Uterine Papillary Serous Carcinoma (UPSC): any others here???

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  • pjba11
    pjba11 Member Posts: 188
    welcome
    Wow... more of us again. This is so good for something so bad. Congrats on your NED! I am about a year ahead of you ?? (Nov 06 to March 07 in treatment) so I hope that gives you encouragement. I agree on your recommenation for emend. I had Taxol, Carboplactin, Aloxi, Dexomethasone, Compozine, Ativan, Emend, Benadryl, Zantac and Dexomemcjen. I think the aloxi dexomethasone was a betisec chemo IV. (thank God for Aloxi) I was scheduled for 6 chemo sessions but did 5 before blood clots ( 3 sessions chemo then external rad then 2 chemo then the brachy) Now I am an after effect mess, but I am alive and happy. Scared to death every 3 months to hear my results. I have spots in both lungs on my scans. But Drs are saying NED so far. I just got word today that my pap was negative and now the end of the month I scan and do CA125. What is your follow up and do you do CT or Pets ? We are all so hungry for what works to be NED!! God bless.... Hope you continue to stay on our thread and share with us!!
  • barb55
    barb55 Member Posts: 91
    pjba11 said:

    welcome
    Wow... more of us again. This is so good for something so bad. Congrats on your NED! I am about a year ahead of you ?? (Nov 06 to March 07 in treatment) so I hope that gives you encouragement. I agree on your recommenation for emend. I had Taxol, Carboplactin, Aloxi, Dexomethasone, Compozine, Ativan, Emend, Benadryl, Zantac and Dexomemcjen. I think the aloxi dexomethasone was a betisec chemo IV. (thank God for Aloxi) I was scheduled for 6 chemo sessions but did 5 before blood clots ( 3 sessions chemo then external rad then 2 chemo then the brachy) Now I am an after effect mess, but I am alive and happy. Scared to death every 3 months to hear my results. I have spots in both lungs on my scans. But Drs are saying NED so far. I just got word today that my pap was negative and now the end of the month I scan and do CA125. What is your follow up and do you do CT or Pets ? We are all so hungry for what works to be NED!! God bless.... Hope you continue to stay on our thread and share with us!!

    follow up
    Peggy (right?) I am glad you brought this up because I've been wondering about CAT/PET scans myself. Right now I see my oncologist every 3 months and noticed that I don't have another appointment till March which completely blew me away. I am so used to going to see doctors constantly. My radiologist sees me every 3 months as well. Not sure why so often, but I know he's very careful and I know he performed a lot more radiation than he usually does so I think he just checks in for any late after effects. I also checked in with my surgeon a year after the surgery partly to thank him, and partly to note the time passing. He told me to stop by as often as I want. I got the feeling he was very happy to see me- it hit me that we don't have time to give feedback (especially good feedback) to a lot of the people who are taking care of us- we are too overwhelmed physically and mentally so it isn't a priority. It was a gift to me as well as to him to have the chance to go back and let him see me healed. I haven't had a CAT scan since August and my doctors haven't recommended one for my next appointment in March. When I inquired about follow ups a while ago they told me they were comfortable with bloodwork and the CA125 as a good marker and physical examination every 3 months. If I had a specific physical complaint which I did once with stomach pain then they would schedule a CAT scan- which they did. I need to follow up on this question again. At the time, I got the feeling that they saw extra scans as unnecessary- maybe because I'd been through so much already, and it didn't provide that much information. I know the decision was not based on cost. When I am down I imagine that the decision may have something to do with catching my cancer so late but I'm still here and better everyday. I will ask about PET scans next appointment. I do know that PET scans are not effective for identifying all kinds of cancer- I need to look into it. Gotta go - phone call. Take care everyone!
  • barb55
    barb55 Member Posts: 91
    pjba11 said:

    welcome
    Wow... more of us again. This is so good for something so bad. Congrats on your NED! I am about a year ahead of you ?? (Nov 06 to March 07 in treatment) so I hope that gives you encouragement. I agree on your recommenation for emend. I had Taxol, Carboplactin, Aloxi, Dexomethasone, Compozine, Ativan, Emend, Benadryl, Zantac and Dexomemcjen. I think the aloxi dexomethasone was a betisec chemo IV. (thank God for Aloxi) I was scheduled for 6 chemo sessions but did 5 before blood clots ( 3 sessions chemo then external rad then 2 chemo then the brachy) Now I am an after effect mess, but I am alive and happy. Scared to death every 3 months to hear my results. I have spots in both lungs on my scans. But Drs are saying NED so far. I just got word today that my pap was negative and now the end of the month I scan and do CA125. What is your follow up and do you do CT or Pets ? We are all so hungry for what works to be NED!! God bless.... Hope you continue to stay on our thread and share with us!!

    follow up
    Peggy (right?) I am glad you brought this up because I've been wondering about CAT/PET scans myself. Right now I see my oncologist every 3 months and noticed that I don't have another appointment till March which completely blew me away. I am so used to going to see doctors constantly. My radiologist sees me every 3 months as well. Not sure why so often, but I know he's very careful and I know he performed a lot more radiation than he usually does so I think he just checks in for any late after effects. I also checked in with my surgeon a year after the surgery partly to thank him, and partly to note the time passing. He told me to stop by as often as I want. I got the feeling he was very happy to see me- it hit me that we don't have time to give feedback (especially good feedback) to a lot of the people who are taking care of us- we are too overwhelmed physically and mentally so it isn't a priority. It was a gift to me as well as to him to have the chance to go back and let him see me healed. I haven't had a CAT scan since August and my doctors haven't recommended one for my next appointment in March. When I inquired about follow ups a while ago they told me they were comfortable with bloodwork and the CA125 as a good marker and physical examination every 3 months. If I had a specific physical complaint which I did once with stomach pain then they would schedule a CAT scan- which they did. I need to follow up on this question again. At the time, I got the feeling that they saw extra scans as unnecessary- maybe because I'd been through so much already, and it didn't provide that much information. I know the decision was not based on cost. When I am down I imagine that the decision may have something to do with catching my cancer so late but I'm still here and better everyday. I will ask about PET scans next appointment. I do know that PET scans are not effective for identifying all kinds of cancer- I need to look into it. Gotta go - phone call. Take care everyone!
  • shortmarge
    shortmarge Member Posts: 291
    barb55 said:

    follow up
    Peggy (right?) I am glad you brought this up because I've been wondering about CAT/PET scans myself. Right now I see my oncologist every 3 months and noticed that I don't have another appointment till March which completely blew me away. I am so used to going to see doctors constantly. My radiologist sees me every 3 months as well. Not sure why so often, but I know he's very careful and I know he performed a lot more radiation than he usually does so I think he just checks in for any late after effects. I also checked in with my surgeon a year after the surgery partly to thank him, and partly to note the time passing. He told me to stop by as often as I want. I got the feeling he was very happy to see me- it hit me that we don't have time to give feedback (especially good feedback) to a lot of the people who are taking care of us- we are too overwhelmed physically and mentally so it isn't a priority. It was a gift to me as well as to him to have the chance to go back and let him see me healed. I haven't had a CAT scan since August and my doctors haven't recommended one for my next appointment in March. When I inquired about follow ups a while ago they told me they were comfortable with bloodwork and the CA125 as a good marker and physical examination every 3 months. If I had a specific physical complaint which I did once with stomach pain then they would schedule a CAT scan- which they did. I need to follow up on this question again. At the time, I got the feeling that they saw extra scans as unnecessary- maybe because I'd been through so much already, and it didn't provide that much information. I know the decision was not based on cost. When I am down I imagine that the decision may have something to do with catching my cancer so late but I'm still here and better everyday. I will ask about PET scans next appointment. I do know that PET scans are not effective for identifying all kinds of cancer- I need to look into it. Gotta go - phone call. Take care everyone!

    Welcome
    Welcome to all our new comers. Support is a wonderful thing, holding each others hands in cyberspace!!!

    I sit here tonight knowing that stopping the chemo treatment is the right thing to do. I am at peace with it. I am having more side effects then last time. Numb all over, not just my feet and hands but my face, tongue, legs. Having the off balance effect too but at least I haven't had the eye problems this time. My husband and daughter told me yesterday that for the first time through all of this I look sick. Silly, cancer free but I look like I have cancer.

    I've lost all of my eyebrows, so tonight my husband shaved the little stubble on top of my head. This is the new beginning, the start of new life!!!!

    Linda, I hope all goes well for you and you start your treatment back up on Monday but remember you need your strength also to help the fight. The discussion I had with the nurse was great. Talking about how chemo has become our security blanket, we feel safe on it. But we need to stay healthly too to fight the fight.

    Deanna, hope you are doing well with your first treatment.

    MIND, BODY AND SOUL.

    Hugs.....
  • deanna14
    deanna14 Member Posts: 732

    Welcome
    Welcome to all our new comers. Support is a wonderful thing, holding each others hands in cyberspace!!!

    I sit here tonight knowing that stopping the chemo treatment is the right thing to do. I am at peace with it. I am having more side effects then last time. Numb all over, not just my feet and hands but my face, tongue, legs. Having the off balance effect too but at least I haven't had the eye problems this time. My husband and daughter told me yesterday that for the first time through all of this I look sick. Silly, cancer free but I look like I have cancer.

    I've lost all of my eyebrows, so tonight my husband shaved the little stubble on top of my head. This is the new beginning, the start of new life!!!!

    Linda, I hope all goes well for you and you start your treatment back up on Monday but remember you need your strength also to help the fight. The discussion I had with the nurse was great. Talking about how chemo has become our security blanket, we feel safe on it. But we need to stay healthly too to fight the fight.

    Deanna, hope you are doing well with your first treatment.

    MIND, BODY AND SOUL.

    Hugs.....

    Hi Everyone!
    I've had a long few days after my first chemo treatment. I had port put in on Tuesday with chemo to follow. No problems with this and probably slept better than I had in a while when I got home.
    Wed. I went to have CT scan and they weren't able to access my port. Couldn't figure out why, so they put an IV in my right arm. When they did to big injection of the contrast, the IV infiltrated and contrast went into the tissue in my arm. They sent me to my follow up with radiation dr. and back to chemo for Neulasta injection, which I did. Then back to see the radiologist and when they measured my arm, it was getteing larger. So they sent me to the ER to be evaluated to see if I needede to see a plastic surgeon. We waited 5 1/2 hours in the waiting room, finally saw the ER doc who said my arm looked okay and to keep warm moist packs on it and if it got worse to come back.
    Anyway, my arm is better (thank God)! I had to go back to radiology today to have a port injection done. They think that the port is fine, that it is deep under the tissue. I think that was a nice way of saying I have a lot of tissue in that area! lol. Hopefully it will work for 5 more chemo treatments.
    I haven't had a lot of trouble, I just been very sleepy and achy. So I will give in and let my body rest for a few days. Then I'll have to get moving!
    Marge, I'm happy for you that you have found peace in you decision to stop with this treatment. I pray that you will remain NED forever.
    Linda, I pray that you will be strong enough and healthy enough to have your chemo on Monday.
    I am going to continue snoozing this chemo off. I think by tomorrow I will be feeling much better.
    Hugs to all,
    Deanna
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    deanna14 said:

    Hi Everyone!
    I've had a long few days after my first chemo treatment. I had port put in on Tuesday with chemo to follow. No problems with this and probably slept better than I had in a while when I got home.
    Wed. I went to have CT scan and they weren't able to access my port. Couldn't figure out why, so they put an IV in my right arm. When they did to big injection of the contrast, the IV infiltrated and contrast went into the tissue in my arm. They sent me to my follow up with radiation dr. and back to chemo for Neulasta injection, which I did. Then back to see the radiologist and when they measured my arm, it was getteing larger. So they sent me to the ER to be evaluated to see if I needede to see a plastic surgeon. We waited 5 1/2 hours in the waiting room, finally saw the ER doc who said my arm looked okay and to keep warm moist packs on it and if it got worse to come back.
    Anyway, my arm is better (thank God)! I had to go back to radiology today to have a port injection done. They think that the port is fine, that it is deep under the tissue. I think that was a nice way of saying I have a lot of tissue in that area! lol. Hopefully it will work for 5 more chemo treatments.
    I haven't had a lot of trouble, I just been very sleepy and achy. So I will give in and let my body rest for a few days. Then I'll have to get moving!
    Marge, I'm happy for you that you have found peace in you decision to stop with this treatment. I pray that you will remain NED forever.
    Linda, I pray that you will be strong enough and healthy enough to have your chemo on Monday.
    I am going to continue snoozing this chemo off. I think by tomorrow I will be feeling much better.
    Hugs to all,
    Deanna

    Deanna: arm still ok? Achy? Tomorrow's my CHEMO (I hope!)
    I tried replying to Deanna's post twice over the weekend, but mid-post I got booted out, probably because I had too many other things open on my desktop. (I was trying to make sure the info I was sharing was correct.) I don't want Deanna to think I wasn't concerned about how she's doing and about that swollen arm. That really sounds like the CT-tech went right through your vein, you poor thing. And, Marge, please let us know if that facial numbness went away yet; that doesn't sound like much fun either!

    I have been stressing that I didn't get a port, now that I've started to have more complicated chemos. With my platelets this low, I don't think they'd take the chance of inserting a port now. Now instead of the usual 2-sticks-per-chemo (blood work stick, then chemo IV); beside the CT-scan stick and bloodwork stick I had last week, tomorrow I may have to have a bloodwork stick, transfusion stick, 2nd bloodwork stick, and then finally chemo IV. That's a lot of needles for veins the CT-tech already said were showing a lot of scar tissue. Oh, well, one day at a time. I'm really worried about tomorrow and can't wait until I am through with whatever it takes to get Round 4 of my chemo into me. I'll post a report as soon as I feel up to it, but tomorrow will be a LOOOOONG day if I have to get a transfusion before my chemo.

    The info I wanted to post is a new disgnostic procedure that is really what we should ALL be fighting to get if any of us has to have any further surgery for cancer re-occurence (God Forbid!!). This new technique involves taking the LIVE tumor cells harvested from the surgery and TESTING them with various chemo drugs to see which chemo drugs work best SPECIFICALLY for your INDIVIDUAL cancer! That way they already know BEFORE you start chemo exactly what drugs are most apt to be effective in killing your specific uniquely individual cancer. Isn't that amazing?!

    The reason why this is so important to all of us is something that Peggy emailed to me from a very complicated medical report about endometrial adenocarcinomas (that's us, right?). It said: "In the serous papillary and clear cell category, EGFR positivity decreased survival from 86 to 27%. EGFR strongly correlates with tumor metastasis and patient survival in endometrial cancer. Altered expression of this oncoprotein may serve as a guide to prognosis and treatment in these patients." and "Seventy-seven percent of patients with metastatic disease were EGFR-positive versus 36% positivity in patients with no evidence of metastases."

    This scary EGFR "epidermal growth factor receptor" is a protein on the cancer cell that causes it to reproduce and grow at a CRAZY-fast rate, and unless someone tests the live tumor cells with the chemo drugs that are so effective on EGFR, they don't know who has it and who doesn't. That's why it's so deadly, because EGFR goes untreated during chemo even though there are several very effective chemo drugs being used for other cancers that do a really effective job of suppressing EGFR, and that give the taxol/platin chemo drugs time to kill the cancer cells with EGFR before they reproduce too quickly to be dealt with. I'm not explaining it as well as I should, but if you are interested, you can put "EGFR" in the SEARCH box at the top of this page and there has been a LOT of discussion about this on other Discussion Boards here, and a lot of information about the various drugs that have worked so well to address this for people with other cancers. I know I would be afraid to learn that my survival rate had dropped from 86% to 27%, but I would be glad to know that I could still save myself by taking the newer EGFR-suppressing drugs. And that's why knowledge is power in this battle. I don't know that there is any other way to test for it except with live tumor cancer cells at the time of surgery, which is why it isn't commonly done, I'm guessing. But it seems important for women with UPSC to know, since there are drugs that really negate the power of it, and if our cancer cells have this EGFR mutation, we want those drugs!
  • deanna14
    deanna14 Member Posts: 732

    Deanna: arm still ok? Achy? Tomorrow's my CHEMO (I hope!)
    I tried replying to Deanna's post twice over the weekend, but mid-post I got booted out, probably because I had too many other things open on my desktop. (I was trying to make sure the info I was sharing was correct.) I don't want Deanna to think I wasn't concerned about how she's doing and about that swollen arm. That really sounds like the CT-tech went right through your vein, you poor thing. And, Marge, please let us know if that facial numbness went away yet; that doesn't sound like much fun either!

    I have been stressing that I didn't get a port, now that I've started to have more complicated chemos. With my platelets this low, I don't think they'd take the chance of inserting a port now. Now instead of the usual 2-sticks-per-chemo (blood work stick, then chemo IV); beside the CT-scan stick and bloodwork stick I had last week, tomorrow I may have to have a bloodwork stick, transfusion stick, 2nd bloodwork stick, and then finally chemo IV. That's a lot of needles for veins the CT-tech already said were showing a lot of scar tissue. Oh, well, one day at a time. I'm really worried about tomorrow and can't wait until I am through with whatever it takes to get Round 4 of my chemo into me. I'll post a report as soon as I feel up to it, but tomorrow will be a LOOOOONG day if I have to get a transfusion before my chemo.

    The info I wanted to post is a new disgnostic procedure that is really what we should ALL be fighting to get if any of us has to have any further surgery for cancer re-occurence (God Forbid!!). This new technique involves taking the LIVE tumor cells harvested from the surgery and TESTING them with various chemo drugs to see which chemo drugs work best SPECIFICALLY for your INDIVIDUAL cancer! That way they already know BEFORE you start chemo exactly what drugs are most apt to be effective in killing your specific uniquely individual cancer. Isn't that amazing?!

    The reason why this is so important to all of us is something that Peggy emailed to me from a very complicated medical report about endometrial adenocarcinomas (that's us, right?). It said: "In the serous papillary and clear cell category, EGFR positivity decreased survival from 86 to 27%. EGFR strongly correlates with tumor metastasis and patient survival in endometrial cancer. Altered expression of this oncoprotein may serve as a guide to prognosis and treatment in these patients." and "Seventy-seven percent of patients with metastatic disease were EGFR-positive versus 36% positivity in patients with no evidence of metastases."

    This scary EGFR "epidermal growth factor receptor" is a protein on the cancer cell that causes it to reproduce and grow at a CRAZY-fast rate, and unless someone tests the live tumor cells with the chemo drugs that are so effective on EGFR, they don't know who has it and who doesn't. That's why it's so deadly, because EGFR goes untreated during chemo even though there are several very effective chemo drugs being used for other cancers that do a really effective job of suppressing EGFR, and that give the taxol/platin chemo drugs time to kill the cancer cells with EGFR before they reproduce too quickly to be dealt with. I'm not explaining it as well as I should, but if you are interested, you can put "EGFR" in the SEARCH box at the top of this page and there has been a LOT of discussion about this on other Discussion Boards here, and a lot of information about the various drugs that have worked so well to address this for people with other cancers. I know I would be afraid to learn that my survival rate had dropped from 86% to 27%, but I would be glad to know that I could still save myself by taking the newer EGFR-suppressing drugs. And that's why knowledge is power in this battle. I don't know that there is any other way to test for it except with live tumor cancer cells at the time of surgery, which is why it isn't commonly done, I'm guessing. But it seems important for women with UPSC to know, since there are drugs that really negate the power of it, and if our cancer cells have this EGFR mutation, we want those drugs!

    Tumor testing.
    Linda,
    They have done some genetic testing on the tumor tissue that they removed from me at the time of surgery. I was of the understanding that this tissue is stored for a period of time in the event that further genetic testing is deemed necessary when evaluated by the genetic counselor. I am going to check into this and I think that we all should. It has not been all that long since you and Marge had your surgeries either. I am wondering if it common practice to store the tissue or if that was done in my case due to the concern of Lynch Syndrome. Or perhaps I am mistaken and the tissue was not kept, either way, it is worth asking about.
    Thanks for that excellent information. I am of the opinion that this testing should be routinely done when one is found to have cancer! That is huge for battling particularly our aggressive cell type!
    By the way, my arm is bruised, but back to normal in terms of size. It was very swollen. I had a port injection done under flouroscopy on Friday and the port worked fine. They had to use a longer needle as I am blessed with plenty of tissue in that area. I am praying that it will work for my next chemo on the 9th.
    I had a couple of rough days with aching and being very tired, but am feeling much better now. I started taking the Compazine they prescribed on the evening of day 2 in anticipation of the Aloxi wearing off. I also took benadryl for a couple of days for the flushing as I have had a lot of hot flashes anyway. I think it helped to keep me relaxed and resting better.
    Marge, I hope that this finds you feeling better. As always, you have been in my thoughts and prayers. Thank God that you are finished and can start anew and begin to increase your strength and build up your health!
    Linda, I pray for peace for you to rest tonight and that you will be strong enough to receive your 4th chemo treatment tomorrow. Hopefully, your counts are back up and you won't need blood and your day will not be as long as you had anticipated.
    I am going to the Look Good, Feel Better seminar tomorrow. I'm kind of excited about it. My SIL is going with me. It should be a fun day out for the girls!
    God Bless all. Take care and be strong....
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    deanna14 said:

    Tumor testing.
    Linda,
    They have done some genetic testing on the tumor tissue that they removed from me at the time of surgery. I was of the understanding that this tissue is stored for a period of time in the event that further genetic testing is deemed necessary when evaluated by the genetic counselor. I am going to check into this and I think that we all should. It has not been all that long since you and Marge had your surgeries either. I am wondering if it common practice to store the tissue or if that was done in my case due to the concern of Lynch Syndrome. Or perhaps I am mistaken and the tissue was not kept, either way, it is worth asking about.
    Thanks for that excellent information. I am of the opinion that this testing should be routinely done when one is found to have cancer! That is huge for battling particularly our aggressive cell type!
    By the way, my arm is bruised, but back to normal in terms of size. It was very swollen. I had a port injection done under flouroscopy on Friday and the port worked fine. They had to use a longer needle as I am blessed with plenty of tissue in that area. I am praying that it will work for my next chemo on the 9th.
    I had a couple of rough days with aching and being very tired, but am feeling much better now. I started taking the Compazine they prescribed on the evening of day 2 in anticipation of the Aloxi wearing off. I also took benadryl for a couple of days for the flushing as I have had a lot of hot flashes anyway. I think it helped to keep me relaxed and resting better.
    Marge, I hope that this finds you feeling better. As always, you have been in my thoughts and prayers. Thank God that you are finished and can start anew and begin to increase your strength and build up your health!
    Linda, I pray for peace for you to rest tonight and that you will be strong enough to receive your 4th chemo treatment tomorrow. Hopefully, your counts are back up and you won't need blood and your day will not be as long as you had anticipated.
    I am going to the Look Good, Feel Better seminar tomorrow. I'm kind of excited about it. My SIL is going with me. It should be a fun day out for the girls!
    God Bless all. Take care and be strong....

    more on tumor testing: then OFF TO CHEMO (hope hope)
    I have to head out, but wanted to pull this added info for you (and print it out to discuss with my oncologist today!) This is from another post on this same website we are on, really good stuff!:

    Findings presented at the 41st Annual Meeting of the European Society for Clinical Investigation in Uppsala, Sweden, April 18, 2007, concluded that "functional profiling" with cell culture assays is relevant for the study of both "conventional" and "targeted" anti-neoplastic drug agents (anti-tumor and anti-angiogenic activity of Iressa, Tarceva, Sutent, Nexavar, and Avastin in primary cultures of "fresh" human tumors).
    Cell Culture Assays with "cell-death" endpoints can show disease-specific drug activity, are useful clinical and research tools for "conventional" and "targeted" drugs, and provide unique information complementary to that provided by "molecular" tests. There have been more than 25 peer-reviewed publications showing significant correlations between cell-death assay results and patient response and survival.

    Many patients are treated not only with a "targeted" therapy drug like Tarceva, Avastin, or Iressa, but with a combination of chemotherapy drugs. Therefore, existing DNA or RNA sequences or expression of individual proteins often examine only one component of a much larger, interactive process. The oncologist might need to administer several chemotherapy drugs at varying doses because tumor cells express survival factors with a wide degree of individual cell variability.

    There is a tactic of using biopsied cells to predict which cancer treatments will work best for the patient, by taking pieces of live "fresh" tumor tissue, applying different chemotherapy treatments to it, and examining the results to see which drug or combination of drugs does the best job killing the tumor cells. A cell culture assay test with "functional profiling," using a cell-death endpoint, can help see what treatments will not have the best opportunity of being successful (resistant) and identify drugs that have the best opportunity of being successful (sensitive).

    "Functional profiling" measures the response of the tumor cells to drug exposure. Following this exposure, they measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome. No matter which genes are being affected, "functional profiling" is measuring them through the surrogate of measuring if the cell is alive or dead.
    For example, the epidermal growth factor receptor (EGFR) is a protein on the surface of a cell. EGFR-inhibiting drugs certainly do target specific genes, but even knowing what genes the drugs target doesn't tell you the whole story. Both Iressa and Tarceva target EGFR protein-tyrosine kinases. But all the EGFR mutation or amplificaton studies can tell us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if Iressa is better or worse than Tarceva or other drugs which may target this. There are differences. The drugs have to get inside the cells in order to target anything. So, in different tumors, either Iressa or Tarceva might get in better or worse than the other. And the drugs may also be inactivated at different rates, also contributing to sensitivity versus resistance.

    As an example of this testing, researchers have tested how well a pancreatic cancer patient can be treated successfully with a combination of drugs commonly used to fight lung, pancreatic, breast, and colorectal cancers. The pre-test can report prospectively to a physician specifically which chemotherapy agent would benefit a cancer patient. Drug sensitivity profiles differ significantly among cancer patients even when diagnosed with the same cancer.

    The "functional profiling" technique makes the statistically significant association between prospectively reported test results and patient survival. It can correlate test results that are obtained in the lab and reported to physicians prior to patient treatment, with significantly longer or shorter overall patient survival depending upon whether the drug was found to be effective or ineffective at killing the patient's tumor cells in the laboratory.
    This could help solve the problem of knowing which patients can tolerate costly new treatments and their harmful side effects. These "smart" drugs are a really exciting element of cancer medicine, but do not work for everyone, and a test to determine the efficacy of these drugs in a patient could be the first crucial step in personalizing treatment to the individual.

    Author/Speaker/Performer :Larry Weisenthal, M.D., Ph.D.;
    Contact information: phone: (714) 596-2100.
    Link: http://weisenthal.org/Weisenthal_ESCIa.pdf Source : Eur J Clin Invest 37 (suppl. 1):60, 2007
  • deanna14
    deanna14 Member Posts: 732

    more on tumor testing: then OFF TO CHEMO (hope hope)
    I have to head out, but wanted to pull this added info for you (and print it out to discuss with my oncologist today!) This is from another post on this same website we are on, really good stuff!:

    Findings presented at the 41st Annual Meeting of the European Society for Clinical Investigation in Uppsala, Sweden, April 18, 2007, concluded that "functional profiling" with cell culture assays is relevant for the study of both "conventional" and "targeted" anti-neoplastic drug agents (anti-tumor and anti-angiogenic activity of Iressa, Tarceva, Sutent, Nexavar, and Avastin in primary cultures of "fresh" human tumors).
    Cell Culture Assays with "cell-death" endpoints can show disease-specific drug activity, are useful clinical and research tools for "conventional" and "targeted" drugs, and provide unique information complementary to that provided by "molecular" tests. There have been more than 25 peer-reviewed publications showing significant correlations between cell-death assay results and patient response and survival.

    Many patients are treated not only with a "targeted" therapy drug like Tarceva, Avastin, or Iressa, but with a combination of chemotherapy drugs. Therefore, existing DNA or RNA sequences or expression of individual proteins often examine only one component of a much larger, interactive process. The oncologist might need to administer several chemotherapy drugs at varying doses because tumor cells express survival factors with a wide degree of individual cell variability.

    There is a tactic of using biopsied cells to predict which cancer treatments will work best for the patient, by taking pieces of live "fresh" tumor tissue, applying different chemotherapy treatments to it, and examining the results to see which drug or combination of drugs does the best job killing the tumor cells. A cell culture assay test with "functional profiling," using a cell-death endpoint, can help see what treatments will not have the best opportunity of being successful (resistant) and identify drugs that have the best opportunity of being successful (sensitive).

    "Functional profiling" measures the response of the tumor cells to drug exposure. Following this exposure, they measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome. No matter which genes are being affected, "functional profiling" is measuring them through the surrogate of measuring if the cell is alive or dead.
    For example, the epidermal growth factor receptor (EGFR) is a protein on the surface of a cell. EGFR-inhibiting drugs certainly do target specific genes, but even knowing what genes the drugs target doesn't tell you the whole story. Both Iressa and Tarceva target EGFR protein-tyrosine kinases. But all the EGFR mutation or amplificaton studies can tell us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if Iressa is better or worse than Tarceva or other drugs which may target this. There are differences. The drugs have to get inside the cells in order to target anything. So, in different tumors, either Iressa or Tarceva might get in better or worse than the other. And the drugs may also be inactivated at different rates, also contributing to sensitivity versus resistance.

    As an example of this testing, researchers have tested how well a pancreatic cancer patient can be treated successfully with a combination of drugs commonly used to fight lung, pancreatic, breast, and colorectal cancers. The pre-test can report prospectively to a physician specifically which chemotherapy agent would benefit a cancer patient. Drug sensitivity profiles differ significantly among cancer patients even when diagnosed with the same cancer.

    The "functional profiling" technique makes the statistically significant association between prospectively reported test results and patient survival. It can correlate test results that are obtained in the lab and reported to physicians prior to patient treatment, with significantly longer or shorter overall patient survival depending upon whether the drug was found to be effective or ineffective at killing the patient's tumor cells in the laboratory.
    This could help solve the problem of knowing which patients can tolerate costly new treatments and their harmful side effects. These "smart" drugs are a really exciting element of cancer medicine, but do not work for everyone, and a test to determine the efficacy of these drugs in a patient could be the first crucial step in personalizing treatment to the individual.

    Author/Speaker/Performer :Larry Weisenthal, M.D., Ph.D.;
    Contact information: phone: (714) 596-2100.
    Link: http://weisenthal.org/Weisenthal_ESCIa.pdf Source : Eur J Clin Invest 37 (suppl. 1):60, 2007

    A Wish for Luck....
    Good luck, I hope and pray you get your treatment today!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    deanna14 said:

    A Wish for Luck....
    Good luck, I hope and pray you get your treatment today!

    Had my chemo, with transfusion planned for NEXT Monday
    I was able to have my chemo today! It was conditionally approved, as long as I agreed to come back next Monday, have another blood test, and am prepared to have a blood transfusion unless my hemoglobin (red counts) miraculously go UP after the chemo instead of further DOWN, which is the expected result. But for today’s blood work, the extra week’s delay allowed my platelet count to triple to well within the safe range. My red count only went up from 9.6 to 9.7, ALMOST to the safe threshold number of 10, and good enough for him to make an exception, with the transfusion next week. All I have to do is be careful not to faint and I can’t drive all week. I just have to get up slowly from the couch or out of bed; keep my head above my heart when I bend over; and not take any long hot baths or showers. And I’ll hold the rail and stop when I go up and down steps if I feel whoosy. I’ll be fine. So I have 4 of my total scheduled 6 chemo rounds in me, and a plan for the getting the last 2. They had to make 3 tries before they could get the intravenous in me for the chemo, as my veins are getting all scarred and hard from the earlier chemo. Surely I have 2 more good veins left and won't have to get a port just for those 2, although the poor girl poking me with the needles said she wished I would! So I am fine and very happy tonight, glad to be one step closer to this ordeal being over.

    I asked Dr. White about all the research I did, and he said that it will be many years before that type of testing is done in this country. He told me that he thought I should take a break from internet research. THAT isn't likely! And if I have any kind of recurrance that involves surgery, this WILL come up again, but next time with my gyn-onc surgeon. So don't be surprised if your oncologists aren't receptive to this idea initially.

    It was like a reunion today, with 3 of my "every Monday" chemo buddies all in for treatments, and that always makes the time go by faster. Now I need to email my family and friends that I promised to report to. I am exhausted, but may not be able to sleep tonight again, and "hampster days are here AGAIN" (so soon!) with the steroids jazzing me up.
  • deanna14
    deanna14 Member Posts: 732

    Had my chemo, with transfusion planned for NEXT Monday
    I was able to have my chemo today! It was conditionally approved, as long as I agreed to come back next Monday, have another blood test, and am prepared to have a blood transfusion unless my hemoglobin (red counts) miraculously go UP after the chemo instead of further DOWN, which is the expected result. But for today’s blood work, the extra week’s delay allowed my platelet count to triple to well within the safe range. My red count only went up from 9.6 to 9.7, ALMOST to the safe threshold number of 10, and good enough for him to make an exception, with the transfusion next week. All I have to do is be careful not to faint and I can’t drive all week. I just have to get up slowly from the couch or out of bed; keep my head above my heart when I bend over; and not take any long hot baths or showers. And I’ll hold the rail and stop when I go up and down steps if I feel whoosy. I’ll be fine. So I have 4 of my total scheduled 6 chemo rounds in me, and a plan for the getting the last 2. They had to make 3 tries before they could get the intravenous in me for the chemo, as my veins are getting all scarred and hard from the earlier chemo. Surely I have 2 more good veins left and won't have to get a port just for those 2, although the poor girl poking me with the needles said she wished I would! So I am fine and very happy tonight, glad to be one step closer to this ordeal being over.

    I asked Dr. White about all the research I did, and he said that it will be many years before that type of testing is done in this country. He told me that he thought I should take a break from internet research. THAT isn't likely! And if I have any kind of recurrance that involves surgery, this WILL come up again, but next time with my gyn-onc surgeon. So don't be surprised if your oncologists aren't receptive to this idea initially.

    It was like a reunion today, with 3 of my "every Monday" chemo buddies all in for treatments, and that always makes the time go by faster. Now I need to email my family and friends that I promised to report to. I am exhausted, but may not be able to sleep tonight again, and "hampster days are here AGAIN" (so soon!) with the steroids jazzing me up.

    Yeah!
    I'm glad you got to have your chemo today. The transfusion won't be so bad. I will keep praying that your body will allow you to receive all of your treatments and that your veins will hold out.
    You rest now and take especially good care of yourself. We'll cross the bridge of getting testing IF we come to it. I hope and pray that none of us will ever have to worry about these things again.
    I went to Look Good Feel Better today. I took my SIL with me and we had a great time. Such a sweet group of ladies. Lots of free make up, advice and met the hairdresser that does wig trims and chemo cuts for free. I'm excited about that. She also makes herself available on a volunteer basis for make up help. Like learning to draw on eyebrows when they come out. It was a fun girls days out!
    Every body take care.
    Hugs around. Be Strong.
    Deanna
  • shortmarge
    shortmarge Member Posts: 291
    deanna14 said:

    Yeah!
    I'm glad you got to have your chemo today. The transfusion won't be so bad. I will keep praying that your body will allow you to receive all of your treatments and that your veins will hold out.
    You rest now and take especially good care of yourself. We'll cross the bridge of getting testing IF we come to it. I hope and pray that none of us will ever have to worry about these things again.
    I went to Look Good Feel Better today. I took my SIL with me and we had a great time. Such a sweet group of ladies. Lots of free make up, advice and met the hairdresser that does wig trims and chemo cuts for free. I'm excited about that. She also makes herself available on a volunteer basis for make up help. Like learning to draw on eyebrows when they come out. It was a fun girls days out!
    Every body take care.
    Hugs around. Be Strong.
    Deanna

    Glad To Hear
    Linda, glad to hear you have four down and two to go. Now you need to get yourself some funny movies, a comfy blanket and rest up. I bearly got out of my jammies last week, took it real easy, the whoozie head is crazy. I'm feeling much better this week, still get a little off balance when I'm tired but the numbness in my face and everywhere but my feet is starting to go away. My husband is sick so I'm trying to avoid him as much as possible (so far so good). My DIL came over and showed me how to draw on eyebrows, not so hard except my eye hand coordination is going due to age. Question, does the inside of your nose really hurt? Mine is sooooooo dry it's painful. I sleep with a humidifier and that seems to help but sometimes it hurts so bad it brings tears to my eyes.

    Deanna, glad you had a great time at the Look Good Feel Better. Pray you are holding up well with your first chemo treatment. I pray for everyone everyday.

    MIND, BODY AND SOUL!


    Hugs
  • deanna14
    deanna14 Member Posts: 732

    Glad To Hear
    Linda, glad to hear you have four down and two to go. Now you need to get yourself some funny movies, a comfy blanket and rest up. I bearly got out of my jammies last week, took it real easy, the whoozie head is crazy. I'm feeling much better this week, still get a little off balance when I'm tired but the numbness in my face and everywhere but my feet is starting to go away. My husband is sick so I'm trying to avoid him as much as possible (so far so good). My DIL came over and showed me how to draw on eyebrows, not so hard except my eye hand coordination is going due to age. Question, does the inside of your nose really hurt? Mine is sooooooo dry it's painful. I sleep with a humidifier and that seems to help but sometimes it hurts so bad it brings tears to my eyes.

    Deanna, glad you had a great time at the Look Good Feel Better. Pray you are holding up well with your first chemo treatment. I pray for everyone everyday.

    MIND, BODY AND SOUL!


    Hugs

    Nose
    Marge, I have been having sores in my nose. I guess the combo of the cold dry weather and chemo. My doc told me to put a little antibiotic ointment in my nose a couple of times a day and it seems to be helping. I got a tube of the antibiotic with a topical pain killer in it.
    Also, at the Look Good Feel Better, the beautician who put it on show us how she puts her eyebrows on. She went to one of the public beauty supply stores and bought and eyebrow brush, eyebrow powder and there are stencils you can buy. I haven't been to check it out yet, but she said they come in different sizes and shapes, so you can pick one that works for you. I think I am going to look for them, I'm not great with makeup so I think they will help. I am glad to hear that most of your side effects are starting to subside.
    Linda, I hope you are feeling okay post chemo. Take care of yourself and stay warm. We have a lot of ice and it is really cold. I am just staying in...nadir starts today. I got some masks and hand sanitizer to keep around in case anyone visits with a bug. Everyone is being pretty conscientious so far.
    Love and prayers to all!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    deanna14 said:

    Nose
    Marge, I have been having sores in my nose. I guess the combo of the cold dry weather and chemo. My doc told me to put a little antibiotic ointment in my nose a couple of times a day and it seems to be helping. I got a tube of the antibiotic with a topical pain killer in it.
    Also, at the Look Good Feel Better, the beautician who put it on show us how she puts her eyebrows on. She went to one of the public beauty supply stores and bought and eyebrow brush, eyebrow powder and there are stencils you can buy. I haven't been to check it out yet, but she said they come in different sizes and shapes, so you can pick one that works for you. I think I am going to look for them, I'm not great with makeup so I think they will help. I am glad to hear that most of your side effects are starting to subside.
    Linda, I hope you are feeling okay post chemo. Take care of yourself and stay warm. We have a lot of ice and it is really cold. I am just staying in...nadir starts today. I got some masks and hand sanitizer to keep around in case anyone visits with a bug. Everyone is being pretty conscientious so far.
    Love and prayers to all!

    I have added constipation to my woes this week.
    This probably falls under the "too much information" category, and I apologize for such a gross topic of conversation. I guess taking all the steroids last week for the chemo I DID'NT get, and then following that up 6 days later with a pile of steroids for the postponed chemo,...plus the iron pills I'm taking for my low red counts,..got me so constipated that I was getting worried. I took a stool softener the first couple of nights, then a couple of Ducolax when that didn't work. Then, this morning, when I thought I would have to go in there with dynamite or a jack-hammer, I decided to treat myself to the humiliation of a self-inflicted enema, just to give myself some relief. UGH! GROSS! I have NEVER done that before and actually read a "how to give yourself an enema" tutorial online before I tried it. I hope this isn't going to plague me for the rest of my chemos. I enjoyed pretty normal eating, sleeping, and bowel function for the first 3 rounds of chemo. I'm careful to eat a lot of fiber and drink prune juice every day. Do any of you get constipated from your chemo? I know constipation can sometimes be a kind of internal neuropathy thing, but I really think this is related to my blood-count problems. They did a detailed blood analysis in preparation for my transfusion next Monday, and my sugar was sky-high, which I was told was a steroids side effect. I am going to see if I can get my bloodwork done the day BEFORE my remaining 2 chemo rounds, so that I won't be taking the 'night before / morning of' steroids unnecessarily if my chemo has to be delayed again. This doubling up of steroids is bad. Forgive me for sharing this gross tidbit.

    About the nose sores, I had that a little when the nose hairs started falling out, but then it never re-occured. So hopefully it will quickly go away for you both. (Now, with no nose hairs, my nose drips when I go from inside to outside, or vice versa.) I use Mary Kay's moisturizer (the one that looks like pink Vaseline) around my eyes every night, and I would just smear some of that around my nostrils before bed and that really helped a lot. You may want to try Vaseline to keep the skin and membranes protected.

    So glad the "Look Good/Feel Better" was fun! I'm getting pretty good at drawing on the eyebrows. The trick is to use a LIGHT eyebrow color (like for blonds) and put it on in small strokes. I run my finger along my brow-bone before I start, and feather in that top line first. Then I just thicken it up a little towards the center edges. My drawn-on eyebrows are thinner and lighter than my natural brows, but they don't look too fake. You really have to be GOOD to use a darker pencil, and I know my limitations.

    I haven't been faint at all, even with these low red-counts, so far. It's only 2 days past chemo, and my counts may not have dropped as far as they will yet from this last round, so the faintness may still occur. But so far, so good. And Monday I'll get my transfusion to get me through next week safely.

    Marge, I am so glad that numbness is going away. I was worried about that. Still some UPSC Sisters among the missing this week. I hope the others pop in and let us know they're doing okay. I notice I haven't been getting the automated emails that there are new posts. Anyone else not getting those? How do I turn them back on?
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    Teresa 61 said:

    Welcome Kris Ann...
    Welcome Kris Ann. Sorry to hear your mom is in this boat with the rest of us, but happy you found this site. It does feel better to know your not alone in this.
    Deanna, hope your 1st chemo went well for you. On my 1st round as soon as I got to the check-in counter I started crying and kept it up for about an hour.(I mean big tears, I was a mess) They gave me Lorazapam and Benadryl and I slept for 4 hours and was still groggy when I got home. Anyway your 1st round is over with and I'm glad for you.
    Linda, sorry to hear about your week delay. My sister-in-law said that happened to her daughter last year when she was going through chemo. But I know how you feel, I just want this all over with too.Congratulations on your CT scan!!!!. I went to a Look Good... Feel Better last week. I don't want to sound like a complainer, but I'm sure it wasn't as nice as the one you went to. Plus the woman sitting across from me had a bad cold.She said she asked and they told her it would be alright if she attended. I was not happy about that.
    Marge, hope your doing well after your chemo. Sorry about the Eagles. I had my head shaved today. Couldn't take it anymore, there's hair all over the place. I was like a shedding shaggy dog. Thought I would cry when she started shaving, but was surprised I didn't, think I was just relieved to get it over with.
    Peggy, your moral support is so wonderful. Makes me feel that "I WILL" get through this...

    Look Good... Feel Better
    Tried to edit my comment on the Look Good... Feel Better but for some reason the edit is not working. I re read what I wrote and felt bad . The girl was really very nice and gave us alot of useful information at the program. And I got alot of great make-up. It really is a wonderful thing that they do just for us. Think I was more upset with the woman with the cold. I didn't get sick so guess I should just get over it.....
  • deanna14
    deanna14 Member Posts: 732

    I have added constipation to my woes this week.
    This probably falls under the "too much information" category, and I apologize for such a gross topic of conversation. I guess taking all the steroids last week for the chemo I DID'NT get, and then following that up 6 days later with a pile of steroids for the postponed chemo,...plus the iron pills I'm taking for my low red counts,..got me so constipated that I was getting worried. I took a stool softener the first couple of nights, then a couple of Ducolax when that didn't work. Then, this morning, when I thought I would have to go in there with dynamite or a jack-hammer, I decided to treat myself to the humiliation of a self-inflicted enema, just to give myself some relief. UGH! GROSS! I have NEVER done that before and actually read a "how to give yourself an enema" tutorial online before I tried it. I hope this isn't going to plague me for the rest of my chemos. I enjoyed pretty normal eating, sleeping, and bowel function for the first 3 rounds of chemo. I'm careful to eat a lot of fiber and drink prune juice every day. Do any of you get constipated from your chemo? I know constipation can sometimes be a kind of internal neuropathy thing, but I really think this is related to my blood-count problems. They did a detailed blood analysis in preparation for my transfusion next Monday, and my sugar was sky-high, which I was told was a steroids side effect. I am going to see if I can get my bloodwork done the day BEFORE my remaining 2 chemo rounds, so that I won't be taking the 'night before / morning of' steroids unnecessarily if my chemo has to be delayed again. This doubling up of steroids is bad. Forgive me for sharing this gross tidbit.

    About the nose sores, I had that a little when the nose hairs started falling out, but then it never re-occured. So hopefully it will quickly go away for you both. (Now, with no nose hairs, my nose drips when I go from inside to outside, or vice versa.) I use Mary Kay's moisturizer (the one that looks like pink Vaseline) around my eyes every night, and I would just smear some of that around my nostrils before bed and that really helped a lot. You may want to try Vaseline to keep the skin and membranes protected.

    So glad the "Look Good/Feel Better" was fun! I'm getting pretty good at drawing on the eyebrows. The trick is to use a LIGHT eyebrow color (like for blonds) and put it on in small strokes. I run my finger along my brow-bone before I start, and feather in that top line first. Then I just thicken it up a little towards the center edges. My drawn-on eyebrows are thinner and lighter than my natural brows, but they don't look too fake. You really have to be GOOD to use a darker pencil, and I know my limitations.

    I haven't been faint at all, even with these low red-counts, so far. It's only 2 days past chemo, and my counts may not have dropped as far as they will yet from this last round, so the faintness may still occur. But so far, so good. And Monday I'll get my transfusion to get me through next week safely.

    Marge, I am so glad that numbness is going away. I was worried about that. Still some UPSC Sisters among the missing this week. I hope the others pop in and let us know they're doing okay. I notice I haven't been getting the automated emails that there are new posts. Anyone else not getting those? How do I turn them back on?

    What a miserable side effect.
    I had to bump up the fiber intake and it is helping me with the constipation, but giving me what we refer to as "man-gas", long and loud. I remember my brother talking about the chemo gas, so it make be a combo of the chemo and the increased fiber intake.
    I am having this odd tingling sensation in my lips and tongue. I woke up with a cold sore at the corner of my mouth the day after chemo and have never had one before. Now this fleeting moment of tingly lips and tongue? Does this ring a bell with anyone. I was just going to ask about it at next appt. I will be curious to see what my counts are after the first round of chemo. I think I look very pale and my gums and mucous membranes look very pale. Any suggestions besides liver on what I should be eating?
    That class was really fun, it was so fun going through all of the free bees. I am going to find myself some of those eyebrow stencils b/c I am having difficulty with free handing the eye brows. I look like a clown, so my next trip to town, I am getting some stencils.
    I never have gotten email notification of posts, but I would like to know how to turn it on also, if you find out let me know.
    Do any of you know anything about Cancer Treatment Centers of America?
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    deanna14 said:

    What a miserable side effect.
    I had to bump up the fiber intake and it is helping me with the constipation, but giving me what we refer to as "man-gas", long and loud. I remember my brother talking about the chemo gas, so it make be a combo of the chemo and the increased fiber intake.
    I am having this odd tingling sensation in my lips and tongue. I woke up with a cold sore at the corner of my mouth the day after chemo and have never had one before. Now this fleeting moment of tingly lips and tongue? Does this ring a bell with anyone. I was just going to ask about it at next appt. I will be curious to see what my counts are after the first round of chemo. I think I look very pale and my gums and mucous membranes look very pale. Any suggestions besides liver on what I should be eating?
    That class was really fun, it was so fun going through all of the free bees. I am going to find myself some of those eyebrow stencils b/c I am having difficulty with free handing the eye brows. I look like a clown, so my next trip to town, I am getting some stencils.
    I never have gotten email notification of posts, but I would like to know how to turn it on also, if you find out let me know.
    Do any of you know anything about Cancer Treatment Centers of America?

    Chemo: 2 down 4 to go.....
    Beav and Barb, sorry you have UPSC, but happy to read you posts.For myself knowing I'm not alone and reading everyone's stories has given me comfort and made me feel stronger. It took me about a month to stop grieving over my loss of the great health I had for 61 years, but now I'm ready to fight.
    Linda, picture of your grandchild is precious. Happy your 4th chemo is over. Hope the transfusion makes you feel alot better. My husband had to have one last year and he said he must have got some young blood because he felt great after the transfusion.I also have the constipation problem. I've been taking a tablespoon in the morning and in the evening of Phillips Milk of Magnesia, also a juice glass of Plum Sweet that you suggested. It usually works, but right after chemo it does seem to be at it's worse.
    Deanna, did not like to hear about the tingling sensation on your lips and tongue. Marge had so much trouble with that. Hope it goes away soon.
    Marge , hope all is going well for you. I got my copy of The Wellness Community: Guide to Fighting for Recovery from Cancer, by Harold Benjamin, that I ordered from Amazon. I love it, it really makes sense. I live about 40 miles from the Wellness Center in Santa Monica, Ca.
    Had my 2nd chemo yesterday and feel fine. I had the dry nose thing, used Ayr, saline nasal mist, worked for me. Saw my Gyn/Onc the day before my chemo. My ca-125 dropped back down to 24 after going up to 115 after surgery, made me very happy. So far I have my blood tests and see my Gyn/Onc the day before chemo, after what happened to you Linda, I'm glad it's that way.She also has me get a blood test between chemo's. I asked her about the Kombutcha drink that I like, she said it should be okay, just not to put any other new thing into my diet, so if it did have a negative effect we would know where it came from. I asked her about having my teeth cleaned,she said if my blood counts were good I could bump my chemo up one day and have my teeth cleaned the day before chemo.Post are not showing up in my e-mail either.
    You are all in my prayers... Teresa
  • shortmarge
    shortmarge Member Posts: 291
    Teresa 61 said:

    Chemo: 2 down 4 to go.....
    Beav and Barb, sorry you have UPSC, but happy to read you posts.For myself knowing I'm not alone and reading everyone's stories has given me comfort and made me feel stronger. It took me about a month to stop grieving over my loss of the great health I had for 61 years, but now I'm ready to fight.
    Linda, picture of your grandchild is precious. Happy your 4th chemo is over. Hope the transfusion makes you feel alot better. My husband had to have one last year and he said he must have got some young blood because he felt great after the transfusion.I also have the constipation problem. I've been taking a tablespoon in the morning and in the evening of Phillips Milk of Magnesia, also a juice glass of Plum Sweet that you suggested. It usually works, but right after chemo it does seem to be at it's worse.
    Deanna, did not like to hear about the tingling sensation on your lips and tongue. Marge had so much trouble with that. Hope it goes away soon.
    Marge , hope all is going well for you. I got my copy of The Wellness Community: Guide to Fighting for Recovery from Cancer, by Harold Benjamin, that I ordered from Amazon. I love it, it really makes sense. I live about 40 miles from the Wellness Center in Santa Monica, Ca.
    Had my 2nd chemo yesterday and feel fine. I had the dry nose thing, used Ayr, saline nasal mist, worked for me. Saw my Gyn/Onc the day before my chemo. My ca-125 dropped back down to 24 after going up to 115 after surgery, made me very happy. So far I have my blood tests and see my Gyn/Onc the day before chemo, after what happened to you Linda, I'm glad it's that way.She also has me get a blood test between chemo's. I asked her about the Kombutcha drink that I like, she said it should be okay, just not to put any other new thing into my diet, so if it did have a negative effect we would know where it came from. I asked her about having my teeth cleaned,she said if my blood counts were good I could bump my chemo up one day and have my teeth cleaned the day before chemo.Post are not showing up in my e-mail either.
    You are all in my prayers... Teresa

    Not Getting E-Mails Either
    I'm glad to say I have not had the constipation problem, but the lips and tongue yes. My tongue is still feeling funny. Funny Deanna about the man gas, that I do have. It can be embarrasing!

    Well, I went and saw the the oncol yesterday. They are setting me up for my CT scan and if everything is clean and looking good I'm on the three month schedule. And I don't like using the "if" like the doc said, so I told her I "would" see her in three months. She told me that would take at least six months to feel my normal self. We'll see about that, I plan on going dancing in the next few weeks.

    Teresa, happy to hear your done with two and you CA-125 is down and I'm glad you got the book.

    My prayers to all. MIND, BODY AND SOUL.

    Hugs
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Not Getting E-Mails Either
    I'm glad to say I have not had the constipation problem, but the lips and tongue yes. My tongue is still feeling funny. Funny Deanna about the man gas, that I do have. It can be embarrasing!

    Well, I went and saw the the oncol yesterday. They are setting me up for my CT scan and if everything is clean and looking good I'm on the three month schedule. And I don't like using the "if" like the doc said, so I told her I "would" see her in three months. She told me that would take at least six months to feel my normal self. We'll see about that, I plan on going dancing in the next few weeks.

    Teresa, happy to hear your done with two and you CA-125 is down and I'm glad you got the book.

    My prayers to all. MIND, BODY AND SOUL.

    Hugs

    Feeling weepy and a little out of control today.
    I haven't had much of the neuropathy-related side effects like that tingly mouth, but I did have it in my toes the first 2 rounds and then not again,.. so far. I was told to always call in anything related to neuropathy to my oncology nurse, as this should be carefully monitored and they may want to play with your chemo cocktail if it continues. Speaking of that, when they showed me the bag of carboplatin (a 'final review' policy they always go through before they hook you up where I go), I noticed that my carboplatin amount was different than the time before. The oncology nurse went to check and she said the amount of carboplatin I get has been different each time, based on my creatinine levels; I got as much as 760 mg (??) when my creatinine was high, and as little as 665 mg (??) when my creatinine level was lower like this time. I haven't looked it up to see if this is an attempt to ward off neuropathy symptoms, but I will see what I can find out. If it is related to neuropathy-management, it might be worth mentioning to your chemo-oncs.

    I should be happy today that I was able to poop without any more heroics than a stool softener, 2 big glasses of PlumSweet, and a bowl of Fiber One. But I feel all weepy today. I was trying to do some work yesterday afternoon for a client, and I emailed off a '1st draft' proposal that had at least 6 typos in it. I have a great staff that can be doing this work, but I just want to still be RELEVANT, to still be more than just a SICK person 24/7. Anyway, I got copied on an email this morning from my client's Executive Director saying that the client's Board Chairman was unhappy with "Procopio's shoddy work" on the draft. And I just bawled. I have always been so good at what I do, and this was just an early starting-point draft to get the process underway, all highlighted with questions and ideas I had that I wanted us to go over. But I would never have made typos like I did, 6 months ago, or allowed them to go out! Why am I so off my game?? Chemo brain?? I don't know. Maybe it's just hard to care about picky details, hard to focus on anything else. I don't want my business to be a casualty of my cancer. Now I am crying. Sorry. Maybe a nap will help me pull myself together.
  • shortmarge
    shortmarge Member Posts: 291

    Feeling weepy and a little out of control today.
    I haven't had much of the neuropathy-related side effects like that tingly mouth, but I did have it in my toes the first 2 rounds and then not again,.. so far. I was told to always call in anything related to neuropathy to my oncology nurse, as this should be carefully monitored and they may want to play with your chemo cocktail if it continues. Speaking of that, when they showed me the bag of carboplatin (a 'final review' policy they always go through before they hook you up where I go), I noticed that my carboplatin amount was different than the time before. The oncology nurse went to check and she said the amount of carboplatin I get has been different each time, based on my creatinine levels; I got as much as 760 mg (??) when my creatinine was high, and as little as 665 mg (??) when my creatinine level was lower like this time. I haven't looked it up to see if this is an attempt to ward off neuropathy symptoms, but I will see what I can find out. If it is related to neuropathy-management, it might be worth mentioning to your chemo-oncs.

    I should be happy today that I was able to poop without any more heroics than a stool softener, 2 big glasses of PlumSweet, and a bowl of Fiber One. But I feel all weepy today. I was trying to do some work yesterday afternoon for a client, and I emailed off a '1st draft' proposal that had at least 6 typos in it. I have a great staff that can be doing this work, but I just want to still be RELEVANT, to still be more than just a SICK person 24/7. Anyway, I got copied on an email this morning from my client's Executive Director saying that the client's Board Chairman was unhappy with "Procopio's shoddy work" on the draft. And I just bawled. I have always been so good at what I do, and this was just an early starting-point draft to get the process underway, all highlighted with questions and ideas I had that I wanted us to go over. But I would never have made typos like I did, 6 months ago, or allowed them to go out! Why am I so off my game?? Chemo brain?? I don't know. Maybe it's just hard to care about picky details, hard to focus on anything else. I don't want my business to be a casualty of my cancer. Now I am crying. Sorry. Maybe a nap will help me pull myself together.

    Typos
    Linda,

    Thanks for the smile, I'm so glad you pooped without much trouble today. :)

    I have notice that not only typos but I can be thinking one word and type another. I've learned to check, double check and triple check. So frustrating.

    I found out that the color for uterine cancer is peach and I found a website with wristbands and ribbons. The link is: http://choosehope.com/commerce/catalogType.jsp?catId=48.

    Peach, I like peach.

    Hang in there. MIND, BODY AND SOUL.

    Hugs