An autologous stem cell transplant is such an intense and stress-inducing experience for myeloma patients, and I’m worried that it may have the potential to cause prolonged psychological distress. I know that attitude and positivity can often play a big role in a patient’s recovery from physical interventions. I remember reading on a separate thread that a patient did not fare well after entering a psychological downward spiral when complications arose from a stem cell transplant.
Our doctors prepare us for the physical effects of a transplant. We prepare our homes and our environment for our return after a stem cell transplant.
What about our minds? Is it typical to receive psychological counselling prior to an autologous stem cell transplant?
My doctors haven’t recommended or referred me for any such counselling, but I’m thinking it may be useful to be armed with some psychological coping mechanisms prior to my stem cell transplant.
Forums
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Psychological counseling prior to stem cell transplant?
Hi Karen,
I am awaiting an auto stem cell transplant. I was originally scheduled Feb 1, but then developed a cough, which pushed it out a month, and then developed tooth problems (needed an extraction and 3 root canals), which pushed it out 3 weeks. My new date is March 16.
All of this up and down roller coaster has taken a toll mentally. That, combined with the fact that since mid January I have somewhat isolated myself so that I wouldn't catch anything prior to transplant. It has been flu season here. This means that I can't babysit my toddler grandchildren, go to the gym, etc. etc. I miss everyone very much! Fortunately, my husband is a great companion and we love our house!
Anyway, I am part of a study trial that proposes to give transplant patients an anti-anxiety medication 1 week prior to transplant and continuing for 30 days post transplant. To see if there is a deeper response. I would assume that stress and anxiety play a role in recovery. I know that continued exercise throughout the process is extremely important (I would think not only physically, but psychologically). Since the body produces endorphins during exercise that give us that 'feel good' feeling. Also, I am doing my transplant outpatient. This is another way to feel less like a 'patient' mentally and more like I am still a part of the outside world. I think the isolation is a very big contributor to depression and anxiety.
I am awaiting an auto stem cell transplant. I was originally scheduled Feb 1, but then developed a cough, which pushed it out a month, and then developed tooth problems (needed an extraction and 3 root canals), which pushed it out 3 weeks. My new date is March 16.
All of this up and down roller coaster has taken a toll mentally. That, combined with the fact that since mid January I have somewhat isolated myself so that I wouldn't catch anything prior to transplant. It has been flu season here. This means that I can't babysit my toddler grandchildren, go to the gym, etc. etc. I miss everyone very much! Fortunately, my husband is a great companion and we love our house!
Anyway, I am part of a study trial that proposes to give transplant patients an anti-anxiety medication 1 week prior to transplant and continuing for 30 days post transplant. To see if there is a deeper response. I would assume that stress and anxiety play a role in recovery. I know that continued exercise throughout the process is extremely important (I would think not only physically, but psychologically). Since the body produces endorphins during exercise that give us that 'feel good' feeling. Also, I am doing my transplant outpatient. This is another way to feel less like a 'patient' mentally and more like I am still a part of the outside world. I think the isolation is a very big contributor to depression and anxiety.
Re: Psychological counseling prior to stem cell transplant?
If I recall correctly, the stem cell transplant pre-testing included a check on psychological status.
Best of luck with your upcoming transplants.
Best of luck with your upcoming transplants.
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philatour - Who do you know with myeloma?: spouse
Re: Psychological counseling prior to stem cell transplant?
Hi Karen and Debbie,
There is probably a department at the cancer centre which may help with psychological stresses, and also at our cancer centre there is a multi-denominational chapel. A pastor does offer support if you would like to have that. There are also myeloma support groups, which you could get in touch with.
I was an 'outpatient' for most of the stem cell transplant process, and thus was at home a lot. It helped me to get phone calls, and when I felt better, to go for walks outdoors with a friend or family member. Just getting out in the fresh air was helpful to me. Being quite busy also with being driven back and forth to the outpatient clinic (we live about 20 minutes from the hospital), kept my mind occupied. I was also reading a good book (about schools for girls in Afghanistan as I recall), and listening to music as usual.
When I was having the aphaeresis for stem cell harvest, which was a long day, there was a study running to see if having a poster of flowers on the ceiling helped with the stem cell collections. I think that was psychological research actually.
Even though the stem cell transplant was difficult, the time went by day by day and soon I was feeling a lot better than before. Good luck with your stem cell transplants!
There is probably a department at the cancer centre which may help with psychological stresses, and also at our cancer centre there is a multi-denominational chapel. A pastor does offer support if you would like to have that. There are also myeloma support groups, which you could get in touch with.
I was an 'outpatient' for most of the stem cell transplant process, and thus was at home a lot. It helped me to get phone calls, and when I felt better, to go for walks outdoors with a friend or family member. Just getting out in the fresh air was helpful to me. Being quite busy also with being driven back and forth to the outpatient clinic (we live about 20 minutes from the hospital), kept my mind occupied. I was also reading a good book (about schools for girls in Afghanistan as I recall), and listening to music as usual.
When I was having the aphaeresis for stem cell harvest, which was a long day, there was a study running to see if having a poster of flowers on the ceiling helped with the stem cell collections. I think that was psychological research actually.
Even though the stem cell transplant was difficult, the time went by day by day and soon I was feeling a lot better than before. Good luck with your stem cell transplants!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Psychological counseling prior to stem cell transplant?
Hi KarenaD,
When EJ went through his stem cell transplant, we had to see a psychologist / counselor as part of the numerous tests and exams they put him through. At the time, we were told that the psychological exam was a bit of a holdover from earlier times, when the survival rate of stem cell transplants was considerably lower. To maintain their certifications for transplants, hospitals still require them. This is just a one-time-only meeting, however, nothing long term.
Lyn
When EJ went through his stem cell transplant, we had to see a psychologist / counselor as part of the numerous tests and exams they put him through. At the time, we were told that the psychological exam was a bit of a holdover from earlier times, when the survival rate of stem cell transplants was considerably lower. To maintain their certifications for transplants, hospitals still require them. This is just a one-time-only meeting, however, nothing long term.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Psychological counseling prior to stem cell transplant?
Karena,
Both the hospital which you got your CyBorD at in K-town and the hospital where your stem cell transplant (Hammertown) is going to be have social workers and other psychological professionals on staff in the actual cancer centres. This is covered by OHIP.
Both the hospital which you got your CyBorD at in K-town and the hospital where your stem cell transplant (Hammertown) is going to be have social workers and other psychological professionals on staff in the actual cancer centres. This is covered by OHIP.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Psychological counseling prior to stem cell transplant?
There were no psychological testing or services prior to my stem cell transplant, but if I had requested services, they were available. The year that I was diagnosed with smoldering myeloma, I started attending a meditation group at the local Cancer Support Community. Through that I was selected to join a class of people with cancer for a Mindful Meditation class at my cancer center. It gave me the tools that helped me, and continue to help me, manage stressful situations better.
When I was in the hospital for my transplant I used my meditation to keep me calm. In fact, one day one of the nurses asked me if I wondered why so many of the staff would drop by my room even when there was nothing that needed to be done or checked on. She told me that it was because my room was such a peaceful oasis that they came just to take a moment of respite for themselves.
In addition to the daily meditation, I had many visitors and phone calls. I had books to read and DVD's to watch to occupy my time. I walked in the halls frequently. And, since we had 2 blizzards while I was in the hospital, I found a bench by a window that looked out over the university campus and watched the snow falling, the students playing in the snow, and the dogs enjoying jumping over the snow. Even though I couldn't go off the transplant unit, watching the snow outside made me happy. I also looked at the time in the hospital as a vacation from having any responsibilities. I didn't have to work, cook, clean, etc. All I had to do was get better.
All of the above things helped me manage the process of the transplant with few difficulties. When my numbers had risen to the point where I could be discharged, I was more than anxious to go home. But, until that day, I was fine where I was.
If you feel that psychological counseling would help you with the transplant, definitely ask for it. Do whatever you feel would be beneficial to you and to your response to the treatment.
Nancy in Phila
When I was in the hospital for my transplant I used my meditation to keep me calm. In fact, one day one of the nurses asked me if I wondered why so many of the staff would drop by my room even when there was nothing that needed to be done or checked on. She told me that it was because my room was such a peaceful oasis that they came just to take a moment of respite for themselves.
In addition to the daily meditation, I had many visitors and phone calls. I had books to read and DVD's to watch to occupy my time. I walked in the halls frequently. And, since we had 2 blizzards while I was in the hospital, I found a bench by a window that looked out over the university campus and watched the snow falling, the students playing in the snow, and the dogs enjoying jumping over the snow. Even though I couldn't go off the transplant unit, watching the snow outside made me happy. I also looked at the time in the hospital as a vacation from having any responsibilities. I didn't have to work, cook, clean, etc. All I had to do was get better.
All of the above things helped me manage the process of the transplant with few difficulties. When my numbers had risen to the point where I could be discharged, I was more than anxious to go home. But, until that day, I was fine where I was.
If you feel that psychological counseling would help you with the transplant, definitely ask for it. Do whatever you feel would be beneficial to you and to your response to the treatment.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Psychological counseling prior to stem cell transplant?
Thanks everyone for your helpful responses and suggestions.
I had my big “planning meeting” with my transplant team yesterday, and was advised that it is not my transplant center’s practice to provide psychological testing or counselling prior to an autologous stem cell transplant (ASCT). They did, however, confirm that psychological services are available before my ASCT, during my stay in hospital, and afterwards – upon request. So, at my center at least, the onus is on each patient to determine themselves if they need psychological services.
I will make sure to take lots of cheery entertainment (DVDs, computer, books, music etc.) with me to the hospital, and will also make sure that I get exercise each day. My doctors did say that exercise is key and that it is never a good idea (from either a mental or physical standpoint) to lie in bed for prolonged periods of time. So I’ll be making my rounds of the hospital each day and, when I get home from my hospital stay, I will try to get outside for daily forest walks with my dog. Nature and exercise are always a good combination for the psyche.
I’ve also found meditation tapes helpful in the past during times of heightened stress, and will also revive that practice in preparation for my ASCT.
I had my big “planning meeting” with my transplant team yesterday, and was advised that it is not my transplant center’s practice to provide psychological testing or counselling prior to an autologous stem cell transplant (ASCT). They did, however, confirm that psychological services are available before my ASCT, during my stay in hospital, and afterwards – upon request. So, at my center at least, the onus is on each patient to determine themselves if they need psychological services.
I will make sure to take lots of cheery entertainment (DVDs, computer, books, music etc.) with me to the hospital, and will also make sure that I get exercise each day. My doctors did say that exercise is key and that it is never a good idea (from either a mental or physical standpoint) to lie in bed for prolonged periods of time. So I’ll be making my rounds of the hospital each day and, when I get home from my hospital stay, I will try to get outside for daily forest walks with my dog. Nature and exercise are always a good combination for the psyche.
I’ve also found meditation tapes helpful in the past during times of heightened stress, and will also revive that practice in preparation for my ASCT.
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Psychological counseling prior to stem cell transplant?
Hi Karena,
I recently had an auto stem cell transplant in January this year. Part of the prep included a couple of meetings with the hospital psychologist, which were optional. I found these to be extremely beneficial as, like you, it was a relatively short time between diagnosis and transplant.
What I hadn't realised was between the whirlwind of the tests and meetings and treatments I hadn't actually had a lot of time to discuss how the whole thing made me feel.
Getting this off my chest definitely helped me approach the transplant with a clearer head.
I can definitely say that the hardest part for me psychologicaly was the return to home and not having the energy to be involved with what was going on around me. Nothing could have prepared me for that.
I can say that the meetings with the psychologist helped a lot, as did the meditation, but it looks like you have that in your bag of tricks already
I wish you the best of luck with your transplant,
Stu
I recently had an auto stem cell transplant in January this year. Part of the prep included a couple of meetings with the hospital psychologist, which were optional. I found these to be extremely beneficial as, like you, it was a relatively short time between diagnosis and transplant.
What I hadn't realised was between the whirlwind of the tests and meetings and treatments I hadn't actually had a lot of time to discuss how the whole thing made me feel.
Getting this off my chest definitely helped me approach the transplant with a clearer head.
I can definitely say that the hardest part for me psychologicaly was the return to home and not having the energy to be involved with what was going on around me. Nothing could have prepared me for that.
I can say that the meetings with the psychologist helped a lot, as did the meditation, but it looks like you have that in your bag of tricks already
I wish you the best of luck with your transplant,
Stu
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Psychological counseling prior to stem cell transplant?
Hi Karena,
I don't know where you're being treated. My wife was treated at North York, and they provide access to psychological assistance, especially for cancer patients. The advantage is the doctor is familiar with the types of cancer they're providing counselling for. She found it immensely helpful.
Princess Margaret has a similar program. Perhaps your oncologist has recommendations for you.
Best of luck!
I don't know where you're being treated. My wife was treated at North York, and they provide access to psychological assistance, especially for cancer patients. The advantage is the doctor is familiar with the types of cancer they're providing counselling for. She found it immensely helpful.
Princess Margaret has a similar program. Perhaps your oncologist has recommendations for you.
Best of luck!
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
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