My genetic info for the Myeloma is in and I have the more benign genetic make-up. It was a ray of sunshine in a chemo fog.
My Vel/Dex is working and with some time in chemo my body is tolerating very well I'm told. I work still, no disability insurance, and coping. This weekend I am tired to the point of exhaustion. The darn Dex is like revisiting the 70's. I don't sleep on the stuff for a day or two.
As a new cancer patient I am still resentful over the way this treatment takes over ones life. I try to accept it but some days I'm just cranky, Dex seems to feed that too, probably my imagination.
My M spike is falling regularly and my blood counts are much better already. The first great result of treatment has been a major reduction in bone pain. i have arthritis and for a year or so I thought my arthritis was out of control. i was concerned with being crippled. It turns out it was Myelomic bone pain.
I have a quick question please. Do I need to be aware that this fatigue might continue to accumulate? My nurse, a great gal, warned me that the effect is cumulative and I need to start managing for fatigue immedieately. She cautioned about getting behind the "fatigue curve" and really struggling to catch up. Does this match others experience? At this time I have a few months of this course before moving on to round 2. I can still fight real good, only thing is I'm only good for a real short round and I'm looking for a stool!! Losing work would be a disaster right now.
Forums
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Early chemo report and prognosis. Fatigue advice please?
Well Myeloma aswered my question. I pushed hard last weekand and came down with a severe cold as a result. Wow am I sick! This is my week off chemo so by the time next Tuesday roles around i should be healthy enough for more chemo.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Early chemo report and prognosis. Fatigue advice please?
Canuck Bob, you are making me laugh, and bringing back memories! You and EJ sound very similar. He also has a more benign multiple myeloma and had Velcade/dex as his induction therapy. Before we knew what dex could do to a person he spent a frenetic few days showing out of town guests around. His temp spiked to 101.7 and we made a mad dash to the emergency room.
After that he learned to harness his dex energy a bit -- a night up focusing on projects that needed to get done, and into bed very early the next night to catch up on sleep. EJ has always been a bit of a night owl, but the fatigue has him in bed by 10:00 most nights. He finds he really does need his sleep these days.
Good luck!
Lyn
After that he learned to harness his dex energy a bit -- a night up focusing on projects that needed to get done, and into bed very early the next night to catch up on sleep. EJ has always been a bit of a night owl, but the fatigue has him in bed by 10:00 most nights. He finds he really does need his sleep these days.
Good luck!
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: Early chemo report and prognosis. Fatigue advice please?
I finished my treatment Dec/Rev Feb 2011. The next step is a maintainace of the same drugs. Because of the side effects of the Decadron (?) including tiredness, I was able to talk them out of continuing with Decadron. Currently I am only on Revlimid 25mg. As soon as they took me off Decadron my body shut down for about two months and I was unable to get out of bed. I was told later it was because I was taken off it too quickly. My energy level has come back to about half of a normal person. Also because of the steroid I developed cateracts in both eyes and my vision in one eye is now not the best. I hope this helps.
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RFI71 - Name: Rich
- When were you/they diagnosed?: Nov 1997
- Age at diagnosis: 26
Re: Early chemo report and prognosis. Fatigue advice please?
I had lots of fatigue when I first began chemo. Major fatigue after my SCT....But I work and it was really hard at first, but now I make it through the day without having to lie down and rest. It all got better, but I still get really tired some days.....usually a few days after chemo. The thing that helps me the most is pushing myself to exercise often. And I have had to learn to really listen to my body-if I feel tired, I just need to relax and rest. I am taking Velcade, dex, and Revlimid.
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Sherri Parker
Re: Early chemo report and prognosis. Fatigue advice please?
I have a couple of things to share here about this:
1: the exhaustion on Velcace / Dex is very real. (I had radiation as well earlier this spring, and it also has a significant exhaustion component)... there's no doubt about it. I am off work, home-bound, and on the 'week off" of cycle three of a 4 x 21-day chemo program. the past week I've been crashing kind of regularly: I had two 1-hr naps today, after a good night of sleep. Mind, I do have nights of insomnia as well, from the Dex, and am up almost every morning at 5AM (usual was 7:30 for years)... so that may have something to do with it.
2: talk to your onc about the dex crash... I am weaning between sessions now, and it makes a difference. I am on Decadron 20mg 2x a day, days 1-4 and 9-12... and I wean for 4 days after day 12. I still crash, but it's about a day now. The first go-round I was practically catatonic for 3 days.... this is way better!
The advice on fatigue? According to what I've read, you basically have to go with it. Fighting it will solve nothing, and probably end up hurting you. The fatigue is there to slow you down so you can heal and fight this cancer, so don't ignore or resent it, I guess.
1: the exhaustion on Velcace / Dex is very real. (I had radiation as well earlier this spring, and it also has a significant exhaustion component)... there's no doubt about it. I am off work, home-bound, and on the 'week off" of cycle three of a 4 x 21-day chemo program. the past week I've been crashing kind of regularly: I had two 1-hr naps today, after a good night of sleep. Mind, I do have nights of insomnia as well, from the Dex, and am up almost every morning at 5AM (usual was 7:30 for years)... so that may have something to do with it.
2: talk to your onc about the dex crash... I am weaning between sessions now, and it makes a difference. I am on Decadron 20mg 2x a day, days 1-4 and 9-12... and I wean for 4 days after day 12. I still crash, but it's about a day now. The first go-round I was practically catatonic for 3 days.... this is way better!
The advice on fatigue? According to what I've read, you basically have to go with it. Fighting it will solve nothing, and probably end up hurting you. The fatigue is there to slow you down so you can heal and fight this cancer, so don't ignore or resent it, I guess.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Early chemo report and prognosis. Fatigue advice please?
There is a very real condition known as cancer-related fatigue that stems from having cancer, cancer treatments, and/or low blood levels. The important blood test numbers to watch for related directly to possible fatigue are: WBC, Hgb and platelets. If your Hgb is low your cells aren't getting enough oxygen to do their job efficiently.
While I was taking Rev/Dex I was tired a good part of the time. My fatigue began to lessen some as the cycles of the medications did the job that they were supposed to do on the Myeloma and my Hgb began to move towards normal. After ASCT I was wiped out for a few months because of low blood levels and because of recovering from the assault of the high dose chemo.
Again as my blood levels approached normal and then moved into the normal range the fatigue lessened and I began to do all of the things that I used to do. There are still days when I am wiped out and have to slow down. I have to be very careful to listen to what my body is telling me.
Exercise is the best way to lessen the fatigue. This doesn't mean running a marathon tomorrow, but it does mean doing some light exercise to your tolerance every day. I am a physical therapist who treats people with cancer-related fatigue and our guideline for how strenuous to make the exercise load is for the person to report that it is of moderate intensity for them. We also monitor blood levels throughout their course of treatment.
I know that where I had my transplant the nurses told me what the distance around the unit was on my first day. They told me that they expected me to get out of my room and walk laps around the unit every day. Some people asked to have stationary bikes brought to their rooms. I recently talked with the director of PT in that hospital and she told me that they rarely have any bikes in storage because between the stem cell transplant unit and the lung transplant unit, they are all in paitent's rooms. She has had to order more bikes because of the demand.
So, try to do some exercise daily. Walking is always a good place to start. Start out slowly and progress slowly to tolerance. The recommendation is that you work up to no more than 1 hour of exercise - stretching, strengthening and aerobics- 5 days per week. See if there is a PT program in your area that treats people with cancer-related fatigue.
I hope this helps,
Nancy
PT in Phila and multiple myeloma patient
While I was taking Rev/Dex I was tired a good part of the time. My fatigue began to lessen some as the cycles of the medications did the job that they were supposed to do on the Myeloma and my Hgb began to move towards normal. After ASCT I was wiped out for a few months because of low blood levels and because of recovering from the assault of the high dose chemo.
Again as my blood levels approached normal and then moved into the normal range the fatigue lessened and I began to do all of the things that I used to do. There are still days when I am wiped out and have to slow down. I have to be very careful to listen to what my body is telling me.
Exercise is the best way to lessen the fatigue. This doesn't mean running a marathon tomorrow, but it does mean doing some light exercise to your tolerance every day. I am a physical therapist who treats people with cancer-related fatigue and our guideline for how strenuous to make the exercise load is for the person to report that it is of moderate intensity for them. We also monitor blood levels throughout their course of treatment.
I know that where I had my transplant the nurses told me what the distance around the unit was on my first day. They told me that they expected me to get out of my room and walk laps around the unit every day. Some people asked to have stationary bikes brought to their rooms. I recently talked with the director of PT in that hospital and she told me that they rarely have any bikes in storage because between the stem cell transplant unit and the lung transplant unit, they are all in paitent's rooms. She has had to order more bikes because of the demand.
So, try to do some exercise daily. Walking is always a good place to start. Start out slowly and progress slowly to tolerance. The recommendation is that you work up to no more than 1 hour of exercise - stretching, strengthening and aerobics- 5 days per week. See if there is a PT program in your area that treats people with cancer-related fatigue.
I hope this helps,
Nancy
PT in Phila and multiple myeloma patient
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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: Early chemo report and prognosis. Fatigue advice please?
Thank you, Nancy, for this really detailed and informative posting. I'm always glad when I come to this forum and see that there's a posting from you.
Re: Early chemo report and prognosis. Fatigue advice please?
Another very likely cause of the chemo exhaustion (tho it's just theoretical... I haven't read anything saying so) is probably that the body is working REALLY hard at rebuilding the good stuff the chemo is knocking down. I my blood counts (hemo/plateletes/etc) are staying up at normal levels (they are down a bit, but still inside the norms), so that's a good guess as to another cause for me being so zonked, I would think. It takes energy (and a lot of good food) to keep the body up, right?
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Early chemo report and prognosis. Fatigue advice please?
Thank you everyone. I've been busy of course!
The fatigue is continuing but much more manageable. My response to chemo has been excellent and my numbers are all moving in the right direction. My Hgb is much higher but the fatigue remains about the same, thats why I agree with Snip's analysis, rapid recovery is just as tiring as a rapid assualt on Myeloma.
I have received word that I'm a prime candidate for SCT and will be immersed in the workup within a week. My Oncologist is very happy they fit me in so soon. Our local Tom Baker Center is a world recognized centre for SCT and apparently performed the first one ever. I'm in the best hands and I do appreciate Canadian Health Care very much these days. i even stopped complaining about our tax burden, lol.
If I may share some good news. My fatigue was related directly to a very stringent and non-sustainable work effort. I responded to the fears about my families future by preparing to work myself into the ground. That is a knuckleheads game!
Yesterday I closed a very special deal, I'm in the Alberta Oilpatch, and my family is now without worry regardless of the outcome of cancer. My partner and I were so excited on Friday morning and within 30 minutes I was under the drip but very exhausted. I'm surprised at the energy sapping my emotions, both positive and negative, have on me.
Nancy I started your regime already and have added a return to a hobby. I like to shoot tin cans and paper targets. I recently drew a large cartoon of a Myeloma cell and shot it full of holes in the forest. Now that is some serious therapy!!
The fatigue is continuing but much more manageable. My response to chemo has been excellent and my numbers are all moving in the right direction. My Hgb is much higher but the fatigue remains about the same, thats why I agree with Snip's analysis, rapid recovery is just as tiring as a rapid assualt on Myeloma.
I have received word that I'm a prime candidate for SCT and will be immersed in the workup within a week. My Oncologist is very happy they fit me in so soon. Our local Tom Baker Center is a world recognized centre for SCT and apparently performed the first one ever. I'm in the best hands and I do appreciate Canadian Health Care very much these days. i even stopped complaining about our tax burden, lol.
If I may share some good news. My fatigue was related directly to a very stringent and non-sustainable work effort. I responded to the fears about my families future by preparing to work myself into the ground. That is a knuckleheads game!
Yesterday I closed a very special deal, I'm in the Alberta Oilpatch, and my family is now without worry regardless of the outcome of cancer. My partner and I were so excited on Friday morning and within 30 minutes I was under the drip but very exhausted. I'm surprised at the energy sapping my emotions, both positive and negative, have on me.
Nancy I started your regime already and have added a return to a hobby. I like to shoot tin cans and paper targets. I recently drew a large cartoon of a Myeloma cell and shot it full of holes in the forest. Now that is some serious therapy!!
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
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