and may you have only positive thoughts for the weeks to come!! I have had both auto(twice) and allo transplants in the past 9 years. You are correct that the allo procedure brings more sickness and concerns with gvh. But we do make it through, with determination, good medical care and faith! We draw strength from others who have gone through similar treatments. Your articles are very inspiring for me and I look forward to hearing about your continuous progress as you recover.
Wishing you all the best,
Cathy
Pat , I really look forward to reading your weekly column. I
was diagnosed in Jan 2010 at age 51. Had my asct in June 2010 and
my numbers are looking good right now. While dealing with the reality
of this disease I appreciate the hope and optimism the Myeloma Beacon
provides. Hang in there and all the best
Hooray Pat! Congratulations on completing your ASCT. I had mine in March 2010 and walked away with the same feelings of love and concern as you for my fellow transplantees. It taught me one of big lessons I've learned about living with myeloma: To be less concerned with myself and more concerned about others.
Cheers and Good Health,
Chuck
Welcome home Pat. Thank you for sharing.
I wish you a long stretch of happiness, peacefulness, and healthfullness.
Linda
I appreciate hearing from all of you! Your kind words and experience help me make it through the day! Pat
So glad to hear you are doing well Pat.
Ah.. finally! I was getting quite worried about you, Pat. Hadn't heard anything in quite a while. Glad you made it through as quickly as you did... and interesting interpersonal experiences you describe.
I start my ASCT process next week, with the actual transplant being scheduled for Sept. 15, assuming everything goes according to plan (seems like a long process, doesn't it?) Having read what you've dealt with the past many weeks will no doubt prove instructive... so thanks for keeping us posted!
Welcome home Pat. The bonding amongst fellow MM Warriors is indescribable and understood. Now you know why I'm saying from time to time that I miss my "myeloma buddies". Whenever I reunite with them or talk to them on the phone, I just feel buoyed. Take care of yourself, stay vigilant, hugs to Pattie, I hope she had some good bonding as well. You've been missed, but take your time and let your body rest.
Good luck, John! Suck on a lot of ice the two days you get your melphalan infusions--and I hope you don't have as much trouble with nausea as I did. But so far, so good!
Lori and Sharon-
Your positive energy is helping me get through my sour stomach and heart burn tonight...
I've been a little out of touch, but so glad to hear you made it through your auto SCT so well and I am intending that your road to recovery is smooth and brings you back into maintenance for a good long time. SEnding you healing energy from the jungle....
Thanks, Sandy!
Hi Pat, welcome to the Auto SCT Club.I was diagnosed in 2004 at 57 and had my SCT in 2006. It took me about 12 months to get back to my pre transplant level of fitness, i.e playing Badminton for an hour 3 times a week with my wife and other family members, until my wife died very unexpectedly in 2010 of Pancreatic Cancer. After a short time I was back playing twice a week, but now having to tie the Racquet to my hand due to Arthritis. I am currently awaiting surgery for a broben bone on my right shoulder ( not Myeloma related) , my badminton arm, and when that is sorted, I will be back to Badminton. It is what my wife and I did for 42 great years. What I have tried to say above is, that I will not let Myeloma stop me doing all the things I loved doing before I was diagnosed. I wish you and all with Myeloma the very best for the future.
I so admire your spirit, Tom. Maybe I gave up running, skiing and golf too easily. But I just had so many holes in my bones, didn't seem worth the risk. I feel amazingly good except for gastric issues which are frustrating and prevent me from eating on a schedule which I believe would speed my recovery. So sorry about your wife. Getting old--and cancer--are really a pain, aren't they? Best of luck! Pat
Hi Everyone...it's great that there is this forum for people to relate to and share experiences. tHe stem cell transplant was a difficult time in terms of chemo side effects and exhaustion, but 18 months later, am back to a new normal. I did have several vertebral fractures at the time of diagnosis and subsequent skeletal surveys (X-rays of the whole self) showed extensive bone damage, so I don't attempt high impact activities like running... just nervous I guess. Am still getting pamidronate infusions regularly to help encourage bone growth. But I do walk a lot, and do aqua-fit in a swimming pool, and light gardening and even cycling on flat pathways (not big hills where it would put a lot of strain on my back). Am very lucky to have my husband helping me with all kinds of things..even lifting bikes onto a car bike rack, since I really can't lift heavy items. Also, I can go to a gym and use their treadmills and stationary bikes and lift light weights of about five to ten lbs. I don't feel self-conscious there since lots of people with other health problems are trying to stay fit too! I guess the rule of thumb is 'if it hurts, don't do it', so have learned slowly what is feasible to do and what is not!! in a way, the loss of one's immune system is the worst thing about SCT .. it takes a couple of years to be eligible for all of the vaccines to be re-injected, and for your system to build up immunities again. It's like being a newborn again in those terms, so have to be uber-careful about not getting infections during the SCT time. By the way, our local support group just put on a walk/run event to raise money for Myeloma research here at the University of Calgary and it was very successful...
Glad you are so active and doing so well, Nancy! Here's hoping you have many years of myeloma free living- Pat
Hi, I was diagonosed with MM June 2009. To date have not had treatment but bone pain and subsequent Pet Scan and bone marrow biopsy revealed pathological fractures and advancing myeloma. Doctor suggested firstly Zometa, and also combination treatment of cyclophosamide, dexamethasone and Thalidomide with a view to stem cell transplant. If this needs to be done I will get through it, but as you would all also do, have copiously read articles and seems some merit in having Zometa as it helps with bone and also may be anti cancer. Wondering if you have an opinion in relation to this as I have been contemplating this alone. There seems to be wonderful research which may offer alternatives to treatment offered.
Cheers
Bronwyn
Bronwyn-
I'm guessing that you aren't being treated in the United States? I used Zometa or Aredia early on and continued every several months for over four years. The cytoxan, dex and thalidomide combo is a bit unusual.. Why not Velcade and/or Revlimid? But this type of thing is well beyond the scope of what I can help with. All I can say is good luck and give some thought as to whether to proceed to transplant right away if your therapy works, or if you should wait and transplant after first or second relapse- Pat
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