Darn Labs..it's MMMT
Comments
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Finally had my full body scandshapiro said:Thanks, Cathy. That's my
Thanks, Cathy. That's my decision too. I am going for the chemo and notified my doc to get the schedule rolling.
Debbie
Finally had my full body scan today. Only took 4-hours. (yeesh!) CT only took about 10-15 mins everything else was all prep work with labs, due to my low GFR, then had to have half a bag of fluid to help break up the contrast and of course drink the nasty drink. Drink was much better than it used to be but still tastes like water from the hose.
After the CT was done and I was half way to my car, the nurse came running up to me saying she had to finish the other half of the bag of fluids. So, back in I went for another stick but this vein blew and the fluid just went into my arm and not the vein. So, stopped that and was told to drink 80 oz of water today and tomorrow......
After all this that CT report had better come back squeeky clean!
Debbie
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Thinking of you.dshapiro said:Finally had my full body scan
Finally had my full body scan today. Only took 4-hours. (yeesh!) CT only took about 10-15 mins everything else was all prep work with labs, due to my low GFR, then had to have half a bag of fluid to help break up the contrast and of course drink the nasty drink. Drink was much better than it used to be but still tastes like water from the hose.
After the CT was done and I was half way to my car, the nurse came running up to me saying she had to finish the other half of the bag of fluids. So, back in I went for another stick but this vein blew and the fluid just went into my arm and not the vein. So, stopped that and was told to drink 80 oz of water today and tomorrow......
After all this that CT report had better come back squeeky clean!
Debbie
Hi Debbie! I am into my 21rst month since being diagnosed stage IIIc UPSC, second opinion post surgery had me at stage IVA. I have yet to be NED and in fact am living with cancer - on my third round of different types of treatments (not including radiation) for five metastic tumors. Sounds bad but I am doing well, treatments every three weeks and working full time, riding horses and trying to stay focused on life and living it well. Here is the thing about chemo that someone told me and holds true - everything that happens is temporary. You might feel like you have a bad flu, then you recover, have some pretty good days and do it all over again. It is amazing how one recovers. I have yet to have an infection and get through it all pretty well aside from being tired. You can totally do this! Be kind to yourself, be open to the experience and give yourself permission to have bad days too. I had some amazing experiences because of my cancer and I am grateful for that. Stay Strong and Thrive! Keeping you in my prayers. Anne
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Thank you, Anne, for yourAWK said:Thinking of you.
Hi Debbie! I am into my 21rst month since being diagnosed stage IIIc UPSC, second opinion post surgery had me at stage IVA. I have yet to be NED and in fact am living with cancer - on my third round of different types of treatments (not including radiation) for five metastic tumors. Sounds bad but I am doing well, treatments every three weeks and working full time, riding horses and trying to stay focused on life and living it well. Here is the thing about chemo that someone told me and holds true - everything that happens is temporary. You might feel like you have a bad flu, then you recover, have some pretty good days and do it all over again. It is amazing how one recovers. I have yet to have an infection and get through it all pretty well aside from being tired. You can totally do this! Be kind to yourself, be open to the experience and give yourself permission to have bad days too. I had some amazing experiences because of my cancer and I am grateful for that. Stay Strong and Thrive! Keeping you in my prayers. Anne
Thank you, Anne, for your great words of wisdom. I am beyond thrilled to report my CT yesterday was squeaky clean though I do still have to do chemo but at least now it is more on the preventative side and not so much on the attack side. I truly hope that one day soon you will also get a Clean-Slate CT too! Really don't think I could have held on to my sanity without the wonderful ladies here !!!
Blessing to you ALL
Debbie
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Debbiedshapiro said:Thank you, Anne, for your
Thank you, Anne, for your great words of wisdom. I am beyond thrilled to report my CT yesterday was squeaky clean though I do still have to do chemo but at least now it is more on the preventative side and not so much on the attack side. I truly hope that one day soon you will also get a Clean-Slate CT too! Really don't think I could have held on to my sanity without the wonderful ladies here !!!
Blessing to you ALL
Debbie
I am so glad you got a clean CAT scan. Good luck with your chemo treatments. Are you getting a port? You talked about the vein blowing with fluids after your CAT scan. You sure do not want the chemo going into your tissues. Glad your MMMT was caught early. In peace and caring.
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QuestionRo10 said:Debbie
I am so glad you got a clean CAT scan. Good luck with your chemo treatments. Are you getting a port? You talked about the vein blowing with fluids after your CAT scan. You sure do not want the chemo going into your tissues. Glad your MMMT was caught early. In peace and caring.
Yep, having port installed on Monday but I do have a question, the chemo treaching nurse said that I have to go back to Doc's office the day after chemo for an injection and that the injection couldn't be done elsewhere (closer to home) due to the side effects.....does anyone else get this shot and if so, what is it for? Haven't seen that discussed yet or I've missed it while scrolling thru all the infor here.
Thanks All and have a wonderful "free" day!
Debbie
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Debbie, I am glad you askeddshapiro said:Question
Yep, having port installed on Monday but I do have a question, the chemo treaching nurse said that I have to go back to Doc's office the day after chemo for an injection and that the injection couldn't be done elsewhere (closer to home) due to the side effects.....does anyone else get this shot and if so, what is it for? Haven't seen that discussed yet or I've missed it while scrolling thru all the infor here.
Thanks All and have a wonderful "free" day!
Debbie
Debbie, I am glad you asked this!
First, what kind of chemo are you getting? I think most of us start with the carboplatin and taxol drug, but it could be different.
I work with a woman who had to get a shot of Neulasta to help build up their white cell count after her chemo for breast cancer. I didn't get any shots and am curious what the other women here did.
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I'm getting the carboplatinNoTimeForCancer said:Debbie, I am glad you asked
Debbie, I am glad you asked this!
First, what kind of chemo are you getting? I think most of us start with the carboplatin and taxol drug, but it could be different.
I work with a woman who had to get a shot of Neulasta to help build up their white cell count after her chemo for breast cancer. I didn't get any shots and am curious what the other women here did.
I'm getting the carboplatin and taxol too, 6-treatments, so don't know what this shot thing is all about but I'll have the answer after Tuesday and let ya know! It might have something to do with my kidneys as my grf is low at 48. But, just guessing there.
Debbie
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What is grf? I am notdshapiro said:I'm getting the carboplatin
I'm getting the carboplatin and taxol too, 6-treatments, so don't know what this shot thing is all about but I'll have the answer after Tuesday and let ya know! It might have something to do with my kidneys as my grf is low at 48. But, just guessing there.
Debbie
What is grf? I am not familiar with that. I might say "DUH!" when you tell me, but I have so many acronyms in my daily life I can't keep track of them all.
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neulastaNoTimeForCancer said:What is grf? I am not
What is grf? I am not familiar with that. I might say "DUH!" when you tell me, but I have so many acronyms in my daily life I can't keep track of them all.
It is probably a Neulasta shot to help build up your white cell count. I had six of them and no reaction. Some people have some serous bone pain. I was told to take one Claratin a day. I had 18 chemos. One each week for three weeks, a Neulasta shot and then one week off. I was a stage 3c UPSC and finished treatment including my radiation in Feb. Feel good and looking forward to one year of NED.
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Debbiedshapiro said:Question
Yep, having port installed on Monday but I do have a question, the chemo treaching nurse said that I have to go back to Doc's office the day after chemo for an injection and that the injection couldn't be done elsewhere (closer to home) due to the side effects.....does anyone else get this shot and if so, what is it for? Haven't seen that discussed yet or I've missed it while scrolling thru all the infor here.
Thanks All and have a wonderful "free" day!
Debbie
i am glad you are getting your port. The shot you will be getting the day after chemo is a Neulasta shot. It is to stimulate white blood cell production. The shots do cause bone pain. I found that taking Claritin the day before the shot and a couple of days after did reduce the pain. I only needed two shots even though I have had 19 chemo treatments (From 3 different rounds of chemo). Some doctors automatically give the shots, and others wait until the white blood count drops. I was lucky on the whole I had good blood counts. Good luck with everything. In peace and caring.
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gfrRo10 said:Debbie
i am glad you are getting your port. The shot you will be getting the day after chemo is a Neulasta shot. It is to stimulate white blood cell production. The shots do cause bone pain. I found that taking Claritin the day before the shot and a couple of days after did reduce the pain. I only needed two shots even though I have had 19 chemo treatments (From 3 different rounds of chemo). Some doctors automatically give the shots, and others wait until the white blood count drops. I was lucky on the whole I had good blood counts. Good luck with everything. In peace and caring.
Sorry, GFR is for kidney function. Your kidney should function above a certain level or, a fully functioning kidney would be like 70 or above. My kidneys are in decline and have been but it is a slow decline. I have a real concern going that all the surgery, more specifically the anesthesia, from my last two back to back procedures may have already reduced my GFR and now with chemo starting I'm afraid I'll go right from chemo to dialisys when chemo is done.
Since my hysterectomy was on Nov 6th I'm not sure if the hospital will run blood work prior to my port placement since it is being done at the same hospital. Hope they do.
In truth, I'm beginning to question a few things about chemo. Like, my carcinosarcoma was staged 1A and was found inside a polyp inside the uterus which has been removed. Chemo is a preventative measure like chasing down one wayward cell out of the millions in my body. I am asking the question.......is this really needed at this time especially now that the CT came back clean? I know this is a **** of a cancer and that I am hugely lucky it was found so early. So, questioning the toll this will take on my body, mind, life, family and, well, you all know those questions. I also know that should the cancer come back within the next year hitting a different organ I won't be able to have the same chemo done but will have to move to a more toxic therapy. So, do I wait and see or do I just get this done and get on with life?
I know these are questions everyone here has asked themselves and I know I'm the only one who can answer these questions for me........But, really? So, that's my rant for today. Just another day in the cancer lane of life.
Thanks, All, for letting me get this out which I hope will help me with my decision. You guys are all GREAT!
Debbe
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good questionsdshapiro said:gfr
Sorry, GFR is for kidney function. Your kidney should function above a certain level or, a fully functioning kidney would be like 70 or above. My kidneys are in decline and have been but it is a slow decline. I have a real concern going that all the surgery, more specifically the anesthesia, from my last two back to back procedures may have already reduced my GFR and now with chemo starting I'm afraid I'll go right from chemo to dialisys when chemo is done.
Since my hysterectomy was on Nov 6th I'm not sure if the hospital will run blood work prior to my port placement since it is being done at the same hospital. Hope they do.
In truth, I'm beginning to question a few things about chemo. Like, my carcinosarcoma was staged 1A and was found inside a polyp inside the uterus which has been removed. Chemo is a preventative measure like chasing down one wayward cell out of the millions in my body. I am asking the question.......is this really needed at this time especially now that the CT came back clean? I know this is a **** of a cancer and that I am hugely lucky it was found so early. So, questioning the toll this will take on my body, mind, life, family and, well, you all know those questions. I also know that should the cancer come back within the next year hitting a different organ I won't be able to have the same chemo done but will have to move to a more toxic therapy. So, do I wait and see or do I just get this done and get on with life?
I know these are questions everyone here has asked themselves and I know I'm the only one who can answer these questions for me........But, really? So, that's my rant for today. Just another day in the cancer lane of life.
Thanks, All, for letting me get this out which I hope will help me with my decision. You guys are all GREAT!
Debbe
you have good questions. I was originally diagnosed with stege 1A - MMT simialr to you on 12/12/12 and decided to have a second opinon. We chose Dana Farber Cancer institute in Boston Mass. they came back NOT MMT, Stage 1A but high grade. THis was a rare change in diagnosis that the consulting oncologist called me at home at night to discuss and told me she had already called my oncologist. We decided to break the tie and sent for a third opinion at Memorial Sloan Kittery Cancer Institute in NY NY. They also came back with NOT MMT but Stage 1A - high grade. even though it wasn't MMT all three suggested chemo and the reason was that both MMT and high grade isn't predicatble and you don't know if there are any microscopic cells that CT Scans don't find. However, i am sharing about the second opinions and here third that if you have these questions or doubts on your treatment is getting a second opinion an option for you. Have you discussed your concerns on chemo and current kidney function?
my theory is if we are questioning we might have doublt and treating cancer per my oncologist is an art not a science. So I would guess that there are a few different approaches and if doable maybe a second opinion to see what other dr's might suggest
either way I did have the chemo 6 rounds as well as internal radiation
so far okay but going for my checkup in two weeks, so hoping still okay
Sharon
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Second Opiniondshapiro said:gfr
Sorry, GFR is for kidney function. Your kidney should function above a certain level or, a fully functioning kidney would be like 70 or above. My kidneys are in decline and have been but it is a slow decline. I have a real concern going that all the surgery, more specifically the anesthesia, from my last two back to back procedures may have already reduced my GFR and now with chemo starting I'm afraid I'll go right from chemo to dialisys when chemo is done.
Since my hysterectomy was on Nov 6th I'm not sure if the hospital will run blood work prior to my port placement since it is being done at the same hospital. Hope they do.
In truth, I'm beginning to question a few things about chemo. Like, my carcinosarcoma was staged 1A and was found inside a polyp inside the uterus which has been removed. Chemo is a preventative measure like chasing down one wayward cell out of the millions in my body. I am asking the question.......is this really needed at this time especially now that the CT came back clean? I know this is a **** of a cancer and that I am hugely lucky it was found so early. So, questioning the toll this will take on my body, mind, life, family and, well, you all know those questions. I also know that should the cancer come back within the next year hitting a different organ I won't be able to have the same chemo done but will have to move to a more toxic therapy. So, do I wait and see or do I just get this done and get on with life?
I know these are questions everyone here has asked themselves and I know I'm the only one who can answer these questions for me........But, really? So, that's my rant for today. Just another day in the cancer lane of life.
Thanks, All, for letting me get this out which I hope will help me with my decision. You guys are all GREAT!
Debbe
Debbe,
i post for my sister in law Kelly. She was diagnosed in 2012 in Southern California with uterine carcinosarcoma/MMMT, we went to Sloan Kettering for a second opinion and they asked for all the slides from the surgery to do their own pathology. They found cancer was in more lymph nodes than doctors in SC found. This cancer is definitely one worth getting second opinions on before making decisions.
Nicki
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Thank you, All,for yourTeamkelly said:Second Opinion
Debbe,
i post for my sister in law Kelly. She was diagnosed in 2012 in Southern California with uterine carcinosarcoma/MMMT, we went to Sloan Kettering for a second opinion and they asked for all the slides from the surgery to do their own pathology. They found cancer was in more lymph nodes than doctors in SC found. This cancer is definitely one worth getting second opinions on before making decisions.
Nicki
Thank you, All,for your information and advise. I am going to go ahead with the chemo as that was my initial gut feeling and chasing down that one cell with this type of cancer is for the best in the long run. Doctor has stated that because my stage was 1A and most likely still contained within the polyp inside the uterus adn that chemo will reduce my chances of recurrance from the current 20% to 10%. I'll take the reduction though I am not looking forward to it at all.
I'll keep posting as the treatments progress and maybe that will help the next person along as you have all helped me.
Debbie
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Debbie thanks for the info about GFRdshapiro said:Thank you, All,for your
Thank you, All,for your information and advise. I am going to go ahead with the chemo as that was my initial gut feeling and chasing down that one cell with this type of cancer is for the best in the long run. Doctor has stated that because my stage was 1A and most likely still contained within the polyp inside the uterus adn that chemo will reduce my chances of recurrance from the current 20% to 10%. I'll take the reduction though I am not looking forward to it at all.
I'll keep posting as the treatments progress and maybe that will help the next person along as you have all helped me.
Debbie
This just came up for the first time for me three weeks ago. I just went through the normal pre-treatment tests including urine on Friday, apparently this is a potential side effect of Avastin which I am currently being treated with. I will find out tomorrow if it is a one time thing or the beginning of a new trend for me. Hopefully it isn't! Hugs, Anne
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It begins...AWK said:Debbie thanks for the info about GFR
This just came up for the first time for me three weeks ago. I just went through the normal pre-treatment tests including urine on Friday, apparently this is a potential side effect of Avastin which I am currently being treated with. I will find out tomorrow if it is a one time thing or the beginning of a new trend for me. Hopefully it isn't! Hugs, Anne
Hey All,
I have my shiney new port installed and so far the labs don't want to use it and will keep poking my veins for blood work. That just leaves chemo and future CTs for this little needle bucket under the skin. The actually procedure went really well. The meds given for the procedure were pretty useless as I was wide awake thru the whole thing so thank goodness the tech had the guts to really numb everything up perfectly as I really didn't feel a thing unless he was pressing on the port to potition it and that was only pressure. No pain at all. However, aroung midnight when the numbing started to wear off...............oh boy! Made it thru that healing process without pain meds and only a bit of pulling and soreness now.
During my chemo training with the chemo nurses I finally blasted out about why the docs don't hand out xanex, at the very least, when patients have to start dealing with this beastie called cancer. Before I left chemo training I had my xanex script in hand and it has made a world of difference in my inner self. I can finally think about all this without the mental pain and stress which allows me to get a good night's sleep and allows me to get stuff done without that mental bog down.
My first chemo treatment is on Jan 7th. But, going to push that back to the deepest part of my brain until close to start time so I can enjoy the holidays with my family and friends.
I truly hope you are all going to have a great year with your families this year as well.
Debbie
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Glad to hear that you have your port, Debbiedshapiro said:It begins...
Hey All,
I have my shiney new port installed and so far the labs don't want to use it and will keep poking my veins for blood work. That just leaves chemo and future CTs for this little needle bucket under the skin. The actually procedure went really well. The meds given for the procedure were pretty useless as I was wide awake thru the whole thing so thank goodness the tech had the guts to really numb everything up perfectly as I really didn't feel a thing unless he was pressing on the port to potition it and that was only pressure. No pain at all. However, aroung midnight when the numbing started to wear off...............oh boy! Made it thru that healing process without pain meds and only a bit of pulling and soreness now.
During my chemo training with the chemo nurses I finally blasted out about why the docs don't hand out xanex, at the very least, when patients have to start dealing with this beastie called cancer. Before I left chemo training I had my xanex script in hand and it has made a world of difference in my inner self. I can finally think about all this without the mental pain and stress which allows me to get a good night's sleep and allows me to get stuff done without that mental bog down.
My first chemo treatment is on Jan 7th. But, going to push that back to the deepest part of my brain until close to start time so I can enjoy the holidays with my family and friends.
I truly hope you are all going to have a great year with your families this year as well.
Debbie
Hi, Debbie,
I am glad to hear that you have your port and that your surgery is behind you. I remember how painful it was afterwards for me, as though someone was trying to pull the muscles out of my chest. That, too, passed, thank goodness. When I had my first round of chemo, Carbo/Taxol, I wish the nurse told me in advance that I would probably need to use the bathroom due to so much fluid entering my body. I almost didn't make it to the toilet fast enough, what with the IV pole, bags, etc. that I had to drag into the tiny room with me! Rounds 2 through 6 didn't seem to have quite the same affect as that first round.
Have you made any plans for when you will lose your hair? I was able to pick up two wigs from the local American Cancer Society office. Have you been to the office nearest you? The ACS staff is wonderful and very supportive. I discovered an entire room filled to the brim with free wigs and wig products! It made the horror of losing my hair somewhat more tolerable. Two weeks after my first chemo, my thick shoulder length hair came out in clumps. I had it cut short so that the loss was not quite as noticeable. Some women shave their heads, but I didn't think that was a good idea for me. By the sixth chemo round, I was bald and was pretty much use to wearing my wigs by then. Losing my eyebrows and eyelashes was another crushing blow. That happened later in the chemo treatment process. Until that happened and my coloring became pasty, I thought that I could pass for "normal". I didn't want the world to look at me and see an ill woman! The last thing I wanted was to draw attention to myself and my sickly appearance. I admire those brave souls who don't care what others think and proudly display their bald heads.
I wish you only the best with treatment!
Cathy
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That is a great point aboutAbbycat2 said:Glad to hear that you have your port, Debbie
Hi, Debbie,
I am glad to hear that you have your port and that your surgery is behind you. I remember how painful it was afterwards for me, as though someone was trying to pull the muscles out of my chest. That, too, passed, thank goodness. When I had my first round of chemo, Carbo/Taxol, I wish the nurse told me in advance that I would probably need to use the bathroom due to so much fluid entering my body. I almost didn't make it to the toilet fast enough, what with the IV pole, bags, etc. that I had to drag into the tiny room with me! Rounds 2 through 6 didn't seem to have quite the same affect as that first round.
Have you made any plans for when you will lose your hair? I was able to pick up two wigs from the local American Cancer Society office. Have you been to the office nearest you? The ACS staff is wonderful and very supportive. I discovered an entire room filled to the brim with free wigs and wig products! It made the horror of losing my hair somewhat more tolerable. Two weeks after my first chemo, my thick shoulder length hair came out in clumps. I had it cut short so that the loss was not quite as noticeable. Some women shave their heads, but I didn't think that was a good idea for me. By the sixth chemo round, I was bald and was pretty much use to wearing my wigs by then. Losing my eyebrows and eyelashes was another crushing blow. That happened later in the chemo treatment process. Until that happened and my coloring became pasty, I thought that I could pass for "normal". I didn't want the world to look at me and see an ill woman! The last thing I wanted was to draw attention to myself and my sickly appearance. I admire those brave souls who don't care what others think and proudly display their bald heads.
I wish you only the best with treatment!
Cathy
That is a great point about chemo, Cathy!
My chemo nurse did advise that I wear a pad especially my first day because the bathroom urge can come on pretty fast and yes, you do have to drag the equipment in with you so that is super of you to bring that forward for everyone. It's the little things...ya know? lol.
Right now I'm trying to figure out how to draw eyebrows. I may be a very rare woman but I've never had to draw or add color or anything to my eyebrows. I can't find a stencil that mimics my natural eyebrows.
Debbie
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Debbiedshapiro said:That is a great point about
That is a great point about chemo, Cathy!
My chemo nurse did advise that I wear a pad especially my first day because the bathroom urge can come on pretty fast and yes, you do have to drag the equipment in with you so that is super of you to bring that forward for everyone. It's the little things...ya know? lol.
Right now I'm trying to figure out how to draw eyebrows. I may be a very rare woman but I've never had to draw or add color or anything to my eyebrows. I can't find a stencil that mimics my natural eyebrows.
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.
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Thanks, Ro,Ro10 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 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
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