Darn Labs..it's MMMT
Comments
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Thanks to allRo10 said:Debbie
- Try today attend a Look Good, Feel Good program. It is sponsored by the American Cancer Society. It is a free program. You will get free make up and tips for applying it. They also showed ways to tie scarves and had some free wigs available at the one I went to. Hope you can find one in your area. My Cancer centers offer them at intervals.
- Good luck with your first chemo. I hope your port area is less painful now. You said your lab was not using the port. I have all my la s drawn from my port. On chemo days, they use the port to draw the lab, and leave the needle in for chemo.
- Hope you have a Merry Christmas.
I have not posted since before my original surgery in October for UPSC, and here I am now anticipating my second carbo/taxol treatment on Monday after Christmas, port in place. So it has been an interesting read to follow what has been happening with all of you and comparing that with my experience over these last couple months.
Two things I wasn't quite expecting through all this was the significant pain for about three days following the port insertion (though now it feels great and I am glad I got one) and the terrible bone/joint pain I had for days 3 to 6 following my first infusion. I could not get comfortable and could hardly eat or sleep. I lost 8 pounds, but have now gained back 4. Somehow my doctor's pre chemo comment that I might feel like I had the flu for a couple days did not begin to cover it! I never did have nausea, but I dread the thought of going through that butt-thigh-knee pain again. Surely there is a good pain medicine I can try this time. I will have a talk with my oncologist just prior to my second chemo and hope this can be addressed. By the way, my stage is 1A, grade 3 (UPSC) which is why I am having chemo at all. My doctor says this is my chance for a cure and not to waste it by resorting to observation only, giving this cancer a chance to sneak back and show up somewhere else.
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Hopeful,Hopeful162 said:Thanks to all
I have not posted since before my original surgery in October for UPSC, and here I am now anticipating my second carbo/taxol treatment on Monday after Christmas, port in place. So it has been an interesting read to follow what has been happening with all of you and comparing that with my experience over these last couple months.
Two things I wasn't quite expecting through all this was the significant pain for about three days following the port insertion (though now it feels great and I am glad I got one) and the terrible bone/joint pain I had for days 3 to 6 following my first infusion. I could not get comfortable and could hardly eat or sleep. I lost 8 pounds, but have now gained back 4. Somehow my doctor's pre chemo comment that I might feel like I had the flu for a couple days did not begin to cover it! I never did have nausea, but I dread the thought of going through that butt-thigh-knee pain again. Surely there is a good pain medicine I can try this time. I will have a talk with my oncologist just prior to my second chemo and hope this can be addressed. By the way, my stage is 1A, grade 3 (UPSC) which is why I am having chemo at all. My doctor says this is my chance for a cure and not to waste it by resorting to observation only, giving this cancer a chance to sneak back and show up somewhere else.
The butt, thigh, knee thing was never again as bad as it was with the first chemo.. Hopefully that will be true for you, too. It was awful, though, wasn't it? I remember I couldn't sit and I couldn't lie down. I spent an evening just circling my dining room table. It's a wonder I didn't wear down a path in the carpet!
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Severe joint pain from Carbo/Taxol chemotherapyConnieSW said:Hopeful,
The butt, thigh, knee thing was never again as bad as it was with the first chemo.. Hopefully that will be true for you, too. It was awful, though, wasn't it? I remember I couldn't sit and I couldn't lie down. I spent an evening just circling my dining room table. It's a wonder I didn't wear down a path in the carpet!
Hi, Hopeful,
I had Carbo/Taxol, 6 rounds, and my back pain started after the first chemo and lasted throughout the treatment. The back pain that I experienced was the worse of all my chemo symptoms. I ended up having two epidural shots spaced a couple of months apart. Finally, that gave me relief. From what I've read here, many women have experienced severe joint pain once the Carbo/Taxol chemo started. I sure hope you don't go through what I went through. Unlike Connie, I was unable to stand for more than a few minutes and walking was agony. I had relief only when sitting with my legs up.
Warm Wishes,
Cathy
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Spoke with the AmericanAbbycat2 said:Severe joint pain from Carbo/Taxol chemotherapy
Hi, Hopeful,
I had Carbo/Taxol, 6 rounds, and my back pain started after the first chemo and lasted throughout the treatment. The back pain that I experienced was the worse of all my chemo symptoms. I ended up having two epidural shots spaced a couple of months apart. Finally, that gave me relief. From what I've read here, many women have experienced severe joint pain once the Carbo/Taxol chemo started. I sure hope you don't go through what I went through. Unlike Connie, I was unable to stand for more than a few minutes and walking was agony. I had relief only when sitting with my legs up.
Warm Wishes,
Cathy
Spoke with the American Cancer Society and they gave up some info about the chemo related bone and joint pain. They said to start taking Vitamine E which is suppose to help coat the nerves plus also take tregratrol (sp) before and after chemo to help minimize the pain. They also suggested lidocaine patches. They sent me a ton of other info for life in the cancer lane that I'm still scrolling through and will pass on anything that I do find useful as I do the chemo dance, which will be accompanied by the merry cursing song. Still trying to keep my sense of humor box wide open because I know that is still my biggest defense against .........well, everything.
My best to you All!
Debbie
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Debbiedshapiro said:Spoke with the American
Spoke with the American Cancer Society and they gave up some info about the chemo related bone and joint pain. They said to start taking Vitamine E which is suppose to help coat the nerves plus also take tregratrol (sp) before and after chemo to help minimize the pain. They also suggested lidocaine patches. They sent me a ton of other info for life in the cancer lane that I'm still scrolling through and will pass on anything that I do find useful as I do the chemo dance, which will be accompanied by the merry cursing song. Still trying to keep my sense of humor box wide open because I know that is still my biggest defense against .........well, everything.
My best to you All!
Debbie
Love you sense of humor. Good luck.
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Chemo...Day1
Day One of Chemo went off without a hitch. The 5-steroid pills from the night before plus the 5-steroid pills morning PLUS the steroid injection given at the time of chemo this morning has me ready to jump in the squared circle and take on Hulk Hogan! Temp here is zero degrees and it was nothing to walk outside in a t-shirt. Didn't feel a thing. Had absolutely no nausea just a slight headache from the steroids. Otherwise, I'm ready to hit the spring cleaning now. lol. What a rush this stuff is.
Right after Chemo I went and visited with the American Cancer Society and received a free wig, night cap, hat and scarf. Got a great reciepe book and also found out I can stay at the Hope House at the American Cancer Society for free with will help with being only a one car family so John doesn't have to lose two days of work just to shuttle me around. There is a free transport van that will take me to chemo from the Hope house to and from chem and then the next day for the shot. So, John can drop me off for chemo on Wed morning and pick me back up Thursday night when he is done at work.
Big kudos to all my chemo nurses!!!!! They were all great.
Of course, with every good "high" there is the coming down part,so, with Claritan in hand I will be heading back to tomorrow for "the shot". I know the effects of all this won't kick in for about 48 hours, more or less, but I did take off today, tomorrow and friday to recover enough to hopefully be able to return to work next week.
Hope this info will help those just starting out for their first round of chemo though I know we are all different and will react differently. I still recommend asking your chemo nurses for xanax as it really does help, or I should say, it has really helped me getting to this first round. It took away the fear and the stress and allowed me to think about other things as well as thinking about all this cancer stuff without going over the deep end to far.
Take care and stay with the hope!
Debbie
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Debbiedshapiro said:Chemo...Day1
Day One of Chemo went off without a hitch. The 5-steroid pills from the night before plus the 5-steroid pills morning PLUS the steroid injection given at the time of chemo this morning has me ready to jump in the squared circle and take on Hulk Hogan! Temp here is zero degrees and it was nothing to walk outside in a t-shirt. Didn't feel a thing. Had absolutely no nausea just a slight headache from the steroids. Otherwise, I'm ready to hit the spring cleaning now. lol. What a rush this stuff is.
Right after Chemo I went and visited with the American Cancer Society and received a free wig, night cap, hat and scarf. Got a great reciepe book and also found out I can stay at the Hope House at the American Cancer Society for free with will help with being only a one car family so John doesn't have to lose two days of work just to shuttle me around. There is a free transport van that will take me to chemo from the Hope house to and from chem and then the next day for the shot. So, John can drop me off for chemo on Wed morning and pick me back up Thursday night when he is done at work.
Big kudos to all my chemo nurses!!!!! They were all great.
Of course, with every good "high" there is the coming down part,so, with Claritan in hand I will be heading back to tomorrow for "the shot". I know the effects of all this won't kick in for about 48 hours, more or less, but I did take off today, tomorrow and friday to recover enough to hopefully be able to return to work next week.
Hope this info will help those just starting out for their first round of chemo though I know we are all different and will react differently. I still recommend asking your chemo nurses for xanax as it really does help, or I should say, it has really helped me getting to this first round. It took away the fear and the stress and allowed me to think about other things as well as thinking about all this cancer stuff without going over the deep end to far.
Take care and stay with the hope!
Debbie
So glad your first chemo went well for you. Sounds like you have good plans with the Hope House to stay for your shot the next day. The American Cancer Society is such a great resource. Don't know that anyone has mentioned the big possibility of constipation after chemo. Lots of fluids are important. Many people use Miralax to keep them going. I used a stool softener ( colace - generoc called docusate sodium) And apple juice. Find what works for you and use it each chemo treatment.
We know what you mean about all the energy from the steroids. We used to say you feel like a hamster on its wheel just turning and turning.
I hope you already took your Claritin before you get the neulasta shot, and then several days after the shot. I first got Neupogen shots while I was hospitalized for febrile neutropenia. I had great pain after my second shot. So when I got a Neulasta shot after my chemo, I took the Claritin and the pain was much less.
i hope your time until the next chemo goes well for you. In peace and caring.
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Hi Debbie!dshapiro said:Thanks, Ro,
I did contact theThanks, Ro,
I did contact the American Cancer Society today and I have the addresses and phone numbers Now, just need to find the time before the 7th.
Oddly, the lab at my chemo center where my doc is housed, doesn't use the port for labs but I'm looking into a stat lab closer to home and it seems that will be done at a hospital so I'm going to put my foot down and make them draw it from the port. I mean I bought the dern thing so use it people!!!!
Merry Christmas to you too and to everyone here.
Debbie
First, I have been absent from this board for a few months. Second, glad to hear that you are doing as well as is reasonable with you current treatment. I just wanted to mention to you about the port. Sometimes they don't take labs from the port because they can get false data for some of the tests. I would talk to the doc about it, that you would prefer the port to be used and to explain to you when it shouldn't be used for labs. Sometimes the nurses actually make the mistake - they have to take the labs BEFORE they give you any fluids. My brother has had a port now for nearly 2 years so have gone through pretty much every issue possible, although his situation is not related to cancer at all. In most things, you as the patient have to pay attention to the order in which things are done.
Some history: I was diagnosed with MMMT late May 2014 with stage 1A but chose not to get the chemo unless more cancer appears. I have a high risk for other cancers due to Lynch Syndrome (which is associated with this type of cancer). I've been focused on vision issues, so really have not spent much time at all thinking about what-ifs for future cancer issues. I guess sometimes it's better to have something worse to focus on - not that I recommend it. I'm glad to hear that the ACS is very helpful, particularly since you live so far from where you are getting treatment. yay!
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round 2Ro10 said:Debbie
So glad your first chemo went well for you. Sounds like you have good plans with the Hope House to stay for your shot the next day. The American Cancer Society is such a great resource. Don't know that anyone has mentioned the big possibility of constipation after chemo. Lots of fluids are important. Many people use Miralax to keep them going. I used a stool softener ( colace - generoc called docusate sodium) And apple juice. Find what works for you and use it each chemo treatment.
We know what you mean about all the energy from the steroids. We used to say you feel like a hamster on its wheel just turning and turning.
I hope you already took your Claritin before you get the neulasta shot, and then several days after the shot. I first got Neupogen shots while I was hospitalized for febrile neutropenia. I had great pain after my second shot. So when I got a Neulasta shot after my chemo, I took the Claritin and the pain was much less.
i hope your time until the next chemo goes well for you. In peace and caring.
Wednesday will be my 2nd chemo treatment and I can't say as the effects from my first round was all that "doable".
Friday night, after the first round, I passed out cold. Just got all cold sweat like and just went kersplat! May have slightly cracked an ankle bone but not so bad as to have anything done about it. The next 5-days I was bed ridden and went into dehydration and probably should have called the doc but didn't until following Weds. So, prepping ahead to make sure I have enough bottled water and juices that I can keep by my bed. The second week I had on and off days of feeling ok but always back into the chemo effect. Bone pain from the Lunesta shot was horrible even with the claritin. Glad I was taking it as I would not have wanted to experience that bone pain full force. My hair just started to fall out today.......oh the joys of that!
I did return to work at least part time this week but hard to get into the customer service thing again. I will be staying at the Hope Lodge for my next round our chemo and if necessary, I'll stay there for IV infustions. Though I really don't want to be away from my family and it is always better to feel lousey in your own bed. I've doubled up again on my Vit E and still taking the Vit B complex which does help during the day and the Vit E has kept the neuropathy away so far.
I too hope my next round of chemo will be better.
Debbie
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Dehydrationdshapiro said:round 2
Wednesday will be my 2nd chemo treatment and I can't say as the effects from my first round was all that "doable".
Friday night, after the first round, I passed out cold. Just got all cold sweat like and just went kersplat! May have slightly cracked an ankle bone but not so bad as to have anything done about it. The next 5-days I was bed ridden and went into dehydration and probably should have called the doc but didn't until following Weds. So, prepping ahead to make sure I have enough bottled water and juices that I can keep by my bed. The second week I had on and off days of feeling ok but always back into the chemo effect. Bone pain from the Lunesta shot was horrible even with the claritin. Glad I was taking it as I would not have wanted to experience that bone pain full force. My hair just started to fall out today.......oh the joys of that!
I did return to work at least part time this week but hard to get into the customer service thing again. I will be staying at the Hope Lodge for my next round our chemo and if necessary, I'll stay there for IV infustions. Though I really don't want to be away from my family and it is always better to feel lousey in your own bed. I've doubled up again on my Vit E and still taking the Vit B complex which does help during the day and the Vit E has kept the neuropathy away so far.
I too hope my next round of chemo will be better.
Debbie
My husband has gotten dehydrated the last two summers and has passed out both times. I now know to go running for a couple bottles of G2 when that happens. Maybe you should take some fluids with you to your chemo. Since it goes on for 5 or more hours, it would be easy to get dehydrated. I was lucky that my hospital gave me cans of ginger ale to drink when I had mine.
I'm curious to know whether your oncologist gave you an anti-nausea drug like Emend. I never got sick, as I started the Emend a couple of days before chemo and took it for 5 days in a row.
I refused the Neulasta shot, so I didn't have the bone pain. I did get shortness of breath after about 3 rounds of chemo and I had to have a blood transfusion. My skin was very pasty looking. I had a few sores in my mouth after the second round, but they didn't last long. I still have peripheral neuropathy almost 5 years later. I was taking multivitamins and vitamin E at the time I went through chemo, and for years prior to that. About a year ago, I read that researchers suspect vitamin E destroys something that protects your body against cancer, so it has the opposite effect from what everyone used to think it had as an antioxidant. I've stopped taking it, and I haven't heard any more about the results of what was found in that study. My father used to swear by vitamin E. He thought it had kept him alive after a heart attack. However, he developed prostate cancer while on it, which is another thing that makes me wonder about the safety of taking it.
I hope your next round of chemo is better for you.
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Debbiedshapiro said:round 2
Wednesday will be my 2nd chemo treatment and I can't say as the effects from my first round was all that "doable".
Friday night, after the first round, I passed out cold. Just got all cold sweat like and just went kersplat! May have slightly cracked an ankle bone but not so bad as to have anything done about it. The next 5-days I was bed ridden and went into dehydration and probably should have called the doc but didn't until following Weds. So, prepping ahead to make sure I have enough bottled water and juices that I can keep by my bed. The second week I had on and off days of feeling ok but always back into the chemo effect. Bone pain from the Lunesta shot was horrible even with the claritin. Glad I was taking it as I would not have wanted to experience that bone pain full force. My hair just started to fall out today.......oh the joys of that!
I did return to work at least part time this week but hard to get into the customer service thing again. I will be staying at the Hope Lodge for my next round our chemo and if necessary, I'll stay there for IV infustions. Though I really don't want to be away from my family and it is always better to feel lousey in your own bed. I've doubled up again on my Vit E and still taking the Vit B complex which does help during the day and the Vit E has kept the neuropathy away so far.
I too hope my next round of chemo will be better.
Debbie
so sorry that your first round of chemo was so hard on you. I sure hope your second round is easier on you. Drinking lots of fluids is important While you are getting chemo as well as after. I hope you start your claritin before you have your chemo and continue for several days after. Glad you have the Hope House to stay at. I'll be praying for you. In peace and caring.
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