Metastatic endometrial cancer

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Comments

  • Sisters three
    Sisters three Member Posts: 165 Member
    #82
    NorahS said:

    Welcome to the site...sorry you had to join...

    I don't have time for a long reply right now, but my reaction to your explanation of your medical care (so far) is for you to get a 2nd opinion. Preferably with a gyn/oncologist.

    Please post again.  

     

    I also am sorry you had to join this site....

    I was diagnosed Adenocarcinoma stage 1-A grade 2 with positive pelvic washings, my Gyn-Oncologist didn't want me to have either radiation or chemo based on tumor size and no lymph node involvement.

    Basically I was told there was less than a 5% reacurrAnce and if I did either treatment it could possibly  up that percentage. I was somewhat worried yet thankful I didn't have to do further treatment. There are some lung nodules that are being watched closely, but those can't be considered a reacurrAnce since I apparently have had those since diagnoses. 

    You are so newly out of surgery that your energies need to go to rest and recouperation. I would try to enjoy the down time the best you can. There are several ladies on this site who had the same situation as you and have been NED for several years.

    My Onocologist was chosen after a second opinion. I was encouraged by the ladies on this site to find a doctor I was comfortable with and did it. My doctor now is ever watchful and totally upbeat and optimistic. 

    Keep in touch and rest, hopefully you have a good book to read or the remote control is close at hand!!

  • FourBee
    FourBee Member Posts: 52 Member
    #83
    ratajczaktrudy said:

    Hysterectomy

    Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

    Second and Third Opinion

    Hi, Megace is not a panacea and I strongly encourage you to seek a second and or third opinion with gynecological oncologists. So sorry to hear you are feeling poorly. You are right to question everything you are being told right now and the most important thing is to not rush. Should you opt for chemo it is most effective within 12 weeks of surgery so you have time and should focus on healing. Eat right (check what an anti-cancer diet is) and get some exercise and plenty of rest. Let us know how you are doing. Best wishes.

  • lbriggi
    lbriggi Member Posts: 2
    #84

    I am sorry to hear your news,  I too had endometrial cancer initially found in Oct 2010.  I had Davinci Total hysdirectomy and removed everything, tubes etc. I was grade 1A stage 2 all contained in my uterus at time of surgery in Jan 2011.  In Oct 2012 I was diagnosed with Wide spread Metatastic endometrial cancer - the cancer is in my abdominal and thoracic lymph nodes.  I have under gone 6 rounds of Chem carbo Taxo- my ca125 had dropped from 418 to 18 and holding steady for 2 months so far.  I am now considering radiation therapy.  I just turned 50 years old and am not willing to accept a single digit life expectancy.  I have visited many doctors looking for this agressive approach.  Push for as much treatment as your body can take.  Pray and be positive!  Wishing you the best!

     

  • FourBee
    FourBee Member Posts: 52 Member
    #85
    lbriggi said:

    I am sorry to hear your news,  I too had endometrial cancer initially found in Oct 2010.  I had Davinci Total hysdirectomy and removed everything, tubes etc. I was grade 1A stage 2 all contained in my uterus at time of surgery in Jan 2011.  In Oct 2012 I was diagnosed with Wide spread Metatastic endometrial cancer - the cancer is in my abdominal and thoracic lymph nodes.  I have under gone 6 rounds of Chem carbo Taxo- my ca125 had dropped from 418 to 18 and holding steady for 2 months so far.  I am now considering radiation therapy.  I just turned 50 years old and am not willing to accept a single digit life expectancy.  I have visited many doctors looking for this agressive approach.  Push for as much treatment as your body can take.  Pray and be positive!  Wishing you the best!

     

    lbriggi's treatment success

    Dear lbriggi, It was good to read that you are having a positive response to the chemo that you had. I see that you are new here and want to encourage you to post about your experience and to ask others what has worked for them. Your histology of a grade 2 cancer means it was more aggressive than some endometrial cancers like mine which is slow growing. Hope to hear more from you. Bee

  • soromer
    soromer Member Posts: 130
    #86
    FourBee said:

    Second and Third Opinion

    Hi, Megace is not a panacea and I strongly encourage you to seek a second and or third opinion with gynecological oncologists. So sorry to hear you are feeling poorly. You are right to question everything you are being told right now and the most important thing is to not rush. Should you opt for chemo it is most effective within 12 weeks of surgery so you have time and should focus on healing. Eat right (check what an anti-cancer diet is) and get some exercise and plenty of rest. Let us know how you are doing. Best wishes.

    Megace can work for some (about 10-15%)

    It has for me, at least for the past 18 months. 

    I started at Stage IIIC2, grade 2, endometrial adenocarcinoma in February 2011. The first-line chemo I had (doxorubicin and cisplatin) didn't work; I had lung mets by that September.

    I, too, thought Megace was just palliative, but then I decided to give it a try. Second-line chemos didn't have any better stats, and I was exhausted at that point. Fortunately for me, each subsequent CT scan I had showed dramatic improvement until I reached NED last June. I've stayed there and have no plans to regress!

    Now, I've also done a lot of complementary stuff, primarily Ayurveda and acupuncture, but also other dietary and lifestyle changes, so I can't say the Megace is the only factor in my improvement. But I think it has helped, especially since my cancer cells are strongly estrogen positive.

    The worst aspect of all of this cancer treatment to me is how hit-and-miss it still is. It's virtually impossible to tell in advance what will work, and what won't.

    Best of luck to you, whatever treatments you pursue.

     

     

  • snyderpm
    snyderpm Member Posts: 40
    #87
    soromer said:

    Megace can work for some (about 10-15%)

    It has for me, at least for the past 18 months. 

    I started at Stage IIIC2, grade 2, endometrial adenocarcinoma in February 2011. The first-line chemo I had (doxorubicin and cisplatin) didn't work; I had lung mets by that September.

    I, too, thought Megace was just palliative, but then I decided to give it a try. Second-line chemos didn't have any better stats, and I was exhausted at that point. Fortunately for me, each subsequent CT scan I had showed dramatic improvement until I reached NED last June. I've stayed there and have no plans to regress!

    Now, I've also done a lot of complementary stuff, primarily Ayurveda and acupuncture, but also other dietary and lifestyle changes, so I can't say the Megace is the only factor in my improvement. But I think it has helped, especially since my cancer cells are strongly estrogen positive.

    The worst aspect of all of this cancer treatment to me is how hit-and-miss it still is. It's virtually impossible to tell in advance what will work, and what won't.

    Best of luck to you, whatever treatments you pursue.

     

     

    Megace

    Hi soromer, I am glad you are doing good.  It seems like the Megace is working good on me also.  I am more than 2 yrs post chemo and have been taking Megace since then and my CA 125 has been between 3.3 and 4.8 and all the scans are very negative.   I know are dreaded disease can still visit us again, but I wanted to tell you a story that I got from my chemo doctor, and it was his idea for me to take the Megace.  Anyway, when he was doing research, a woman at the hospital had some terrible tumors, many, in her breast.  I don't know if she had already had chemo, but they tried the Megace on her and the tumors went away and after about 15 years, she asked to stop taking the Megace because of the weight gain.  They said ok, and then the tumors came right back, so she went back on the Megace and the tumors went away. 

    He told me that it works at about 60%-70% on lower grade, less aggressive cancers, like ours, and the higher grade cancers have a much reduced percentage for success.  Well, hopefully we got lucky with the Megace.   I wish you a lot of luck.  Pat

     

  • soromer
    soromer Member Posts: 130
    #88
    snyderpm said:

    Megace

    Hi soromer, I am glad you are doing good.  It seems like the Megace is working good on me also.  I am more than 2 yrs post chemo and have been taking Megace since then and my CA 125 has been between 3.3 and 4.8 and all the scans are very negative.   I know are dreaded disease can still visit us again, but I wanted to tell you a story that I got from my chemo doctor, and it was his idea for me to take the Megace.  Anyway, when he was doing research, a woman at the hospital had some terrible tumors, many, in her breast.  I don't know if she had already had chemo, but they tried the Megace on her and the tumors went away and after about 15 years, she asked to stop taking the Megace because of the weight gain.  They said ok, and then the tumors came right back, so she went back on the Megace and the tumors went away. 

    He told me that it works at about 60%-70% on lower grade, less aggressive cancers, like ours, and the higher grade cancers have a much reduced percentage for success.  Well, hopefully we got lucky with the Megace.   I wish you a lot of luck.  Pat

     

    Great to hear, Pat!

    Love it that it's working for you so well. I really appreciate hearing these success stories. What you say in terms of results is better than what I have heard, so this is very welcome feedback.

    My oncologist is talking about lowering my dose this fall--from 160 mg/day to 80--and I have to say I'm apprehensive about that. I guess we'll see when we get there.

    I have gained some weight since going on it, no question. Maybe 10 pounds or so. But that seems like a very small price to pay for NED.

    Best of luck to you, too!

    soromer/Kate

  • Skej
    Skej Member Posts: 3
    #89
    soromer said:

    Megace can work for some (about 10-15%)

    It has for me, at least for the past 18 months. 

    I started at Stage IIIC2, grade 2, endometrial adenocarcinoma in February 2011. The first-line chemo I had (doxorubicin and cisplatin) didn't work; I had lung mets by that September.

    I, too, thought Megace was just palliative, but then I decided to give it a try. Second-line chemos didn't have any better stats, and I was exhausted at that point. Fortunately for me, each subsequent CT scan I had showed dramatic improvement until I reached NED last June. I've stayed there and have no plans to regress!

    Now, I've also done a lot of complementary stuff, primarily Ayurveda and acupuncture, but also other dietary and lifestyle changes, so I can't say the Megace is the only factor in my improvement. But I think it has helped, especially since my cancer cells are strongly estrogen positive.

    The worst aspect of all of this cancer treatment to me is how hit-and-miss it still is. It's virtually impossible to tell in advance what will work, and what won't.

    Best of luck to you, whatever treatments you pursue.

     

     

    Ayurveda

    Dear Soromer,

     

    Can you tell me what kind of ayurveda are you doing and which doctor is helping you and what medicines are you using. I am in india and would like to benefit from this if possible.

     

    Just fyi we are using graviola tea leaves and carrot juice as support.

     

    Skej

     

  • Skej
    Skej Member Posts: 3
    #90
    soromer said:

    Megace can work for some (about 10-15%)

    It has for me, at least for the past 18 months. 

    I started at Stage IIIC2, grade 2, endometrial adenocarcinoma in February 2011. The first-line chemo I had (doxorubicin and cisplatin) didn't work; I had lung mets by that September.

    I, too, thought Megace was just palliative, but then I decided to give it a try. Second-line chemos didn't have any better stats, and I was exhausted at that point. Fortunately for me, each subsequent CT scan I had showed dramatic improvement until I reached NED last June. I've stayed there and have no plans to regress!

    Now, I've also done a lot of complementary stuff, primarily Ayurveda and acupuncture, but also other dietary and lifestyle changes, so I can't say the Megace is the only factor in my improvement. But I think it has helped, especially since my cancer cells are strongly estrogen positive.

    The worst aspect of all of this cancer treatment to me is how hit-and-miss it still is. It's virtually impossible to tell in advance what will work, and what won't.

    Best of luck to you, whatever treatments you pursue.

     

     

    Ayurveda

    Dear Soromer,

     

    Can you tell me what kind of ayurveda are you doing and which doctor is helping you and what medicines are you using. I am in india and would like to benefit from this if possible.

     

    Just fyi we are using graviola tea leaves and carrot juice as support.

     

    Skej

     

  • Skej
    Skej Member Posts: 3
    #91
    soromer said:

    Megace can work for some (about 10-15%)

    It has for me, at least for the past 18 months. 

    I started at Stage IIIC2, grade 2, endometrial adenocarcinoma in February 2011. The first-line chemo I had (doxorubicin and cisplatin) didn't work; I had lung mets by that September.

    I, too, thought Megace was just palliative, but then I decided to give it a try. Second-line chemos didn't have any better stats, and I was exhausted at that point. Fortunately for me, each subsequent CT scan I had showed dramatic improvement until I reached NED last June. I've stayed there and have no plans to regress!

    Now, I've also done a lot of complementary stuff, primarily Ayurveda and acupuncture, but also other dietary and lifestyle changes, so I can't say the Megace is the only factor in my improvement. But I think it has helped, especially since my cancer cells are strongly estrogen positive.

    The worst aspect of all of this cancer treatment to me is how hit-and-miss it still is. It's virtually impossible to tell in advance what will work, and what won't.

    Best of luck to you, whatever treatments you pursue.

     

     

    Ayurveda

    Dear Soromer,

     

    Can you tell me what kind of ayurveda are you doing and which doctor is helping you and what medicines are you using. I am in india and would like to benefit from this if possible.

     

    Just fyi we are using graviola tea leaves and carrot juice as support.

     

    Skej

     

  • smitjo2
    smitjo2 Member Posts: 3
    #92
    Sorry for your news

    I agree with Lisa getting a second opinion is a fantastic idea. My Mom's orginal ob/gyn said she had a stage 2 uterine cancer. When we went to better doctors it actually turned out to be Stage 4. If you can try to get a evaluation from the Cancer Treatment Centers of America. I am not sure where you are located but they are all over.

    They ahve been so helpful for my Mom and our family. They arrange all the hotel and travel arangements, have dieticians, therapy, massages. If you need anything please let me know.

    Jodi Smith

    http://www.cancercenter.com/

  • smitjo2
    smitjo2 Member Posts: 3
    #93
    Sorry for your news

    I agree with Lisa getting a second opinion is a fantastic idea. My Mom's orginal ob/gyn said she had a stage 2 uterine cancer. When we went to better doctors it actually turned out to be Stage 4. If you can try to get a evaluation from the Cancer Treatment Centers of America. I am not sure where you are located but they are all over.

    They ahve been so helpful for my Mom and our family. They arrange all the hotel and travel arangements, have dieticians, therapy, massages. If you need anything please let me know.

    Jodi Smith

    http://www.cancercenter.com/

  • tattooedtxgirl
    tattooedtxgirl Member Posts: 61
    #94
    nancygt said:

    More hope
    Like many of the women on here, I have stage 3, grade 3 papillary Serous, have had full surgery,chemo twice (not nearly as bad as I anticipated)and three different rounds of radiation-external wide area pelvis, brachytherapy and most recently IMRT (amazing and relatively new technology worth reading up on).I had 1st recurrence 6 months after end of radiation/chemo sandwich and then second recurrence 4 months after clean PET scan following IMRT radiation therapy.
    First, doctors rely on statistics that are out of date based on new treatments. We must be very cautious with USPC as it was only sepasrately diagnosed 30 years ago, statistical base is small and early treatment did not recognize its agreesive nature and ability to recur. Even the Amer. Cancer society book tells us that USPC accounts for less than 55 of cases bot is responsible for most ofn the deaths.
    I had second opinion at M.D. Anderson when i saw those statistics and was freaked out because I had my first recurrence. All the doctors were frank that once it recurs, it will not be cured but is treatable. They have had patients where stats say life expectancy should be 2 years but many patients now alive after 8.10,12 years- not without recurrences and treatment but still with quality of life.I also read the Ovarian websites as my oncologist tells me that UPSC patients are so much more similar to that cancer than most uterine cancer-and you will find many ladies there with multiple recurrences who fully understand "chronic but treatable". I wish I could find the article from Cure magazine last year where they write about coping with chronic cancer - I sent it to my friends and family and apparently did not keep a copy for myself.They say that many cancers that were labelled terminal are now labelled "chronic" and an entire new attitude and support system is being created so patients don't overreact (and maybe doctors need to understand this better) and can accept that we will live longer than backward looking statistical estimates, that we can still have joy in our lives and will have good stretches and bad stretches where cancer will impact our remaining life but doesn't have to rule it.
    just recently in September my dear friend who has stage 4 lung cancer and my other good "healthy" friends had dinner to celebrate my birthday. My cancer buddy and I know we are unlikely to get normal life expectancy for U.S. female (80 years old). So every six months-her birthday is in March- we will celebrate what we have named as SPLEAB- Shortened Projected Life Expectancy Additional Birthday (I am 61 and she is 56).So with doubling up annually with 2 birthdays,if I get the 8 years my oncologist feels is entirely possible, I will celebrate my 80th SPLEAB birthday in 9 years and promised to take every one at that dinner to Las Vegas to celebrate.(And if I have to pay for that trip, I will be the happiest person on the face of the earth). I know that may seem like a small -and perhaps somewhat silly- ritual but it is one of the ways you find to live a full life in spite of this ugly disease.And even if I am fairly certain it is the cancer that will eventually get me (not likely it will be getting hit by a bus like many well intentioned people point out), I don't know when (just read about all the people still making it despite dire predictions and statistics)and I intend to cram as much living in to what ever time I do have.I start 8 rounds of two drug chemo the beginning of January for the latest recurrence and while, I do not look forward to it, I am glad there are still drugs to try and glad for all the good practical advice I get on this website (fur lined crocs,etc) and for all the inspiration from the battle scar5red but still hopeful survivors.

    SPLEAB

    nancy,

     

    That's fantastic!! I like that you celebrate SPLEAB! 

    I am finding new ways to live and stay positive.

    All of you ladies are truly an inspiration!

     

    Hugs,

    Crystal

  • kumar
    kumar Member Posts: 107
    #95
    Hi

    Hi,

     

    How are you now days?

  • kumar
    kumar Member Posts: 107
    #96
    snyderpm said:

    Megace

    Hi soromer, I am glad you are doing good.  It seems like the Megace is working good on me also.  I am more than 2 yrs post chemo and have been taking Megace since then and my CA 125 has been between 3.3 and 4.8 and all the scans are very negative.   I know are dreaded disease can still visit us again, but I wanted to tell you a story that I got from my chemo doctor, and it was his idea for me to take the Megace.  Anyway, when he was doing research, a woman at the hospital had some terrible tumors, many, in her breast.  I don't know if she had already had chemo, but they tried the Megace on her and the tumors went away and after about 15 years, she asked to stop taking the Megace because of the weight gain.  They said ok, and then the tumors came right back, so she went back on the Megace and the tumors went away. 

    He told me that it works at about 60%-70% on lower grade, less aggressive cancers, like ours, and the higher grade cancers have a much reduced percentage for success.  Well, hopefully we got lucky with the Megace.   I wish you a lot of luck.  Pat

     

    Hi

    Hi,

     

    How is urs lungs mets?

     

    Ta Kumar

  • sarahsuzy
    sarahsuzy Member Posts: 2
    #97
    lindaprocopio said:

    The Nuelasta bone pain doesn't last too long (((HUGS))).
    Those immune boosters (Nuelasta) didn't use to bother me, but now they give me waves of shivery pain up my spine that takes my breath away when I sit on some positions. I just wanted to reassure you that it typically only lasts 1 or 2 days and then you're fine. The pain is the white blood cells rapidly expanding within the confined finite space of your bones. If your white counts aren't really that low, maybe you can talk your oncologist into skipping the Nuelasta next time.

    Stay hydrated; that helps a LOT with getting over carbo/taxol. Drink one cup after the next of green tea or water, stayin away from caffeine or alcohol. You'll feel MUCH better in a couple of days. I'm so sorry you feel bad today.

    I had carbo (just carboplatin for me now, no taxol this time as taxol stopped working for me) on Thursday, too.

    Claritin

    Taking regular Claritin before your Nuelasta shot or taxol - like 1-2 hours before - greatly reduces or eliminates bone pain. Hope this helps someone. Regular Claritin, NOT claritin D. It can be generic. Prayers to all. 

  • sarahsuzy
    sarahsuzy Member Posts: 2
    #98
    lindaprocopio said:

    The Nuelasta bone pain doesn't last too long (((HUGS))).
    Those immune boosters (Nuelasta) didn't use to bother me, but now they give me waves of shivery pain up my spine that takes my breath away when I sit on some positions. I just wanted to reassure you that it typically only lasts 1 or 2 days and then you're fine. The pain is the white blood cells rapidly expanding within the confined finite space of your bones. If your white counts aren't really that low, maybe you can talk your oncologist into skipping the Nuelasta next time.

    Stay hydrated; that helps a LOT with getting over carbo/taxol. Drink one cup after the next of green tea or water, stayin away from caffeine or alcohol. You'll feel MUCH better in a couple of days. I'm so sorry you feel bad today.

    I had carbo (just carboplatin for me now, no taxol this time as taxol stopped working for me) on Thursday, too.

    Claritin

    Taking regular Claritin before your Nuelasta shot or taxol - like 1-2 hours before - greatly reduces or eliminates bone pain. Hope this helps someone. Regular Claritin, NOT claritin D. It can be generic. Prayers to all. 

  • Sandra99
    Sandra99 Member Posts: 2
    edited February 2017 #99
    primary serous peritoneal carcinoma

    Hello Fellow Warriors!

    I had surgery February 9th - removal of 9.5 x 7 x 3 cm tumor on the omentum.  When I saw the color photo of my doctor, Dr. Chen-Chi Hou and Dr. Yen-Yin Chiang I was floored - it was a huge thing - the omentum and the bulbulous, nutriton sucking, hemorraghing alien!  The photo brought to mind my photos with students!  They also removed the uterus, ovaries, fallopian tubes, cervix, 19 lymph nodes (all found cancer free).  On October 20 my CA 125 was 388 ...on Jan 8 it was 13.2.  After surgery it was 26.  I had my first chemo with lipodox and carboplatin on Feb 16 (14 hours b/c I have to have a slow drip).  My first five chemos were taxol/paxol.  Then the little tumor appeared lower left abdomen.  It is a devastating diagnosis - I was on a mountain on Sunday, went to my village hospital ER Monday night - they did a CT and saw only air in my lungs and poo in my colon.  The Thursday before I picked up an A+ health report for school.  In September I donated blood.  On October 13 my friend urged me to get to a hospital out of my village so I went into Taipei to the ER at National Taiwan University Hospital.  The next morning I was meeting bone and soft tissue oncologist Dr. Ruey-Long Hong.  I was in such a fog:  "can I donate my organs?"  Him:  "They usually don't want organs from people with cancer."  Me:  "Oh yeah."  I just could not believe it.  The docs have been EXCELLENT.  Got right on it.  By the time of my second chemo in December I was xenophobic, paranoid, terrified.  I made it over that hurdle.  I worked for the first 2 chemos - 12 hours a day.  Then when my contract was over Dec 31 I decided to really take care of me.  I had been on the endothelium food plan (basically the same foods as healthy cancer eating).  The surgery took a lot more out of me than I expected.  My path friend just confirmed the primary serous peritoneal carcinoma diagnosis b/c somehow I got the idea that it was still ovarian.  But it really is not.  I wanted HIPEC but was not told until 24 hours b4 surgery that it was six thousand bucks....no time to gather the cash.  I would have been a suitable candidate I now know b/c Dr. Chen took out all six feet of poop shoot (colon) examining the organ for tumor, tissue, mass, 'sticky.'   And he put them back in (just thinking about this gives me the creeps - lol).  Anyway Dr Chen told me a very uplifting story of a woman who lived ten years with this diagnosis.  That's the kind of thing I want to hang with not the doom and gloom.  The bottom line is we could all kick the boat tonight - I use public transporation (saving the planet before I kick the bucket) and the bus could crash on the way to chemo and I could die - so I need to do my part and be positive and grateful for every day I have regardless of what happens.  Self pity is more damaging to our 72 trillion cells than any cancer cell - so fellow cancer'ettes and cancers - here we are to love, and moan, and educate each other.  I write a gratitude list every day.  What are some of your strategies to cope?  My besties just took me for 24 hours of pure love - homemade waffles for breakfast, dinner at a New Zealand burger joint with killer milkshakes (being true to my cancer foods I had a TASTE of salted carmel - yummmm)...See's Candies....walks with dogs...snuggles with dogs while sleeping on a memory foam mattress....doesn't get much better than this (I live in a fishing village about 2 hours from 'civilization' called Taipei)....going for my THIRD shower since surgery February 9th.  Anxious to hear from you guys b/c it does help to talk to others on this journey.  x Sandra99

  • hdjjlss
    hdjjlss Member Posts: 7
    #100
    HellieC said:

    My experience with carbo/taxol
    I just finished 6 cycles of carbo/taxol on 19 Jan. It wasn't great but it was do-able. I had the infusions on a Wed, was OK Thurs then tended to drop like a stone with joint aches, tiredness, "fog" brain" on Fri which lasted until Mon/Tue the following week. Just took it easy, went to bed when it got too much and generally tried to chill out. Took codeine based painkillers when I needed them. Luckily I didn't have to work. By the following Wed I was usually OK and generally improved a little each day until the next cycle. I didn't have the Neulasta shots (I live in the UK and it doesn't seem to be the usual protocol here). But I was loaded up with steroids, antiemetics and antihistamines prior to each infusion and for 3 days afterwards.
    Helen

    How are you doing?

    How are you doing?

  • hdjjlss
    hdjjlss Member Posts: 7
    edited July 2017 #101
    Double Whammy said:

    Happened to me with last chemo
    First, I'm happy to hear that you've been able to manage some of the side effects from the Neulasta.

    I have hypertension and take BP meds. After my last chemo (for breast cancer - but side effects are side effects) I was running a low grade fever and I saw my primary care physician. I wasn't aware that my BP was really low and that I was tachycardic, anemic, with an elevated white blood cell count ("mystery" infection). Scared the you know what outa me. I wasn't bad enough to be hospitalized or need a transfusion, but I did take my BP daily and made adjustments to my medicines accordingly, as Ro describes. I was followed very closely. It took a couple of weeks for both my blood pressure and heart rate to return to normal, but it did.

    Be sure and report your side effects and if possible, record your blood pressure readings so you can tell your physician what's going on. I saw my primary care physician because she takes such good care of me and my oncologist is farther away and I really didn't want to have to go there. They also communicate.

    So, while I had no complications and things resolved pretty much on their own, these symptoms were taken very seriously and I think yours should be, too.

    Suzanne

    Checking in

    wanted to see how you are

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