Stem cell transplants?

[Sherryg683]

I have read where several of you have had stem cell transplants. Exactly at what point in treatment are these done and why are they done. Just not sure what they are for but want to know about it, in case I ever need to pursue that option..sherry

[madubois63]

I guess I could answer this one better than anyone...I copied an article, but will add my 2 cents in. For those that don't know, I was diagnosed with stage IV Inflammatory bc in 2000. Did my treatments and achieved remission. After 4 years, The bc metastasized to my lungs and liver. I took lupron (once every 3 months), Femara (daily), Carboplaten (3 weeks on - one week off), Taxotere (3 weeks on - one week off) and Herceptin (weekly). This got the met's under control, but we just didn't know when to stop treatment. My body decided for me. My counts dropped and no matter what shots (procrit, nupogen...) they gave me, they did not recover. I got a 7 1/2 hour nose bleed and ended up in the hospital for blood and platelet transfusions. Then I got my first bone marrow biopsy - ouch! The chemo gave me Acute Myeloid Leukemia. They don't tell you chemo can do that, do they??? Anyway, there are different reasons for a transplant and different levels of seriousness. Mine, of course was for the worst reason. My DNA mutated and was seriously damaged. They could not use my own marrow (auto), and I had to search for an unrelated donor (allo). I was EXTREMELY lucky in finding a matched donor from the International Donor List. "She" is a 10/10 perfect match from somewhere out of the U.S. She is 25 and has never been pregnant - very healthy. Her tissue matches mine (10/10), but our blood type was different (My blood type has changed over in the last 2 weeks, and I am now technically her - my DNA changed months ago).

Some years ago, stem cell transplants were being used as first line treatment for Inflammatory BC. I have a friend that used her own bone marrow and is 10 years out and doing great, but many using this method did not survive and this treatment plan was quickly dropped. when I got the IBC, I did not even hear of BMT's. After I had the relapse, I did research and inquired about a transplant. I did not qualify at least not until the leukemia.

This was the hardest treatment (and very long). Each day brings something new....
A stem cell transplant is a complex procedure to replace unhealthy stem cells with healthy ones. Find out what the process is like, including conditioning, and what complications may arise.
When you think of a transplant, you may have an image of a major surgical procedure to replace a diseased organ. But stem cell transplants don't involve surgery. And the "organ" involved is bone marrow — not a solid organ such as a liver. If your bone marrow stops working, your body won't produce enough healthy stem cells. And that means you may not have enough healthy white blood cells, red blood cells or platelets, putting you at risk of life-threatening infections, anemia and bleeding. That's how the leukemia started for me - I caught every cold/infection that breezed by...
A stem cell transplant is the infusion of healthy stem cells into your body. If all goes well, these healthy stem cells take hold in your body and begin normal production of blood cells. Although the procedure is generally called a stem cell transplant, it's also known as a bone marrow transplant or an umbilical cord blood transplant, depending on the source of the stem cells.
What are the reasons for a stem cell transplant?
Stem cell transplants are used to treat people whose stem cells have been damaged by disease or treatment of a disease. Stem cell transplants can benefit a variety of both cancerous (malignant) and noncancerous (nonmalignant) diseases. For instance, in aplastic anemia, a noncancerous condition, your bone marrow stops making enough new blood cells. A stem cell transplant destroys the dysfunctional marrow, and healthy stem cells are infused. If all goes well, the new stem cells migrate to the marrow and begin working normally. Similarly, in leukemia, the unhealthy bone marrow is destroyed because it doesn't work properly and may contain cancer cells. When healthy stem cells are transplanted, normal cell production can resume. In addition, immune factors in the transplanted cells may help destroy any cancer cells that remain in your bone marrow.
How do you prepare for a stem cell transplant?
Usually you remain at home until your transplant is actually scheduled. During that time, your health care team may recommend that you work on building up your strength and maintaining a healthy diet.
Pretransplant tests and procedures
Once donor stem cells become available, you undergo many tests and procedures to assess your health and the status of your condition, and to ensure that you're physically prepared for the transplant.
In addition, an intravenous (IV) catheter is typically surgically implanted, usually in your chest near your neck. This is often called a central line, and it usually remains in place for the duration of your treatment. It's through the central line that the transplanted stem cells will be infused. The central line is also used to collect blood samples, give chemotherapy, provide blood transfusions and even supply nutrition when necessary.
The conditioning process
After you complete your pretransplant tests and procedures, you begin a process known as conditioning. During conditioning, you undergo chemotherapy and possibly radiation in order to destroy cancer cells
and to suppress your immune system so that your body doesn't reject the transplanted stem cells. The type of conditioning process you undergo depends on a number of factors, including your disease, overall health and the type of transplant planned — whether you get stem cells donated from someone else (allogeneic transplant) or whether the stem cells come from your own body (autologous transplant). Conditioning generally occurs in the week leading up to your stem cell transplant. In some cases, you receive high doses of chemotherapy and total body irradiation (TBI). On the other hand, you may receive only high doses of chemotherapy and no radiation at all. The type of conditioning you undergo depends on your unique circumstances. The conditioning process may be done in the hospital or on an outpatient basis. It can cause numerous side effects and complications because your bone marrow and stem cells are destroyed in anticipation of the transplant, and even if your conditioning process is outpatient, you may need hospitalization for side effects. Side effects of the conditioning process can include:Nausea, vomiting, diarrhea, hair loss, mouth sores or ulcers, infections, bleeding, infertility or sterility, premature menopause, anemia, fatigue, cataracts, organ failure, such as heart, liver or lung failure and/or secondary cancers. You may be able to take medications or other measures to reduce such side effects.
I first had "Induction" therapy. It was 6 days of chemo for 24 hours a day. It killed off my immune system and brought my counts down to nearly nothing. Blood and platelet transfusions were nearly constant. I remained in isolation for a month that time. I got to go home for a month, then returned for "consolidation" treatment. This consisted of 5 days of chemo for 24 hours a day. I remained in isolation for 3 weeks that time. Then came the transplant a month and a half later...
'Mini' stem cell transplants
A less intense conditioning process is available through what's known as a "mini" stem cell transplant. It's also called a reduced-intensity conditioning transplant or a nonmyeloablative transplant. Reduced-intensity conditioning doesn't try to kill all of the cancer cells that may be in your body. Instead, it relies on the donor's immune system cells to fight your cancer cells. A less intense conditioning regimen may seem attractive because it may pose fewer life-threatening complications. But this kind of transplant isn't appropriate for all situations. Mini stem cell transplants are typically used only for people who can't endure the harsher conditioning regimen, such as older adults or people in poorer health, and for people whose disease isn't rapidly progressing. In some cases, they may not be as successful as full transplants.
What can you expect during a stem cell transplant?
Stem cell transplants are typically performed in specialized medical centers. These centers generally have dedicated transplant units, with a team of specialists caring for you. This team often includes doctors, transplant nurses and coordinators, mental health professionals, occupational therapists and dietitians. I had to have tons of tests and evaluations, including having 3 teeth pulled just prior to the transplant. No room for infections - they just yank them! <!-- mcimagecaption --><!-- /mcimagecaption -->Stem cell transplantation involves infusing, or injecting, donor stem cells through your central line. This usually takes one to five hours. The transplanted stem cells make their way to your bone marrow cavities, where they begin creating new bone marrow and stem cells. It can take several weeks, though, for your blood counts to begin recovering. If you receive bone marrow or blood stem cells that have been thawed, you may notice an odor wafting in your room for a day or two after the transplant. This is caused by the substance used to preserve the cells. Just before the transplant, you may have received medications to reduce the side effects the preservative can cause. These side effects include:Nausea, Fever,Chills, Hives.
Not everyone experiences side effects from the preservative, and for some people those side effects are minimal. The actual transplant was easy. It's just like a transfusion - very uneventful. It's everything that comes before it and after that can kill you...
What happens after a stem cell transplant?
As you wait for your new stem cells to begin functioning, you will be at risk of such complications as infections and bleeding. In addition, you may still be recovering from problems related to conditioning. Depending on your treatment protocol, you may stay in the hospital until your blood counts recover or you may return home but remain under close medical care. Some people who have inpatient transplants are able to leave the hospital within three to five weeks, but others may face much longer hospitalizations. Some transplant facilities require transplant recipients to remain nearby for 100 days to allow close monitoring. In the days and weeks after your stem cell transplant, you may have many of the same kinds of tests and procedures to monitor your condition that you had before the transplant. You may also need supplemental nutrition to compensate for nausea and diarrhea. To combat various complications, you may need to take numerous medications. You may also need periodic transfusions of red blood cells and platelets until your bone marrow begins producing enough of those cells on its own. It usually takes about a full year for your blood cells and immune system to recover to normal levels. In general, recovery from a stem cell transplant that uses your own harvested stem cells is quicker than one that uses donor stem cells. My transplant was done 8 hours away in Buffalo, because my hospital does not do auto transplants yet (you have to earn that and they have about a year to go) I had to stay in the hospital for 6 weeks and near the hospital for 2 more weeks. I had a transplant doctor near home, so I was able to transfer care home. I then had to go to the cancer center a LOT.
Preventing infectionsDuring hospitalization and once you return home, you must take special precautions to prevent infections.
These precautions include:
Wearing a filtration mask to protect against airborne bacteria and viruses
Avoiding contact with people who have any symptoms of illness, including colds
Avoiding crowds
Avoiding zoos, parks and areas heavily populated with birds
Not swimming or using a hot tub Not even a bath...
Having someone else clean your home, particularly bathrooms and sinks
Be alert for signs of infection and report them immediately to your health care team. Such signs may include feeling ill, loss of appetite, nausea, fever, runny nose, sore throat or cough. VERY, VERY important! I had cleaning crews come in and clean EVERYTHING!!!!
Home-based care
With your blood counts recovering, you should begin feeling better. Mouth sores and diarrhea may go away or become less severe. Your appetite may improve and you may begin feeling physically stronger. Even after you go home, you'll need regular medical care to monitor your condition, though. Your health care team will provide instructions about any special care or precautions to take once you're home.
Emotional and lifestyle issues
The diagnosis of a life-threatening illness can generate enormous stress for you and your family. Coping with side effects, prolonged periods of isolation, low energy and limited activity can lead to feelings of anger, grief and depression. These are normal responses to a prolonged and sometimes difficult treatment period.
Members of your health care team can address the emotional aspects of your stem cell transplant. Physical and occupational therapists can advise you on relaxation, increasing your endurance and exploring new activities. Mental health professionals, social workers and chaplains can help you cope with anxiety and depression, and help you remain positive.
What are the risks of a stem cell transplant?
A stem cell transplant poses many risks of complications, some potentially fatal. Although some people experience few problems with a transplant, others must endure frequent tests and repeated hospitalizations.
Complications that can arise with a stem cell transplant include:
Graft-versus-host disease I got sever chronic GVHD of the liver and ended up back in the hospital to get ACT (horse serum treatment). there are other treatments, but this was my best shot. If this didn't work, I was given less than a year to live. But I think the doctor was being kind. I don't think my liver could have held out too long and there was no way anyone would do a transplant on me for many reasons.
Stem cell (graft) failure, Organ damage, Blood vessel damage, Cataracts I have to be diligent on this too., Secondary cancers, Death
Balancing the pros and cons of a stem cell transplant
A stem cell transplant can cure some diseases and put others into remission. Most people who have a stem cell transplant expect the procedure to extend their life, and it often does. Some people sail through stem cell transplantation with few side effects and complications. Others experience numerous problems, both short- and long-term. The severity of side effects and the success of the transplant vary from person to person. Most people who have a stem cell transplant and don't have a relapse of their disease go on to enjoy a good quality of life. Many are able to return to work or school and resume their normal activities. My plan!!!! If you have any specific questions that were not covered, please ask. I pray that no one needs to go this route, but I hope this helps someone.

[dorinda]

Wow!!! Thats Was Really Informative. I Also Wanted To Know What Stem Cell Transplant Was About. If You Had Not Gotten Leukemia Would You Had Still Done It? How Long Were You On Chemo Before You Got Leukemia? I Have Been On My Now For 8mons. But No Nasty Side Effects. Is It Usually The Last Resort For Someone? You Are Really A Warrior. I Am So Proud Of You. You Have Paved To Road For Alot Us. Thanks Take Care Dorinda

[Sherryg683]

Thanks for the great info, and it was in a way that I could understand. I had goodled "stem cell transplants" and couldn't understand half of it. I was thinking if it was something that worked well, I would ask my Oncologist about it. Now I see that I really don't want to even consider that unless it was completely necessary. Can't believe you went through all that MaryAnne, the isolotation part would probably kill me by itself..sherry

[madubois63]

Dorinda - If I did not get the leukemia, I wouldn't be eligable for a transplant. I was on chemo for the breast cancer from October 2004 - December 2005. Around Nov/Dec things started getting hairy. My counts dropped and I'd miss a treatment. I'd get shots to bring up my counts, but it just didn't work. Then my counts moved and I was able to get a some chemo in, but it almost killed me (I forgot about that episode). After that the bone marrow biopsy was ordered. MBTransplant is not first line treatment/cure for leukemia. Not everyone is able to survive it or handle it. Ten years ago, I would have been considered to old to get the transplant, so things have come a long way. I hae to interview with the doctor to see if they'd accept me. It is very serious stuff, and extremely expensive. I am lucky enough to be poor. I have medicare and medicaid. They paid for mostly everything. I also had help from a few fantastic organizations. It cost over a half a million dollars to keep me alive. I don't know/think they are using it for bc at all and I doubt insurance will cover it. I know someone that haed to pay out of pocket for mostly everything. Her mom left her money, so that is what she did with it. My friend has bc that spread to her bone marrow and transplant is not an option. I know there is a difference bet ween bc in the marrow and leukemia, I just couldn't explain it. I don't know if I've paved any roads, but maybe after my record, they'll accept other hard cases before they judge to easily.

Sherry - this is the extreme, and I pray no one ever has to consider doing this. I did pretty well all things considered. I was walking and excercising the day after the transplant. They made me get up. Me and my infusion pump walked around the nurses station a little every day until I was up to 2 miles and doing the olipical bike. They had someone come to my room and do pilates and weights with me. Some people that had transplants at the same time did not fair so well. So, yes this is a last resort thing. The isolation is enough to make you want to jump out of a window. My family and friends were 8 hours away. My sister flew in to settle me, a week later she came in for the transplant, she came back 3 weeks later for 2 days and then she drove my mom and kids in for Thanksgiving. She's got twin 2 year olds - pretty amazing sister!!! I had a total stranger come visit me. Her mom and I met on another bc board, so she sent her daughter with food and gifts. Then another friend from the bc board took me to her home and babysat me for 2 days when my family couldn't get there. Pastoral care came and visited and brought gifts (they sent Christmas gifts and food to my home). The hospital even provided laptops (I had my own), wigs, games, books, massage therapy, and crafts to keep us busy. It was no vacation, but they really were great. Thanks for making me think of all these things I've forgotten. Roswell Park Cancer Center in Buffalo, NY really did a great job in covering all aspects. They have dentists and therapists that come right to your room if need be. I have to go back and visit...enough rambling.

[Sandy in Silicon Valley]

Hi, Sherry (and kudos, Maryann, for posting such a detailed, informative description in addition to your personal experience with the ordeal!) -

Stem cell transplants were being used as a "last resort" for Stage IV bc patients back in the 1990's. Then some meta analysis of data collected in a number of studies indicated that more Stage IV patients actually died, or became very ill, from the treatments, than those who did not undergo stem cell transplant.

Still, there are some diehard adherents who are still recommending this very difficult and risky treatment, and there are patients who've undergone the procedure, and have lived many years since, and think that the procedure saved them and has been keeping them alive. So it's definitely a mixed bag.

I had a good friend back in the mid-1990's, who'd managed to recover from several recurrences - to her liver, lungs, bones, lymph system, but she finally exhausted all of the then-approved chemo regimens. She was rejected by a few clinical trials, and finally arranged to have a stem cell transplant. Besides that she was quarantined for more than a month, couldn't go out after that - she also became weaker and weaker, when she should have gotten better, and finally succumbed. Whether her death was due to the stem cell transplant, the cummulative effects of all the treatments she'd had before and/or her extensive bc mets, or her overall weakened condition, no one seemed to know. But her last few months of life were really miserable.

This topic has been discussed several times on the bcmets.org listserv - if anyone's interested in exploring it further, past posts are in the archives there, and can be searched.

(((hugs)))
Sandy in Silicon Valley

[Kim in CA]

Ten years ago when I had my Stem cell procedure, it was the most agressive treatment available, and that's what my doctor said I would need to fight my agressive type of BC.

When I recurred a little over 4 years later, we were of course devastated. The stem cell procedure was so tough on me that I thought for sure I would be cured. I didn't know how much more chemo I would be able to withwstand, if I ever were to have a recurrence. Luckily, I was able to tolerate the Taxotere and Herceptin that brought me back to NED! If only the Herceptin had been available to me in the first place.

I understand that they no longer do Stem Cell procedure for BC because it wasn't shown to be any more effective than other more conventional therapies. I still keep telling myself that it was worth all that I went through because maybe, it just bought me a little more time until the Herceptin was available.

All I know is I'm still here and VERY grateful!

Kim

[madubois63]

"I understand that they no longer do Stem Cell procedure for BC because it wasn't shown to be any more effective than other more conventional therapies. I still keep telling myself that it was worth all that I went through because maybe, it just bought me a little more time until the Herceptin was available."

Kim - Not maybe - absolutely!! I believe in never second guessing my decisions. The transplant DID bring you to Herceptin, and that is the game plan until a cure is found...staying as many steps ahead of this crappy disease as possible!!!

Sandy - Thanks for sharing about your friend. I am sorry she lost her battle. I can well understand her body not being able to recoup. I have always ignored that fact of how truly sick I've been (maybe that helped me get through). When I put it all down on "paper" and read it again, I realize that not everyone can do this, and not everyone makes it. Makes me even more greatful! Thanks for the link - I will check it out.

[Marlys]

Maryann, Your account of your journey through stem cell transplant is "textbook" and Pulitzer quality. Bravo!!. However, I am most interested in your picture. Was it taken recently? You look great. And where did you get the dog you are sitting on? Absolutely precious!
I have a dog but he won't let me sit on him. Maybe I could get one like yours. He doesn't look like he minds.
Love & hugs,
Marlys

[madubois63]

Marlys - Yes, the picture is recent. I found the Bernese Mountain Dog rocking horse in a store at the Mohegan Sun Casino in Connecticut. My dog is the same breed, so I had to have a picture. My baby is big enough to ride on (130 lb), but I doubt he'd let me...