Last night I got up to get a drink of water, and half way across the room I got the 'blind staggers" to the point that I blacked out for a second, and landed squarely on my, er. dignity. Now my dignity is rather well padded; more padded than most, but I still hit hard...and now I'm very sore. Going up and down stairs is a pain in the...well, you know what it's a pain in. No bones broken, though; just bruised, er, dignity.
I've never fainted or passed out in my life before all this...and now I lose my balance frequently, and have fallen a couple of times. This morning was the only time that I ended up bruised, though.
I just found out (this morning, actually) from the ophthalmologist that because of the chemo, I need cataract surgery next month. As in...the cataracts I was told pre multiple myeloma diagnosis would take ten years to develop, have taken a whole three months to mess me up to the point of 'surgery or stop driving because you can't see." Wonderful.
(OK, actually, it is pretty good, because after the cataract surgery I'll not need glasses any more except for reading, and will see better than I have for years, so....gold lining to this particular cloud!)
Trouble is, I'm also looking at an SCT at the END of next month, so I have to fit all that in somehow.
My right hand hurts and tingles...when I knit the yarn actually hurts as it brushes over those fingers; bandaids help, as does feeding the yarn through my left hand. My LEFT hand shakes so much that I often can't hold a glass without spilling.
I'm running a fever of 99.5. I'm TOLD not to call until I run a fever of 100.5..........but my normal temperature is 96.6. Always has been. However, I'm not going to Urgent Care. Probably wouldn't go there if my temp WERE 100.5. If I did go, I'd be patted upon the head and told not to worry about it. I've been told 'not to worry about it" about pretty much everything so far, from the nausea to the fatigue to the balance issues to the...???
Here's the question for y'all; would someone give me a yard stick to measure with here? WHEN are the side effects of chemotherapy 'bad' enough to tell the oncologist, so that I won't be treated like a whiner and a hypochondriac? Or patted upon the head and told 'You are doing extremely well?"
What is 'extremely well?" How bad do these things have to get before anybody (but me) worries about 'em?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Yard sticks ...
Hi Dianaiad,
I am so sorry about your side effects and your midnight mishap... It is always tricky to know what should be reported and what will just run its course. I sat down with my doctor and asked how much she really wanted to know about what I experience, and she said "everything out of the ordinary" and so I email her when I have a concern. If she wants me to do something about it (go in for a flu test, etc...) she usually calls me within 10 min; if it is not an urgent situation, she will usually email me back within a couple hours or at the end of the day. I don't know what I would do without this open line of communication (worry more, I suppose!) and I know not all doctors are so accessible; however, there should be a nurse or somebody you can contact with your concerns on a regular basis. At the very least, make sure you keep a list of all these side effects so that you can discuss them at your next appointment. I have learned that many of the things I think of as trivial (a light rash) are not so trivial to my doctor.
I hope you feel better soon! Best regards, Dana
I am so sorry about your side effects and your midnight mishap... It is always tricky to know what should be reported and what will just run its course. I sat down with my doctor and asked how much she really wanted to know about what I experience, and she said "everything out of the ordinary" and so I email her when I have a concern. If she wants me to do something about it (go in for a flu test, etc...) she usually calls me within 10 min; if it is not an urgent situation, she will usually email me back within a couple hours or at the end of the day. I don't know what I would do without this open line of communication (worry more, I suppose!) and I know not all doctors are so accessible; however, there should be a nurse or somebody you can contact with your concerns on a regular basis. At the very least, make sure you keep a list of all these side effects so that you can discuss them at your next appointment. I have learned that many of the things I think of as trivial (a light rash) are not so trivial to my doctor.
I hope you feel better soon! Best regards, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Yard sticks ...
Hi Dianaiad,
I also was 63 when I was diagnosed. I would definitely tell the oncologist that you're falling.
Would you want to share what your induction therapy is? Have you gotten a 2nd opinion from a multiple myeloma specialist?
Best of luck.
Lin
I also was 63 when I was diagnosed. I would definitely tell the oncologist that you're falling.
Would you want to share what your induction therapy is? Have you gotten a 2nd opinion from a multiple myeloma specialist?
Best of luck.
Lin
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Lin
Re: Yard sticks ...
Thank you for your responses....
I'm on CyBorDe...cytoxin, bortezomib (Velcade) and dexamethasone. (and I'll bet I misspelled every single one of those). I'm at the end of a four cycle induction system (one more week after today), after which I get to do the workup and stuff for the SCT...oh, and fit in cataract surgery in there somewhere, AND a two week road trip with my octogenarian parents.
But no pressure.
I'm 'high risk" (p-17 deletion) and even though I'm 63, (OK, 64 next month) the doc at City of Hope is throwing out the possibility of an allogenic transplant after the auto, if one of my sisters is a match. I thought, wow, that's unusual, but if he suggests it, I'll go for it!
............but then, my son jumps off cliffs for a hobby, goes off-roading and is getting his pilots' license 'just because."...and he didn't get that tendency from his dad.
I'm on CyBorDe...cytoxin, bortezomib (Velcade) and dexamethasone. (and I'll bet I misspelled every single one of those). I'm at the end of a four cycle induction system (one more week after today), after which I get to do the workup and stuff for the SCT...oh, and fit in cataract surgery in there somewhere, AND a two week road trip with my octogenarian parents.
But no pressure.
I'm 'high risk" (p-17 deletion) and even though I'm 63, (OK, 64 next month) the doc at City of Hope is throwing out the possibility of an allogenic transplant after the auto, if one of my sisters is a match. I thought, wow, that's unusual, but if he suggests it, I'll go for it!
............but then, my son jumps off cliffs for a hobby, goes off-roading and is getting his pilots' license 'just because."...and he didn't get that tendency from his dad.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Yard sticks ...
I am a 12 yr multiple myeloma survivor and have seen many side effects & issues with doctors over the past 12 yrs.
First off tell your Oncologist everything! He needs to know so he can treat you with the right medications! Side effects can become permanent so you need to tell the doctor everything!
If he /she treats you like your an idiot let them know that their reaction is not what you expected from a professional! Then find a new doctor!! A Myeloma specialist , one that is knows about the new drugs, the side effects, and the Myeloma cancer itself! NOT just a doctor that specializes in SCT but in Myeloma! They need to treat many patients with multiple myeloma to be an expert! Never fear getting a second opinion , it is important to get one about your diagnoses and about your treatment options! If you do not know who to turn to, go to a local support group. If you do not have one around you then call the IMF, and the MMRF they may have some Doctor recommendations.
Good Luck & God speed,
Kathy
First off tell your Oncologist everything! He needs to know so he can treat you with the right medications! Side effects can become permanent so you need to tell the doctor everything!
If he /she treats you like your an idiot let them know that their reaction is not what you expected from a professional! Then find a new doctor!! A Myeloma specialist , one that is knows about the new drugs, the side effects, and the Myeloma cancer itself! NOT just a doctor that specializes in SCT but in Myeloma! They need to treat many patients with multiple myeloma to be an expert! Never fear getting a second opinion , it is important to get one about your diagnoses and about your treatment options! If you do not know who to turn to, go to a local support group. If you do not have one around you then call the IMF, and the MMRF they may have some Doctor recommendations.
Good Luck & God speed,
Kathy
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hoss4twa
Re: Yard sticks ...
Sorry to hear about your side effects. It is hard to tell you what could be causing them, since your post does not explain what meds you are on. But you should tell your Onc. about all your side effects. He may be able to adjust your doses. God Bless.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Yard sticks ...
UPDATE:
Remember the 'cataract' side effect? While I was visiting my daughters a week ago, we went shopping in a local Hobby Lobby. I saw a sign there...50% off...(I didn't buy it) that read:
There's
always
Always
ALWAYS
something to be thankful for.
I figured I could paint my own sign for 25 bucks.
Considering everything, I thought it was a wee bit Polyannaish for me, but....two days ago I had that cataract surgery I wasn't going to need for ten years. The next morning I woke up, went outside and wondered who washed the planet while I was asleep!
Woo hoo! No glasses! I can see the leaves on the trees across the street! I can see the signs! And that's with only one eye done!
Some side effects, in other words, can be rather cool.
Not many, mind you...but every once in awhile..........
Remember the 'cataract' side effect? While I was visiting my daughters a week ago, we went shopping in a local Hobby Lobby. I saw a sign there...50% off...(I didn't buy it) that read:
There's
always
Always
ALWAYS
something to be thankful for.
I figured I could paint my own sign for 25 bucks.
Considering everything, I thought it was a wee bit Polyannaish for me, but....two days ago I had that cataract surgery I wasn't going to need for ten years. The next morning I woke up, went outside and wondered who washed the planet while I was asleep!
Woo hoo! No glasses! I can see the leaves on the trees across the street! I can see the signs! And that's with only one eye done!
Some side effects, in other words, can be rather cool.
Not many, mind you...but every once in awhile..........
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Yard sticks ...
...oh, and my dignity is just fine now.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Yard sticks ...
Dear Dianaiad,
Passing out DEFINITELY rises to the level of notifying your doctor. While this may have been a run-of-the-mill fainting episode, your doctors would want to make sure that there are no problems with your blood pressure dropping excessively low, especially when you stand up -- a side effect that is common with Velcade. They would also want to make sure that there is no evidence of an irregular heart rhythm, etc.
When your doctors tell you to call them with a temperature of 100.5 or higher, they probably mean that a temperature that high needs evaluation, whether you are having symptoms of an infection or not. If you have a low grade fever such as you describe, it should be reported if you are having signs/symptoms of an infection. For example, if you have a temperature of 99.6 and you are short of breath and coughing up green phlegm, that is something that needs to be evalauted right away. If you have a fever of 99.6 for 24 hours after receiving zometa and it goes away, you can report it to your doctor at the next clinic visit. You have to use your judgement.
The tingling in the right hand is likely carpal tunnel syndrome. It sounds as though you like to knit. I have found that Velcade can often unmask symptoms of carpal tunnel syndrome in those who frequently use their hands as part of their work/hobbies. In other words, low level carpal tunnel syndrome that is not causing symptoms becomes symptomatic after starting Velcade. If it is not painful and simply a nuisance right now, you can bring it up at your next appointment. If it is painful or debilitating in any other way, you should bring up sooner rather than later.
Cataracts are common with steroids. 3 months is awfully fast, though. Perhaps you had them before starting treatment and they just got worse after starting the dex?
Hope this helps. Hang in there!
Pete V.
Passing out DEFINITELY rises to the level of notifying your doctor. While this may have been a run-of-the-mill fainting episode, your doctors would want to make sure that there are no problems with your blood pressure dropping excessively low, especially when you stand up -- a side effect that is common with Velcade. They would also want to make sure that there is no evidence of an irregular heart rhythm, etc.
When your doctors tell you to call them with a temperature of 100.5 or higher, they probably mean that a temperature that high needs evaluation, whether you are having symptoms of an infection or not. If you have a low grade fever such as you describe, it should be reported if you are having signs/symptoms of an infection. For example, if you have a temperature of 99.6 and you are short of breath and coughing up green phlegm, that is something that needs to be evalauted right away. If you have a fever of 99.6 for 24 hours after receiving zometa and it goes away, you can report it to your doctor at the next clinic visit. You have to use your judgement.
The tingling in the right hand is likely carpal tunnel syndrome. It sounds as though you like to knit. I have found that Velcade can often unmask symptoms of carpal tunnel syndrome in those who frequently use their hands as part of their work/hobbies. In other words, low level carpal tunnel syndrome that is not causing symptoms becomes symptomatic after starting Velcade. If it is not painful and simply a nuisance right now, you can bring it up at your next appointment. If it is painful or debilitating in any other way, you should bring up sooner rather than later.
Cataracts are common with steroids. 3 months is awfully fast, though. Perhaps you had them before starting treatment and they just got worse after starting the dex?
Hope this helps. Hang in there!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
9 posts
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