Dear Members of the Breastcancer.org Community,
All of us feel shocked and upset by Robin Roberts’s new diagnosis of Myelodysplastic Syndrome, a rare complication of chemotherapy. This past Monday, she shared her situation with her Good Morning America family — and the sympathetic reaction in our Breastcancer.org community has been immediate and extremely touching. As co-survivors, we all feel an extra special connection to her. I’ve been Robin’s guest on Good Morning America multiple times. We’re sad and troubled, worried about her, and also worried about whether this could happen to us.
Plus, given how rare this type of problem is, few of us know what this diagnosis means, what’s involved with her treatment, and her chances of a full recovery.
Myelodysplastic Syndrome is a disease of the bone marrow, which is located inside certain bones. The bone marrow is responsible for making your blood cells, including:
- white cells that fight infection
- red cells that pick up oxygen in your lungs and deliver it to your tissues
- platelets that help your blood to clot and prevent bleeding
These cells are sensitive to chemotherapy, and their levels can drop after each cycle of chemotherapy. Special growth factors can minimize their decline. But after treatment is finished, your blood levels recover and get back to normal patterns of growth.
Rarely, chemotherapy can spark a serious complication in the bone marrow long after it’s been given, called Myelodysplastic Syndrome. Cyclophosphamide (also known as Cytoxan), a common form of chemotherapy used to treat breast cancer, is most closely associated with this rare problem. Radiation therapy can increase this rare risk a little bit. Myelodysplastic Syndrome means that the bone marrow contains abnormal cells, such as too many immature blood cells or defective mature cells. There may not be enough normal blood cells available to protect the body from infection and bleeding and to provide enough oxygen to fuel the tissues. Myelodysplastic Syndrome is different from other conditions that you may of heard of, like aplastic anemia — when the bone marrow is empty — and leukemia, when the bone marrow is replaced by abnormal blood cells that are growing out of control.
Treatment is necessary because the abnormal bone marrow cells may fail to perform their job, putting Robin’s life at risk. Also, Myelodysplastic Syndrome can get worse and turn into leukemia. The goal of treatment is to get rid of her abnormal bone marrow cells with chemotherapy and to replace them with new healthy bone marrow cells from a donor. This process is called bone marrow transplantation. Lucky for Robin, she has a sister who is a perfect donor. This means that her bone marrow cells are very similar to Robin’s and so it’s likely that Robin’s body will accept them and not fight and destroy them.Robin announced that she started chemo this week.
All of us would like Robin to know that we care about her and that we wish her only the very best. We want to be a source of expertise, encouragement, and inspiration throughout her journey and beyond.
She announced that she plans to work throughout her treatment, as she is able. We know what a super-woman she is, but we also hope that she doesn’t push too hard and that she takes the time she needs to stay well. Along the way, we will follow closely with you and continue to send her our hopes and best wishes.
We invite you to share your thoughts, concerns, and well wishes in the comments area below.
My prayers go out to Robin Roberts. I pray she has complete healing. I just finished my Chemo treatments and I too had cytoxin and adrimycian. I pray that we both have complete healing. I start radiation this month. It broke my heart to hear that Robin would once again have to go through Chemo and now also bone marrow transplant. The lord can work miracles and I will be praying for her to be blessed with complete return of health.
I am concerned for Robin, too and wish her the best. Hearing Cytoxin is the likely culprit, however, makes me tremble. I, too, am taking Cytoxin (CMF) for 24 weeks. I am in a gray area and chose to have what is nicknamed around here as Chemo-lite. Just what is this small percentage who later come down with MDS? I knew there were risks but this was not explained in detail. I have to have radiation, too. I have to wonder if I’m doing my body more harm than good since there wasn’t a 100% need for all of this in my case.
Thank you Dr. Weiss for putting this into words we can understand. I was one of those who were very upset at the news, and I confess some of that was selfish, wondering what kind of chemo Robin had undegone, and just how common this complication was. I am still very concerned for Robin, but selfishly comforted by your explanation. She will be in my thoughts and prayers for complete well being during and after her treatment.
Second malignancies after chemotherapy are rare. Some studies have shown that the risk is about 1 in 1,000 women; other studies say the risk is lower. The bottom line is that it’s very rare for this to happen to someone after chemotherapy for breast cancer. Examples of chemotherapies used in the treatment of breast cancer that are associated with the rare side effect of Myelodysplastic Syndrome include: Cytoxan (chemical name: cyclophosphamide) and anthracyclines. Anthracycline chemotherapy includes doxorubicin (brand names: Adriamycin, Doxil), daunorubicin (brand names: Cerubidine, DaunoXome), and epirubicin (brand name: Ellence). The timeframe for developing this very rare complication tends to range from 2-10 years after treatment. Myelodysplastic Syndrome can be detected from a routine blood test: the “CBC” (complete blood count). Most women receiving treatment for breast cancer will never experience this complication.
I’m so sorry for all that Robin has to go thru–and I’m certainly glad u explained it so well- I truly hope her sister is the answer. This sounds so much like platelets that people get too. To many problems even after cancer treatment–It’s such a shame. Hopefully we can follow Robin and her triumphant come back.
In 2006 I was diagnosed with breast cancer……lumpectomy, chemo, and radiation. In 2008 I was diagnosed with AML due to chemo treat ment. Chemo, stem cell transplant. 2011 relapse….chemo, full body radiation , stem cell transplant. Like Robin my sister was a perfect match. But it is not as rare as it used to be. Incidences of chemo related leukemia for breast cancer patients are on the rise. The medical profession needs to explore why the increase.
I had breast cancer in 2007 and finished my first 4 rounds of treatment of Adriamyacin-Cytoxin in June 2007. Literally, as I was laying in bed experiencing the after effects of the “red devil” (nickname several other patients gave the A-C combo), Meredith Viera reported on the Today show about news from the ASCO Conference.
She said that “exciting news from the ASCO (amer society of clinical oncology) conference for early stage breast cancer patients.” The researcher who discovered the Her-2 gene and subsequently developed Herceptin, had completed a study that showed that the A-C combo only works in 8% of the patients who receive it.
Why is that combination still being done? I’d heard that patients in California were already being switched to Cysplatin-Cytoxin or other options.
What concerns me is that as an early stage, triple negative patient, I went to two different oncologists who both said they would recommend using A-C because we don’t know if you have any remaining cells in your body and better to be sure than to take a chance. What are the chemotherapy drugs for breast cancer that have the least side effects?
My hair has never really grown back and I am more concerned about potential lung/heart issues that may occur down the road since they’ve been using the A-C for over 20 years and if it only works in 8% of the patients and has a 1% chance of heart damage, it doesn’t seem worth the “chance” that it may work.
They missed my MDS and I had developed Acute Myeloid Leukemia (AML) before I was diagnosed only 7 months after my breast cancer treatment ended. I had Cytoxan, Adriamycin, and radiation for “triple negative” breast cancer (same kind as Robin Roberts). The breast cancer treatment was a walk in the park compared to treatment for MDS and leukemia. It has been a nightmare of ongoing chemotherapy and transfusions. A stem cell (bone marrow) transplant is even worse. I am glad that Robin Roberts has shed a light on this rare, but terrible side effect of breast cancer treatment and I wish her well.
I’m sad and concerned for Robin and that she must once again go through the ordeal of treatments. I watch her often and admire her. I continue to hope for her and all of us survivors. Hope is important for her to retain, and prayers, good thoughts, and positive energy for us to send her way. Robin, we surround you with positive energy.
Thank you Dr. Weiss for always providing such important information, my thoughts and prayers goes out to Robin and her family as she begins another battle of which I am sure with her strength and courage she will win!
You state that the Myelodysplastic Syndrome is found through a routine CBC, can you advise what areas of the CBC shows up abnormal? Every time I have a CBC I have high lymphocytes and low neutrophils, my primary physician says this is nothing to worry about do you agree?
Thank You
Thank you Dr. Weiss for always providing such important information.
My thoughts and prayers and positive energy goes out to Robin and her family…
Thank you again
love,trishaB.
All, I really want to say is my prayers are with you Robin. I also encourage you to take time off and be with your loved ones!
I love your strength and beauty. I know you will win this one too!
I am so sorry to hear of Robins illness after such a battle. I have just had my 2nd mastectomy and would not like to have to go back and do it all again. My prayers are with Robin and her family. Stay positive Robin as it can be the key to recovery. Good luck with it all and I hope to see a new post with all good news.
I have this same thing and I thought I was the only one. They are treating me but now that I am not the only one I may ask more questions and get a second doctor to look at my case. I guess if I had been a well known person I would have known more about this sooner. I did ask my doctor when I saw the diag on a paper. I just heard this happens sometimes.
I was told my chemo treatment for breast cancer in 2003 has a 1% risk of another cancer such as leukemia. In 2006 I was diagnosed with AML and I’m alive only because an anonymous donor was willing to be part of the bone marrow registry.
My heart goes out to Robin Roberts and all of my sisters who have experienced serious illness because of the BC treatment and for all of my sisters who have expereinced a reoccurrence and/or metastasis. Breast Cancer and then its treatment S#%Ks. I live with interstitual cystitis because of the damage Cytoxen did to my bladder.
I am very upset about hearing this. When I had chemo and a very painful reaction to a shot to increase my blood cell count, I became very concerned about my bone marrow. I even called the American Cancer Society about it and asked them what the chances are to get Leukemia from this shot. It did not appear wise to me to stimulate the bone marrow so strongly to produce the white cell count rapidly. I feared that this could cause immature cells to grow. I think in the administration of chemo needs to be re-evaluated and the emphasis should be on finding a treatment that attacks only cancer cells and not the rest of the body.
I wish Robin all the best!
My thoughts & prayers go out to Robin @ this time. We all hope for a true cure to this, as well as all cancers. I have watched her through the years with hope because I was going through treatment at the same time she was, maybe 6 months behind. That rare chance of this happening has just become for real for me as have issues with last cbc taken by md & he advised contact my onco., who had me fax the lab report to them. As soon as received, they called to schedule appointment!!! Fear has hit, but will remain calm & remember, we never go alone in this journey! We have sisters in the battle that came before & will continue to go on!
Also, due other issues having, will be starting a 30 day heart monitor within a few days, this is after short term holter didn’t pickup on anything except heart rate dropping too low. Oops! Don’t know if due to 15 months of Herceptin, other chemo or left side radiation, but sure they are connected.
We will all go on!
Thank you Dr. Weiss for the important information, As a Breast Cancer survivor for 5 years, this information is very important to me, as I am in the process of doing my annual check ups.
Robin Roberts has been and inspiration to me during my journing with Breast Cancer. My prayers are with her and wish her a speedy recovery. She’s a warrior!
I chose not to go the traditional route of chemo and radiation in 2001. People called me crazy but I did great until 2006 when I found out I had ITP low platlets and in 2009 I had problems with my left hip which in 2010 I had hip replacement due to metastatic breast cancer in my bone. I have had the Zometa treatments and Femara, as well as two others. I am now on Tamoxifen as the others stopped working. I am praying for Robin. I hope a cure is found and that my daughter and granddaughters never go through this.
Love To robin courrage to all wo has this horrible disease.