Hi Nancy!!
Sorry to hear you weren't able to attend the concert. That is sometimes the worse part of this not being able to go and do the things we love and enjoy most.
Thanks so much for the kudos on CR, I tend to be cautiously optimistic as sustained response is the what matters most...but I am happy about the CR.
OTOH, you are always so positive Nancy, so it is sometimes hard to get a feel for what you mean when it comes to pain or 'discomfort'. I know you have daughters though, so when you say the pain from Neupogen was not that bad in the scheme of things...if this was labor and you rated the pain on a scale of 1-10, where would you rank the pain from Neupogen.
For my last BM, the pain was an 8 with labor being a 10. It was my 4th one and it was really painful...all I could do was moan and wirth with groans...it still hurt a week later.
So, in the scheme of things for me, labor still ranks as the absolute worse pain, I ever had. Big time TEN!!
Forums
Re: My multiple myeloma journey to date
OMG Suzierose, Are you a mother of four? You have my complete admiration (you did anyhow). I own't go into my whole medical history but with having my children, one was with the help of painkillers (demerol) and one was not. I have to stress that these were 'normal' deliveries, nothing out of the ordinary. When I rather naively had my second child without meds, it hurt terribly...in retrospect I was probably rather foolish to let that happen. Up to that point in my life that was my worse pain, maybe a 9. But I have to say that fractured vertebrae, where the pain lasted for weeks, and I got into a whole lot of muscle spasms...now that was a 10 1/2. So by the time I got to neupogen, no big deal. Yes, it did hurt and I did take Tylenol 3's. I only ever take half a tab at a time since that seems to work for me. I would rate that pain a 4 - 6.
So, as Brenda pointed out earlier , best not to try to be a hero, and take whatever meds will hold whatever pain you get. Maybe it won't be as bad as you think. Anticipation is the worst thing...good luck anyways, and I am sure you will do fine! And if you feel in any way that it is getting out of hand, you can call the docs on call and talk with them about it.
So, as Brenda pointed out earlier , best not to try to be a hero, and take whatever meds will hold whatever pain you get. Maybe it won't be as bad as you think. Anticipation is the worst thing...good luck anyways, and I am sure you will do fine! And if you feel in any way that it is getting out of hand, you can call the docs on call and talk with them about it.
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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: My multiple myeloma journey to date
Eric Hofacket wrote:
> The skiing may not be the smartest thing to do but my whole body skeletal survey
> results were really good. Some lessions on the skul and thinning of some of the
> vertabrae, but no fractures. Luckly for me bone issues have not be a problem I have
> been on regular Aredia since being diagnosed in April last year. Skiing is taking a
> risk but I being conservative on the slopes.
Eric, I suggest that you discuss the skiing with your oncologist. You state that you have thinning of the vertebra which would indicate osteopenia or bone loss occurring. Standard xrays require 30% bone loss for osteopenia to be evident. As a result , you are at risk for compression fractures. At the time of my diagnosis, I had bone lesions and the absolute no-no's were water skiing , snowskiing and horse back riding and the obvious contact sports.
> The skiing may not be the smartest thing to do but my whole body skeletal survey
> results were really good. Some lessions on the skul and thinning of some of the
> vertabrae, but no fractures. Luckly for me bone issues have not be a problem I have
> been on regular Aredia since being diagnosed in April last year. Skiing is taking a
> risk but I being conservative on the slopes.
Eric, I suggest that you discuss the skiing with your oncologist. You state that you have thinning of the vertebra which would indicate osteopenia or bone loss occurring. Standard xrays require 30% bone loss for osteopenia to be evident. As a result , you are at risk for compression fractures. At the time of my diagnosis, I had bone lesions and the absolute no-no's were water skiing , snowskiing and horse back riding and the obvious contact sports.
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bond 007
Re: My multiple myeloma journey to date
HI Suzie, I think I mis-understood your post...that you had four bmb's. Sorry! You don't much discuss your personal life, and are very professional. I am glad that you shared your worries about the neupogen though...it's good to let things out sometimes.
Eric, I would take Bond's advice about the skiing. As wonderful as skiing is, you wouldn't want to incur a serious injury....that would sidetrack everything while you got better. I miss skiing, but actually quit it a few years before my multiple myeloma dx...it was because of sore knees and my growing realization that while I became a slower skier, the snowboarders were just flying by me and were actually missiles of sorts! But I will never forget the beauty of the runs at the tops of all the great mountains I skied. ..Whistler, Big Mountain, Sunshine, Lake Louise, Marmot Basin, Nakiska, Canada Olympic Park. They are in my 'minds eye' forever!
Eric, I would take Bond's advice about the skiing. As wonderful as skiing is, you wouldn't want to incur a serious injury....that would sidetrack everything while you got better. I miss skiing, but actually quit it a few years before my multiple myeloma dx...it was because of sore knees and my growing realization that while I became a slower skier, the snowboarders were just flying by me and were actually missiles of sorts! But I will never forget the beauty of the runs at the tops of all the great mountains I skied. ..Whistler, Big Mountain, Sunshine, Lake Louise, Marmot Basin, Nakiska, Canada Olympic Park. They are in my 'minds eye' forever!
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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: My multiple myeloma journey to date
Eric,
Please be VERY careful with your back as you would be mad at yourself if you mess it up when it could have been prevented. Instead of swimming, biking, and skiing you may end up carrying a gallon of milk with two hands like I do.
---Steve
Please be VERY careful with your back as you would be mad at yourself if you mess it up when it could have been prevented. Instead of swimming, biking, and skiing you may end up carrying a gallon of milk with two hands like I do.
---Steve
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SouthernYankee - Name: Steve S.
- When were you/they diagnosed?: Sep 29, 2011
- Age at diagnosis: 56
Re: My multiple myeloma journey to date
Hi Nancy,
Sorry about that. I should have written out BoneMarrow after discussing labor first!!
I did not have the courage to birth four! OMG, the first delivery was so awful..they had me on pitocin for 6 hours (terrible pain) like a 10.5..followed by c-sect. I only have 2 kids.
and that was God's plan cause labor was so bad for the first I vowed to NEVA have another...sigh..God had other plans.
I found some good information on pain relief from Neupogen, and god bless everyone in this forum because it basically says what many have shared as their individual experiences. Which is that NSAIDS work better for bone pain than narcotics....unbelievable... but here is the info:
"Neulasta is a time release form of Neupogen and is the equivalent of ten successive days of injections of the latter medication. Some oncologists try to reduce the pain by giving seven successive days of Neupogen (rather than the usual ten) in place of the Neulasta. The idea being that less total drug would mean less total pain but still be effective to support the white blood cell count. The downside is that daily home injections are required, rather than a one-time Neulasta dose lasting ten days.
Pain medication is important in this situation, and acetominophen is not the most effective choice because it doesn't work to reduce inflammation. A better choice would be an NSAID (non-steroidal anti-inflammatory drug) such as ibuprofen or naproxen. NSAIDS relieve inflammation and swelling and so can be very effective for most types of bone pain. Acetaminophen is not an NSAID and while helpful for many types of pain, it doesn't reduce inflammation and so is less effective here. NSAIDs must be used with care because they can cause stomach pain or ulcers, kidney problems, and bleeding problems, but surprisingly may be more effective than narcotic pain meds for bone pain.
If the ibuprofen/naproxen is not effective, ask your dad's doctor about trying a medication that combines an NSAID with a narcotic such as Combunox (oxycodone and ibuprofen), Percodan (oxycodone and aspirin) or Vicoprofen (hydrocodone and ibuprofen). The other choice is too add a pure narcotic, such as morphine, oxycodone, or hydromorphone to the NSAID as a separate drug. The disadvantage is more pills, but doing this allows you and your father to control separately the amounts of NSAID and narcotic, thereby reducing the possible side effects."
http://www.caring.com/questions/bone-pain-from-neulasta-after-chemo
Sorry about that. I should have written out BoneMarrow after discussing labor first!!
I did not have the courage to birth four! OMG, the first delivery was so awful..they had me on pitocin for 6 hours (terrible pain) like a 10.5..followed by c-sect. I only have 2 kids.
and that was God's plan cause labor was so bad for the first I vowed to NEVA have another...sigh..God had other plans.I found some good information on pain relief from Neupogen, and god bless everyone in this forum because it basically says what many have shared as their individual experiences. Which is that NSAIDS work better for bone pain than narcotics....unbelievable... but here is the info:
"Neulasta is a time release form of Neupogen and is the equivalent of ten successive days of injections of the latter medication. Some oncologists try to reduce the pain by giving seven successive days of Neupogen (rather than the usual ten) in place of the Neulasta. The idea being that less total drug would mean less total pain but still be effective to support the white blood cell count. The downside is that daily home injections are required, rather than a one-time Neulasta dose lasting ten days.
Pain medication is important in this situation, and acetominophen is not the most effective choice because it doesn't work to reduce inflammation. A better choice would be an NSAID (non-steroidal anti-inflammatory drug) such as ibuprofen or naproxen. NSAIDS relieve inflammation and swelling and so can be very effective for most types of bone pain. Acetaminophen is not an NSAID and while helpful for many types of pain, it doesn't reduce inflammation and so is less effective here. NSAIDs must be used with care because they can cause stomach pain or ulcers, kidney problems, and bleeding problems, but surprisingly may be more effective than narcotic pain meds for bone pain.
If the ibuprofen/naproxen is not effective, ask your dad's doctor about trying a medication that combines an NSAID with a narcotic such as Combunox (oxycodone and ibuprofen), Percodan (oxycodone and aspirin) or Vicoprofen (hydrocodone and ibuprofen). The other choice is too add a pure narcotic, such as morphine, oxycodone, or hydromorphone to the NSAID as a separate drug. The disadvantage is more pills, but doing this allows you and your father to control separately the amounts of NSAID and narcotic, thereby reducing the possible side effects."
http://www.caring.com/questions/bone-pain-from-neulasta-after-chemo
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: My multiple myeloma journey to date
SusieRose-
Good luck with your harvesting. The pain I had was like I had a bad case of flu and couldn't find a comfortable position. I took Tylenol and that helped to relieve it. Since I had been forewarned by the nurse that this might happen I wasn't overly upset about it. She had said that it was from the stem cells crowding the bone marrow and that it was a good sign. Once the stem cells were harvested the pain was gone. I had so many stem cells that they practically jumped out of my body. One day of harvesting and I was done. So, the pain was worth it.
Nancy in Phila
Good luck with your harvesting. The pain I had was like I had a bad case of flu and couldn't find a comfortable position. I took Tylenol and that helped to relieve it. Since I had been forewarned by the nurse that this might happen I wasn't overly upset about it. She had said that it was from the stem cells crowding the bone marrow and that it was a good sign. Once the stem cells were harvested the pain was gone. I had so many stem cells that they practically jumped out of my body. One day of harvesting and I was done. So, the pain was worth it.
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: My multiple myeloma journey to date
suzierose, I was not aware you had reached CR - so happy to hear it!
Regarding the stem cell harvest, it took both Neupogen and Mozobil and three days for me to get through my harvest. I experienced a lot of achiness, fatigue, and some nausea. Follow instructions from your doctor, particularly lots of water, to prepare for it and get lots of sleep. After my third day, I was wiped out and my wife said I looked more worn out than she had ever seen me. Oddly, the pain was not as bad as I had been warned it might be (perhaps a 5 or 6) on the 1-10 scale the hospital all uses when asking how much pain you're in.
By the way, I always find that so subjective that I have to wonder to its usefulness. If 0 is no pain at all, is ten excruciating death? If that's the case, I'm not sure I could tolerate anything over a 6 or 7. Or is ten just the max you can tolerate without drugs?
As Nancy indicated, once the stem cells start getting collected and leave your system, the pain subsides accordingly - it just took to the third day for me to get there. Hopefully you'll be like the other patients who were in that week with me - they all were done after the first day.
Regarding the stem cell harvest, it took both Neupogen and Mozobil and three days for me to get through my harvest. I experienced a lot of achiness, fatigue, and some nausea. Follow instructions from your doctor, particularly lots of water, to prepare for it and get lots of sleep. After my third day, I was wiped out and my wife said I looked more worn out than she had ever seen me. Oddly, the pain was not as bad as I had been warned it might be (perhaps a 5 or 6) on the 1-10 scale the hospital all uses when asking how much pain you're in.
By the way, I always find that so subjective that I have to wonder to its usefulness. If 0 is no pain at all, is ten excruciating death? If that's the case, I'm not sure I could tolerate anything over a 6 or 7. Or is ten just the max you can tolerate without drugs?
As Nancy indicated, once the stem cells start getting collected and leave your system, the pain subsides accordingly - it just took to the third day for me to get there. Hopefully you'll be like the other patients who were in that week with me - they all were done after the first day.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: My multiple myeloma journey to date
I had the worst pain of my life in my back two days before stem cell harvesting began. I had read to that once harvesting began the pain would go away. I did not know how I was going to make through those two days when the most potent pain killers they were giving me were doing nothing. When I finally was able to take some ibuprofen the pain went away in hours. Suzzierose posted earlier some information she found that anti-inflammatory medications are the best thing for bone pain in these situations and that was certainly my experience. I also read that severe bone pain often means a good stem cell harvest and that also was my experience. I understand they need a minimum of 2 million cells and they got 24 million out of me, and they stopped early after only two days. City of hope said I set the high for the month. It was not until I started harvesting that I learned as much as up to 25 percent of people do not get enough cells harvested for a transplant, I was feeling pretty good. The excess stem cell are frozen and thankfully will be available in the future should I need them. I asked what the all-time record for a harvest was, and this broke my heart to hear this, but it was from a 4 year old boy who produced 70 million. I do not know what aliment he had that required stem cells.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: My multiple myeloma journey to date
Hi Kevin!
You write:
"By the way, I always find that so subjective that I have to wonder to its usefulness. If 0 is no pain at all, is ten excruciating death? If that's the case, I'm not sure I could tolerate anything over a 6 or 7. Or is ten just the max you can tolerate without drugs?"
I find that the scale 1-10 is far more individual patient focused subjective. So say you have an individual who has high pain tolerance, well what you might rank a 6-7 they would say to doc 4-5. Doctor would give less or no painkiller to 'suckin it up" patient. While you would get pain meds you need when you say 6 or 7. Cause most folks agree when you talk numbers vs. using the words 'lot of discomfort' from patients who don't like complaining but are feeling 6-7 level pain or 'little discomfort' from high pain tolerance patient.
Folks agree far more on numbers than words that describe pain.
So, if you rank your pain below 5 most folks feel it is not bad or moderate. Once the pain gets above 5 most folks and medical personnel think oh, he/she is in pain. And when you say 8 or 9? Well, you are hurting bad.
When folks say 10, it is the worst pain EVER for them....not death.
Typically women rank labor @ 10..and for me BM is definitely 8-9.
Medical personnel are trained that treating pain is not essential..i.e. you never die from pain. Discomfort won't kill you. Might make you a grouchy patient but it will not kill you. Which is why they came up with scale to remove physician subjectivity from decision.
That is why it is so critical to rank your pain when you need pain meds and not just have medical personnel judgment where they can give you aspirin, cause their training is you are not going to die from pain.The abusers are what they worry about.
You can walk into any pharmacy and get emergency insulin/ hypertensive/asthma meds without a prescription, but if you complain of pain..they will send you to ER. IOW's doctors/nurses/ pharmacists are trained that it is better to error on the side of less/no pain med than possibly giving a painkiller that could be abused.
Most patients in pain would vehemently disagree with that philosophy, no?
Which is a long way of sayin....I LOVE the 1-10 scale!!
Best communicator for pain there is based on MY subjectivity (whose else matters when you're in pain).
Bottomline..IMHO, it's very useful.
You write:
"By the way, I always find that so subjective that I have to wonder to its usefulness. If 0 is no pain at all, is ten excruciating death? If that's the case, I'm not sure I could tolerate anything over a 6 or 7. Or is ten just the max you can tolerate without drugs?"
I find that the scale 1-10 is far more individual patient focused subjective. So say you have an individual who has high pain tolerance, well what you might rank a 6-7 they would say to doc 4-5. Doctor would give less or no painkiller to 'suckin it up" patient. While you would get pain meds you need when you say 6 or 7. Cause most folks agree when you talk numbers vs. using the words 'lot of discomfort' from patients who don't like complaining but are feeling 6-7 level pain or 'little discomfort' from high pain tolerance patient.
Folks agree far more on numbers than words that describe pain.
So, if you rank your pain below 5 most folks feel it is not bad or moderate. Once the pain gets above 5 most folks and medical personnel think oh, he/she is in pain. And when you say 8 or 9? Well, you are hurting bad.
When folks say 10, it is the worst pain EVER for them....not death.
Typically women rank labor @ 10..and for me BM is definitely 8-9.
Medical personnel are trained that treating pain is not essential..i.e. you never die from pain. Discomfort won't kill you. Might make you a grouchy patient but it will not kill you. Which is why they came up with scale to remove physician subjectivity from decision.
That is why it is so critical to rank your pain when you need pain meds and not just have medical personnel judgment where they can give you aspirin, cause their training is you are not going to die from pain.The abusers are what they worry about.
You can walk into any pharmacy and get emergency insulin/ hypertensive/asthma meds without a prescription, but if you complain of pain..they will send you to ER. IOW's doctors/nurses/ pharmacists are trained that it is better to error on the side of less/no pain med than possibly giving a painkiller that could be abused.
Most patients in pain would vehemently disagree with that philosophy, no?
Which is a long way of sayin....I LOVE the 1-10 scale!!
Best communicator for pain there is based on MY subjectivity (whose else matters when you're in pain).
Bottomline..IMHO, it's very useful.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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