Kaye's Questions and Answers about Stem Cell Transplants

Kaye, a native of Australia, was diagnosed with Hodgkins Lymphoma (mixed cellularity) in 1995. She began a course of conventional chemotherapy, but this proved to be unsuccessful. In 1996 she underwent high-dose chemotherapy and a stem cell transplant. This is a record of her experiences.

Why did you have the treatment?

I was diagnosed with Hodgkin's Disease 1B, with a medistinal tumor that measured around 20 cm. My gallium scan had shown extensive bone marrow involvement, but my bone marrow biopsy was clear.

I underwent 5 combined treatments of conventional chemotherapy (CHLVPP/ABV), when my cancer again became active and it again appeared as if there was bone marrow involvement, although the biopsy did not confirm it.

My specialist felt that with such an early relapse, before I had even completed my treatment, warranted radical restaging and more aggressive treatment.

In other words, they wanted to shoot the big guns at it!

The statistics were: without a high-dose 13% chance of survival. With the high-dose 50% chance of long-time survival.

What happens before the transplant?

In my case, I had what is medically termed salvage chemotherapy. This is done to try to get you into remission. It is also done to stimulate the production of large amounts of stem cells. The salvage chemotherapy is a reasonably large dose that takes place in the hospital setting over a period of 4 days, and for a couple of months prior to your high-dose and transplant.

My salvage chemotherapy consisted of large doses of Cisplatin and Cytarabine or Ara-c as the doctors referred to it. Together, they are a powerful combination and by the second dose my gallium scan showed I was almost clear. Along with these drugs, I was given Dexamethasone, which is a type of steroid.

These drugs made me very sick, even with the Ondansetron (Zofran), and I could not hold my food down. I was also constantly going to the to the toilet because they gave a lot of hydration through an IV prior to the Cisplatin. This is to protect the kidneys.

Immediately after I finished each salvage chemotherapy, I started injecting myself with G-CSF (Neupogen) which stimulates the production of white blood cells.

At a certain point, in my case 8 days after I finished the salvage chemotherapy, my stem cells were collected. This was done as an in-patient in my case, because I had become neutropenic 5 days after the salvage chemotherapy and had to go into isolation for a couple of days.

As well, the hospital ran extensive blood tests. They checked for any prior exposure to the Chicken Pox Virus, the Epstein Barr Virus and HIV. I was told this was standard, because the high-dose would destroy all my bone marrow and I would have no immunity. I tested positive for the Chicken Pox Virus and Epstein Barr, so they told me they would administer me with Gancylovir which is a prophylaxis (preventative) drug.

The Chicken Pox virus stays in the system, and can be potentially fatal under conditions of a suppressed immune system.

My specialist was fairly open with me about the dangers of having my bone marrow destroyed. He told me that there was a chance I could die, but he also told me that he thought I would do well because I was physically very strong. This made me nervous, but reasonably confident I would make it through.

I was also advised to have a dental examination and have all decays seen to.

What is it like having your stem cells collected?

Well, this was something different! I had a vascular catheter inserted into a large vein in my upper chest. This catheter had 2 lumens (openings). These lumens were hooked up to a machine called an apheresis unit. When the machine was turned on, my blood went in one tube that took it through the centrifugal process of the apheresis machine, the stem cells were collected and my blood was returned via the other tube!

Sounds a bit scary, but other than feeling fatigued, there wasn't much to it! I must admit, I couldn't stand to look at my blood going through the tubes.

One collection took 4 hours. I was lucky, they were able to harvest enough stem cells in that one collection. For others in my unit, they took 3 or 4 collections. It all depends on your system and the good timing of your medical team. (Ed. note: it took me 5 collections!)

What is the high-dose chemotherapy like?

Two weeks before the high-dose was scheduled, I had a Hickman Catheter inserted into a large vein in my neck. This was done under general anesthetic. In most cases it is put into the chest, but they couldn't find a vein big enough in mine! The catheter was essential for receiving my high-dose, blood products and, if I had needed it, nutrition.

7 days prior to the transplant, I was given what is called conditioning chemotherapy which is the high dose of chemotherapy. This is the dose that destroys all the bone marrow, and hopefully all the cancer cells.

This was administered in a hospital setting, in a room by myself. The protocol of drugs consisted of Etoposide, Cytarabin (Ara-c) and Melphalan. It took 5 days, and I felt no sicker than I had during the salvage chemotherapy. The medical staff mad sure that I was administered Ondansetron (Zofran) through my Hickman catheter every 8 hours. This certainly helped enormously with the nausea. I felt pretty awful, but within the bounds of bearable.

During this period I became anemic so they gave me a blood transfusion.

After 5 days, I was allowed to go home for 2 days, which was not terrible successful because I had severe nausea and had to come back in to hospital to go back on to Ondansetron.

I had completed my high-dose on the Friday. On the Monday I was scheduled to have my stem-cells transplanted.

What is the transplant like?

Smelly! Really stinks!

I am not joking. The solution that the stem-cells are kept in smells like bad fish. The nurses warned me that I would smell bad for 3 days and I did! (Ed: your results may vary depending on the transplant center).

A doctor performed the procedure. It was very simple and done through my Hickman Catheter. The stem cells arrived from the dungeons of the hospital in a foam eskie (cooler to us up north)!

I have to say here, that I was worried that they might be lost or dropped on the way. I mean you are sitting there waiting, knowing that your life depends upon getting your stem cells - what happens if they don't turn up? Anyway, I don't think it has ever happened, but funny things run through your head when you are in these life-threatening situations.

The stem cells are in bags like platelets, and they were injected through my Hickman Catheter. I was given Phenergen prior to the injection to prevent any allergic reaction, which can happen even though they were my own stem cells. The transplant took about an hour. I vomited a few times, because the smell was so fowl and I could taste it in my throat. I was relieved when it was done!

Is it painful?

The transplant itself is not painful. What I found the most difficult was my body's reaction to the high-dose of chemotherapy.

It is true that I experienced pain during the transplant, but it was not the overwhelming sort of pain I had feared.

I had a very sore throat due to mucosis - the lining of my throat had been destroyed by the high-dose of chemotherapy. I couldn't swallow at one stage because I had so many ulcers in my throat and on my tongue.

I was put on a morphine drip for a period, but I could not tolerate the drug and became extremely nauseated so I asked them to take me off morphine. I then used a soluble form of paracetemol, which helped relieve the pain a little. I sucked ice, which helped. I drank liquids through a straw, well sipped really!

Throughout this period, I would wash my mouth with a bi-carbonate solution and I also used Nilstat which helps prevent thrush.

I also experience ulcers in my gut, which were uncomfortable but at no time was a rolling in agony. In other words, the pain was within the boundaries of bearable.

Most uncomfortable was the diarrhea. The lining of my bowel was destroyed and for a period of about a week, I could not control myself fully. That was embarrassing more than painful. I did have a problem with hemorrhoids and I used some medicated cream to assist. Some patients suggest taking your own, very soft, toilet paper with you. Hospital provisions are usually a little on the rough side! Some sort of pads or a packet of Depends may also prove extremely useful.

As my blood counts began to go drop and finally hit rock bottom, my mouth and throat became progressively worse. I had a nil white cell count for about 3 days and then it very slowly went up. As my white cells came up, I began to improve and felt much better within 7-8 days.

I did have a couple of platelet transfusions, but no more blood transfusions.

When my white cell count was at its lowest, I developed an infection, which caused me to pass out, but the medical staff were able to treat it with antibiotics.

How long were you in the hospital?

I began my high-dose on January 8 1996. I was released from hospital on January 31st. 21 days in all.

What was it like being in isolation?

The nurses warned my about what they called "4 wall syndrome". In fact, it was one of the things I was most worried about.

I found the first 5 days, when I was having the chemotherapy, the worst. I am sure it was because of the steroids. I was receiving them as part of the high-dose and they make me feel anxious.

After that, when my bone marrow began to disappear, I began to feel very tired and I didn't have the energy to do much. Then I didn't find it so hard to stick in a hospital bed.

On the day I was unhooked from all my lines and told I could go out in the corridor for a walk, I was quite tentative to go - funny, after all that time being stuck in one room. I think it is a bit like a budgie when you leave the door of their cage open, they take some time before they fly away.

How did you cope being and what did you take in with you?

I tried to develop a schedule or routine. I would have breakfast at about 7-7.30. Even when I couldn't eat, I would have a cup of liquid and sip it, just something to make me feel like I was having breakfast. I needed to feel I was organizing my day.

Then I would have my shower and do my face! I had no hair, so I would chose a scarf and I would put on fresh clothes. It was summer time, and I had some cool, loose dresses that were sort of like nighties.

I had a TV and video in the room, as well as a tape and CD player. In the mornings I would listen to the news, watch a current affairs show or something that kept me in touch with the outside world.

To keep myself busy, my dear brother came to the rescue. He brought me in a knitting pattern, wool and needles and off to work I went. During that whole time, 21 days, I knitted my little girl a jumper! It was a first, and psychologically it was very, very important for me. It kept my mind occupied, as well as doing something for my little girl.

In the afternoons I slept. Then I had dinner. Then I watched the news, a video and went to sleep. I would wake up a lot through the night, but I couldn't solve that problem. I couldn't swallow sleeping tablets because my throat was too sore.

I also had a whole array of other things to do. I took drawing pencils, an drawing book, reading material, lots of tapes and compact discs which I played all the time. I took a pack of cards. My husband bought me a calligraphy pen and book, and I taught myself some different styles. I took everything I could get my hands on, because I wanted to cater for all my moods.

Can you have visitors?

When my white cell count fell below 1, I was only allowed to have a few visitors, and they had to wash their hands before they entered. My husband was with me most of the time, and if we had wanted, he could have stayed over night. That proved not to be necessary, but was good to know.

What about children, how do they cope with the separation?

My medical staff advised me not to come in to contact with young children during the period of my transplant and until my white cell count reached a normal level. That is because young children have poor hygiene and carry a lot of germs.

My little girl was 22 months old at the time. My husband and I organized for her to stay with family for 3 weeks. I had a phone in my room, and they would ring me each day so I could talk to her.

I missed her terribly, and at times I felt very guilty. But I was doing it because I wanted to live, and be there for her for many years to come. So I kept this in mind, and made up for lost time when I got out of hospital.

How do you manage when you come home, do you need home care?

I had a cleaner come in to do the house work weekly. I cooked. My husband took our daughter to day care and picked her up afterward and then we bathed her etc. together.

I could do quite a bit, but I became fatigued very easily. I was impatient to get back to a normal but I had to wait longer than I thought. I developed a severed lung infection about 8 weeks after I left hospital - pneumonitis. It took me 3 weeks to recover.

One of the most annoying side effects of the treatment, was joint and muscle pain. It lasted for about 3 months, and was at times quite debilitating. I believe it was to do with the high-dose of steroids.

I was quite sensitive emotionally during this whole period. I think it was because I had steeled myself to get through the transplant and could not afford to let my feelings get the better of me. After the transplant was over, I had a rush of very mixed feelings, that took some time to manage.

Going back to work was difficult, and I was very worried that I would be adversely affected by the level of stress involved, but I took it slowly and I have coped.

How long before you feel yourself again?

For me, it took about six months. I still have not regained my full strength and become fatigued, but I live a busy lifestyle.

I have a tendency to develop chest infections. I also have a severe hearing problem - tinnitus. This was caused by one of the agents used in my salvage chemotherapy, Cisplatin.

How to prepare and cope with the fear of relapse?

This is difficult and about 8 months post transplant, I sought professional advice from a counselor who was experienced with cancer patients in remission.

I think the more check-ups I get through, the stronger I feel emotionally, but it is never easy in the lead up to a check-up.

I have read some books written on the subject of survivorship, and found it helpful. I sought out information on the Internet that proved decisive in clarifying many questions I had and as a consequence I regained some of my lost confidence. I also subscribe to a Hodgkin's Disease e-mail support group that helps enormously.

Infertility:

I was 38 when I was diagnosed. The first line of chemotherapy that I was given, CHLVPP/ABV brought on an early menopause. I take hormone replacement therapy. I think the high-dose would have made me infertile, if the first line of chemotherapy had not. But it is something that would have to be discussed with a doctor.

Ed. Note: Our thanks to Kaye for opening the door to the personal side of transplantation!! Of course all people's experiences will be different - you should talk with your doctor and proposed transplant center for their treatment plans.

 

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Please see these related pages:

The Adult Bone Marrow and Stem Cell Transplant Page

The Childhood Bone Marrow and Stem Cell Transplant Page

The Lymphoma Information Network