Long-Term Isolation Poses Special Challenges after Stem Cell Transplantation

By Maureen Salamon,

Friday, October 3, 2014

Pictured: Robin Roberts & Tonya Samuel

For people undergoing bone marrow or stem cell transplants, being isolated from friends, family, and everyday life can make recovery more difficult.

“The thing I remember most about the weeks after the transplant was that everyone who came in to see me was wearing a mask. I didn’t have to wear one, but they did. Day after day, week after week, all I saw of the people I loved was the little rectangle of their faces — eyes and forehead — that the mask did not cover. Everyone who touched me was wearing gloves, and I grew to miss that, too, the feel of holding (my partner’s) hand, the touch of my sisters’ and friends’ lips on my cheek.”

In this quote from her 2014 memoir, Everybody’s Got Something, morning news show veteran Robin Roberts crystallized the sense of disconnection ubiquitous among stem cell and bone marrow transplant, or BMT, patients. Ms. Roberts — who anchors ABC’s Good Morning Americareceived a stem cell transplant at Memorial Sloan Kettering in the fall of 2012 to treat the life-threatening bone marrow disorder myelodysplastic syndrome (MDS).

For the hundreds of adults who undergo stem cell or bone marrow transplants each year at MSK, mostly for blood cancers, Ms. Roberts’ book relates a familiar experience. Beyond the physical difficulties of the treatment itself, this type of transplantation requires prolonged isolation from everyday life, adding emotional challenges to an already steep recovery.

“With any diagnosis that threatens your life, even for patients with the greatest amount of support, there may be a sense of aloneness at different points in the illness and treatment experience,” says MSK social worker Margery Davis, who works with patients on the Adult Bone Marrow Transplant Service. “For transplant patients, there’s also a physical isolation and restrictive lifestyle imposed by the treatment that’s very different from other experiences.”

Creating Comfort during the Hospital Stay

During hospitalization, which frequently ranges from two to six weeks, it’s paramount to keep bacteria, viruses, and fungi from infecting BMT patients — particularly for those receiving a donor-derived, or allogeneic, transplant, whose immune systems are being entirely rebuilt as these “foreign” cells engraft in their bone marrow. That’s why all visitors, along with medical staff, bear the rectangular visage of masks and don gloves, as Ms. Roberts poignantly describes. It’s only after patients’ blood counts begin to rise again that they’re even allowed out of their hospital room to walk the halls.

This isolation doesn’t have to equal solitary confinement, since a small circle of family and friends can spend time with BMT patients both in the hospital and at home in the first months after discharge. Instead, the separation stems from being deprived of normal sights, sounds, smells, tastes, and touches along with regular patterns of socializing, working, shopping, and moving about.

“People generally feel well taken care of here, so I wouldn’t say the isolation is only because of the environment and the masks and gloves,” Ms. Davis says. “I think the room isolation contributes to feeling disconnected at times. It’s hard to cope being in a room that represents their illness and treatment 24-7.”

To compensate, some patients outfit their space for the long haul with homey touches such as comforters, photographs, and simple wall hangings, says Ann Jakubowski, a physician on MSK’s Adult Bone Marrow Transplantation Outpatient Unit. They can also shun hospital gowns and wear their own leisure clothes during much of their stay.

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Making Adjustments at Home

Psychologically, a far more vulnerable time for most BMT patients is the 100 or so days after they leave the hospital, according to Dr. Jakubowski and Ms. Davis. At home, a multitude of adjustments await, all to minimize germs: Dirt and dust are enemies. Many foods are discouraged. No taking mass transit, no eating out, no venturing into crowds. Visitors must be limited and screened to make sure they’re not sick. Even the family pet — because it may carry bacteria or other infectious organisms — might have to temporarily live elsewhere.

“For some people, their dog is like their baby, especially for those who don’t have kids,” Dr. Jakubowski says. “It’s really hard on them. There are a lot of rules and recommendations they are given while their immune system is suppressed…all trying to protect them.”

Unless they’re able to work from home, many patients must also leave their jobs for at least three months, which can add to the mounting financial strain of treatment. Some people also experience the long separation from work as a blow to their identity. Creating structure around these home-based months — when patients are encouraged to limit outside activities to only frequent follow-up medical visits — is key. Quiet routines that include bathing, exercise, reading, and light household chores such as folding laundry can help focus patients during seemingly endless days.

“I think the slow recovery is very hard for people to sit with,” Ms. Davis says. “People need to get back to work for financial reasons, but also for purpose and meaning in their life. They need to create a structure for themselves without being able to work.”

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Strategies for Recovery

To smooth recovery psychologically and physically during isolation, Dr. Jakubowski and Ms. Davis offer the following advice. These tips may be helpful not only to patients who have undergone BMTs but also to those whose immune systems may be compromised due to chemotherapy or other cancer treatments.

Keep active.

Yes, your energy is limited, and you can’t hit the gym. But while you’re hospitalized, get out of bed at least twice a day, if possible, and do the exercises hospital staff members recommend, which reduce the risk of infection and help maintain muscle tone. At home, short treks outside (away from crowds) help build endurance, and wisely selected video fitness games such as tennis, basketball, or bowling offer a surprisingly effective workout. “It’s about keeping a positive perspective and moving forward as opposed to being in a sick mode,” Dr. Jakubowski says.

Stay connected.

Virtual connections — through email, Skype, and social media outlets such as Facebook — can fill the void while face-to-face contact is scarce. MSK offers the online community Connections for patients and caregivers to give and receive support. Just be careful about chat rooms and websites operating without oversight from a major health organization, Dr. Jakubowski says, since information may be misleading or wrong.

“With the Internet, it’s easier to keep some connection with other people,” she says. “You can see and hear them in ways that wouldn’t have been possible ten or 15 years ago. And in terms of being able to talk to your kids while you’re in the hospital, or talk to your friends, being able to use Skype is huge.”

Our Patient-to-Patient Support Program  can also put you in touch with a cancer survivor or caregiver who has been through the experiences of treatment and is willing to listen to any concerns or anxieties you may have. These conversations may take place over the phone or via email.

Take a taste.

The chemotherapy and radiation typical before stem cell transplantation, as well as some of the medications needed to protect the transplant patient, temporarily affect many patients’ sense of smell and taste, lowering appetite and causing varying degrees of weight loss. Despite your aversion, “keep trying tastes of everything — salty, sweet, and different textures — to see what works right now,” Dr. Jakubowski suggests.

Focus on the end game.

Set small, short-term goals such as attending a social event (with your doctor’s blessing) so you have something to look forward to. “It’s a relief to go even to the grocery store,” Ms. Davis says. “It’s a sign you’re moving toward recovery, toward normal life.”

But don’t do too much, too soon, even if you’re feeling stronger, Dr. Jakubowski warns. “Some patients live by the rules…and others feel very cheated that things aren’t normal. It’s maybe a year of your life, but if it’s what it takes to save your life, try to hang in there.”

Set expectations.

Appoint a “spokesperson” who can keep others in the loop about your transplant and recovery. This person can also help set expectations for your at-home healing period. “Patients say that everyone expects them to do everything they did before, but just because you’re home doesn’t mean you’re back to normal,” Ms. Davis says. “It’s a very high-risk phase, and I think a sense of isolation comes when people have a different schedule for you to get back to normal than the real schedule.”

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Just read this and it's a great resource! I had a ASCT in 2005 so am very familiar with the things discussed. You might want to consider adding another resource....the Patient 2 Patient Volunteer program at MSK. Patients in treatment can be connected to someone who has been through the same/similar experience themselves. Robin

Robin, great suggestion! We've added that to the story. Thank you so much for your comment.

How do we do this with a 6yr old Autisic boy who loves being outside and playing with his cat. How to you explain it so he understands for a 100 days he is to be isolated? Any suggestions would be helpful.

Dear Michelle, we reached out to social worker Margery Davis, and she offers this advice:

"Dear Michelle,
Thank you for your great question. It's such an important one as it highlights that every person's situation is unique and that it is so important to think ahead about what each individual's needs are. In the case of your son, just like you are asking here, I would suggest you tap into the expertise of your son's oncologist and the support team working with your son's medical team.

Here at MSK we have child life therapists, a child psychologist, and a social worker who help parents develop a plan that will help both you and your son manage the isolation. The support team is with you and your family throughout the entire transplant course. The importance of structure, preparation and attention to how transitions are handled are areas that a support team could help you address. If you already have a support team at home (teachers, therapists) you can include them in this discussion as well, since they know your son well too. Most importantly, continue to ask for help from your son's medical care team because they are there to help all families through this very stressful medical treatment and hospital stay."

We hope this is helpful, and thanks so much for reaching out.

I have many health issues. I have waldenstrom lymphoma and amyloidosis. Due to high protein from amyloidosis and or my so far 3 years of different chemos, i also have bad kidneys. My concern is the high doses of chemo to prepare for transplantation, how will my kidneys hold up and would this even be a option for me anymore.

Taneka, we recommend you discuss these concerns with your healthcare team. If you'd like to make an appointment to meet with a doctor at MSK, you can call 800-525-2225 or go to http://www.mskcc.org/cancer-care/appointment for more information. Thank you for your comment.

My mom was diagnosed with Multiple Myeloma; she had her stem cell transplant two weeks ago. She was let go from the hospital yesterday, and now she stays in isolated room. However, I have to bring her meals and beverages all the time, and I don't wear mask when I go in her room, should i wear mask and gloves, every time I walk in her room? Also, she feels lonely and anxious to walk around the house. My question is, does she have to be in complete isolation in one room and if yes for how long?

Thank you

Dear Aleksandra, we are sorry to hear about your mother's diagnosis. It's important to follow the rules of a home isolation room, which may include wearing items to help reduce her risk of infection such as a mask and gloves. Her doctor or nurse would be good sources of information and we would encourage you to check with them. They can also tell you how long your mother needs to remain in isolation - 100 days is typical, but again, every patient is unique and only her doctor can make that determination.

We recognize that it can be difficult for people in isolation to cope with feeling disconnected at times. It's a slow recovery process, but this article does offer some good tips that may help, like staying in touch with family and friends on the internet. She (and you) may be interested in joining Connections, our online community for patients and caregivers, where people share experiences and support. To learn more, visit http://www.mskcc.org/cancer-care/counseling-support/connections-online-….

Our Patient-to-Patient Support Program can also put her in touch with a cancer survivor or caregiver who has been through the experiences of treatment and is willing to listen to any concerns or anxieties she may have. These conversations may take place over the phone or via e-mail.

We hope these suggestions are helpful and wish your mother our best as she continues with her recovery.

My husband was just released from the hospital last night after a stem cell transplant. I am feeling extremely overwhelmed now that he is home because I have to do my part in this. He bravely and without complaint went through this process. Now its up to me to keep him healthy by cooking special foods, keeping him safe from bacterias. I need suggestions for a caregiver please.

Lorraine, thank you for reaching out. If your husband is on a low microbial diet (which is often recommended for people whose immune system is weak such as after a transplant) you can find more information at:


You can also see resources for caregivers, at

http://www.mskcc.org/cancer-care/counseling-support/caregivers-families and our online support group


Above all, we also strongly encourage you to speak with the nutritionist on your husband’s care team for more information.

Very informative article. My mother is currently about to receive chemotherapy at Sloan for AML. The hope is that the treatment leads to remission, then a bone marrow transplant from her brother, and ultimately a cure. We live in Maryland, but opted to come to Sloan after John Hopkins didn't work out. I am hopeful that this treatment will work and she can move to the transplant phase, but I am not sure how to balance the need to stay close to Sloan and the role of the caregiver. As I mentioned, I live and work in Maryland so proximity is an issue. Additionally I am an only child and she is not married, so I am the sole person who can serve in the caregiving role. How do people not from NY handle the first few month post-transplant, when one would need to be in close proximity to the hospital? I cannot just tak 3+ months off work to be a caregiver AND pay for a place to stay in NY--financially it is not feasible. These are concerns that we are going to relay to the Sloan BMT team in hopes that there is something out there that can be of assistance. The chemo and BMT process are already difficult, but then the way the care is structured after the BMT (e.g., care giving and the need to stay close to the hospital), makes it very difficult or impossible, even if one is a prime candidate. At least that what it is in our case.

Dear Jabja, we are sorry to hear about your mother's diagnosis and wish her well as she prepares for her upcoming treatment. As her caregiver, you will also need support as you do what you can to help your mother throughout this experience. You may be interested in looking into our resources for caregivers, which includes several blog posts, videos, and an online support group that meets twice a month (the next meeting will be held on April 9, 2015): http://www.mskcc.org/cancer-care/counseling-support/caregivers-families

In addition, you may want to look into Hope Lodge (a service of the American Cancer Society), which offers cancer patients and their caregivers a free place to stay when treatment is far from home. Learn more about their facility in Manhattan: http://www.cancer.org/treatment/supportprogramsservices/hopelodge/newyo…

Memorial Sloan Kettering has also negotiated special rates and amenities for patients, families, and caregivers at select facilities for long-term stay in Manhattan. Learn more about those here: http://www.mskcc.org/cancer-care/hospital-information/accommodations

We hope this information is helpful. Thank you for reaching out to us.

My husband just had his one year post transplant checkup. He was diagnosed June 2014 with B cell ALL ph+. He did extremely well. He's been in remission for an entire year now. Our son took a leave from work for 3 months to help care for his father and help me so I could continue to work. My youngest was in college on baseball scholarship but his coach excused him from practice when he needed to be there for his family. I could not have taken care of my husband without my sons. Unfortunately my son lost his job as a result of helping with the caregiving but he says he would never change what he did for any job. His boss just didn't understand and my son is employed now and has no regrets. My post is simple, helping your family , even if it seems impossible, is the right thing to do. Make it happen. Your family member deserves it.

Dear Amy, we are glad to know that your husband is doing well and that you and your family were there to help and support him throughout his treatment. We wish you all a happy, healthy new year! Thank you for sharing your story.

I enjoyed article . I have had two allogenic bone marrow transplants last was August 13 2015 . Both of my transplants were performed at the Huntsman Cancer Hospital in Salt Lake City Utah . Great people and facility . I found that one of the most important things is to have a positive attitude and smile , it is hard I went through total body irradiation on last transplant and it knocked me to my knees so as long as I was there I prayed and meditated . Ensure you take meds , stay away from sick people , wash your hands often and stay positive through the nausea , pain , loss of appetite honestly it gets better keep smiling

Dear Joey, we are sorry to hear about everything you've been through. Thank you for sharing your experience and positive outlook!

If you are interested in engaging with other patients who have had a similar diagnosis and treatment experience, we would encourage you to join our online community for patients and caregivers, called "Connections." There, you can ask questions, find support and encouragement, share your perspective, and learn how others have coped. To learn more about our community and how to sign up, please visit www.mskcc.org/connections. Wishing you all our best.

I live in Colorado. My brother, New Yorker, will be undergoing a bone marrow transplant at MSK in the next month or two. The only other person who could take care of him besides me is his son. He works, while I am retired. Does y brother need someone to be close by for the months after he goes home from the hospital? If so, I would move to NY for several months, or come out periodically. Please let me know.

Dear Diane, we encourage your brother to ask his transplant team how much help they anticipate he will need from a caregiver when he goes home after the transplant. They will work with him before he goes home to make plans for his follow-up care. We also have some general patient education information on our website that may be useful to prepare for this transition:

Returning Home After Your Autologous Stem Cell Transplant: https://www.mskcc.org/cancer-care/patient-education/returning-home-afte…

Returning Home After Your Allogeneic Transplant: https://www.mskcc.org/cancer-care/patient-education/returning-home-afte…

We hope this information is helpful. Thank you for reaching out to us.

Got home 1week ago today from hosp for stem cell transplant and chemo. I am still having fevers, is this common? I also had a clot in my lung and was given a filter.

Dear Roberta, every patient is unique and responds to treatment differently. It's best if you follow up with your physician with specific questions about any side effects, complications, or symptoms you are having post-transplant. We wish you our best for a successful recovery. Thank you for reaching out to us.

I've had my lymphoma diagnosis since October '13. I've been through the standard R-chop treatment, however, no such luck.
Now, I'm in a 6 cycle targeted chemotherapy program which will end with a stem cell transplant. The the unknown period of isolation will come around October '14.
I am grateful for the technology, however, terrified of the isolation and home recovery.
My pets are my children. Being isolated in the hospital will not be a concern, but once home, will my wearing a mask all of the time allow me to be with my pets in the normal way?
Am I just being sillly?

Hi Robb, we recommend you discuss your concerns with your transplant team. They'll be able to give you the guidance you need for recovery from your transplant, including care of your pets. Best wishes to you.

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