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

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  • Teresa 61
    Teresa 61 Member Posts: 84 Member

    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

    Typos
    Oh Linda, this UPSC we all have is pretty much a 24/7, and only those who walk in our shoes understand the struggle. Like Marge said, check, double check and triple check. Two more chemos, then your body and mind will start getting back to normal and your work will to. I could never do your job, with or without chemo. Take Care....
  • shortmarge
    shortmarge Member Posts: 291
    Teresa 61 said:

    Typos
    Oh Linda, this UPSC we all have is pretty much a 24/7, and only those who walk in our shoes understand the struggle. Like Marge said, check, double check and triple check. Two more chemos, then your body and mind will start getting back to normal and your work will to. I could never do your job, with or without chemo. Take Care....

    Another Website
    Here is a women who lost her mom to uterine cancer. Maybe we should all join up with her and make women just as aware of uterine cancer as breast cancer!

    http://beatuterinecancer.com/Home_Page.php
  • deanna14
    deanna14 Member Posts: 732

    Another Website
    Here is a women who lost her mom to uterine cancer. Maybe we should all join up with her and make women just as aware of uterine cancer as breast cancer!

    http://beatuterinecancer.com/Home_Page.php

    Amen!
    Marge, I am so glad that you said that. Someone started a movement to make women aware of breast cancer. Now the screening tools are better, it is found sooner and the survival rate has gone up. You don't hear much about uterine cancer, they have lousy screening.... and people (like me), believe that if they are getting their yearly gyn exam that they are okay. That is just not true! I never missed a yearly gyn exam with pap smear and look where it got me! I don't know how one gets it started, but there needs to be a push for better screening for uterine cancer. Any ideas? I want to hold a sign and scream out to the whole wide world!!!

    Linda, I am so sorry you are having these troubles. I have noticed that I don't concentrate well right now and have not since the diagnosis was made. There is just too much on my mind.
    I am normally quite good at typing and I type words backwards and stuff like I'm dyslexic or something. ?Chemo? Hang in there, like Theresa said 2 more chemos and you are done. You can do that and let it be okay to ask for help right now. It IS okay, it's only for now and then you will be back stronger than ever. I believe that this bump in the road is making us stronger, better, more passionate and compassionate women.

    My lip and tonque tingling is like just for a fleeting moment and then it is gone, kinda gives me a creepy ewwwww feeling, then it's gone. Maybe it is not the chemo? My 3 month CT scan was good... thank you Lord.

    God Bless you all. Hugs.
  • pjba11
    pjba11 Member Posts: 188
    Been in Hosp
    Just spent nine days in hell... and it is not me but my husband in the hosp. We thought it was 'just' gall bladder. Ended up with 'hot super prancreatitus'. One night in a cardiac unit on one to one and then off to the the oncology floor for 6 nights and days because of a lack of beds. hard on me.. a mind game.) He was loaded into a chopper to be airlifted, then out again to a ground crew because of instability. We had to transfer 90 miles on ground. Wrong pain meds made him see little green men and all unknowns, meanwhile I have had a 9 day run of trying to stay ahead of him jumping in and out of bed with IVs and all 6'3 and 305 pounds of him unstable...........I am exhausted. Finally got him out of our small town hosp and into a hosp with pain managemant and now he is not a danger to either of us. They gave him the wrong mix of pain meds and was horrible abused. I have an attorney and will put all I have into this one. Horrible inhumane treatment and unprofessional ethics. Sorry to not be there for any of you.
  • deanna14
    deanna14 Member Posts: 732
    pjba11 said:

    Been in Hosp
    Just spent nine days in hell... and it is not me but my husband in the hosp. We thought it was 'just' gall bladder. Ended up with 'hot super prancreatitus'. One night in a cardiac unit on one to one and then off to the the oncology floor for 6 nights and days because of a lack of beds. hard on me.. a mind game.) He was loaded into a chopper to be airlifted, then out again to a ground crew because of instability. We had to transfer 90 miles on ground. Wrong pain meds made him see little green men and all unknowns, meanwhile I have had a 9 day run of trying to stay ahead of him jumping in and out of bed with IVs and all 6'3 and 305 pounds of him unstable...........I am exhausted. Finally got him out of our small town hosp and into a hosp with pain managemant and now he is not a danger to either of us. They gave him the wrong mix of pain meds and was horrible abused. I have an attorney and will put all I have into this one. Horrible inhumane treatment and unprofessional ethics. Sorry to not be there for any of you.

    So Sorry...
    Peggy,
    So sorry for all of your troubles. I hope your husband is doing better now and on the road to recovery.
    Don't you worry about us, you just take care of your hubby and get him well and home with you where you know he will be well cared for.
    We are all getting along well and have even added a new member.
    Hang in there and get some rest!
    Prayers to you and your husband.
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    deanna14 said:

    So Sorry...
    Peggy,
    So sorry for all of your troubles. I hope your husband is doing better now and on the road to recovery.
    Don't you worry about us, you just take care of your hubby and get him well and home with you where you know he will be well cared for.
    We are all getting along well and have even added a new member.
    Hang in there and get some rest!
    Prayers to you and your husband.

    Oh Peggy....
    So sorry to hear what your husband and you have been going through. Is he still in the hospital? Let us know how he is doing.
    I was starting to wonder what happened to you. The last time you posted you said something about getting your 3 month check-up at the end of the month. With all that's happened you probably weren't able to do that.Praying for your husband's quick recovery... Teresa
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    pjba11 said:

    Been in Hosp
    Just spent nine days in hell... and it is not me but my husband in the hosp. We thought it was 'just' gall bladder. Ended up with 'hot super prancreatitus'. One night in a cardiac unit on one to one and then off to the the oncology floor for 6 nights and days because of a lack of beds. hard on me.. a mind game.) He was loaded into a chopper to be airlifted, then out again to a ground crew because of instability. We had to transfer 90 miles on ground. Wrong pain meds made him see little green men and all unknowns, meanwhile I have had a 9 day run of trying to stay ahead of him jumping in and out of bed with IVs and all 6'3 and 305 pounds of him unstable...........I am exhausted. Finally got him out of our small town hosp and into a hosp with pain managemant and now he is not a danger to either of us. They gave him the wrong mix of pain meds and was horrible abused. I have an attorney and will put all I have into this one. Horrible inhumane treatment and unprofessional ethics. Sorry to not be there for any of you.

    ((((PEGGY)))))) You poor poor thing!
    What an ordeal! My heart goes out to you, girl! That sounds absolutely hellish. And the bite is that they will charge you an arm and a leg for that inhumane treatment; that really puts the cherry on the top of a bad time (understatement) and poor care. All I can do is send a cyber hug, and share in your anger. ((((Peggy)))) I had EXTREMELY poor care, with the exception of my wonderful surgeon, when I was at Hershey Medical for my hysterectomy. I had no idea medical care could be that shoddy, but sometimes it really is.

    8:15AM bloodwork for me tomorrow and probably a transfusion unless this pounding heart and blood roaring in my ears is my imagination.

    I sent an email to the webmaster here asking if we could have our own Uterine Cancer Discussion Board instead of just this thread under Gynecologic Cancer. That way new topics we discuss could be 'searchable' for others doing research. I'll let you know if they reply. I think shorter threads within our own Board would load faster and work better. Anyone rather not, if they go along with it?

    One more hug: (((Peggy)))))
  • Ro10
    Ro10 Member Posts: 1,561 Member

    ((((PEGGY)))))) You poor poor thing!
    What an ordeal! My heart goes out to you, girl! That sounds absolutely hellish. And the bite is that they will charge you an arm and a leg for that inhumane treatment; that really puts the cherry on the top of a bad time (understatement) and poor care. All I can do is send a cyber hug, and share in your anger. ((((Peggy)))) I had EXTREMELY poor care, with the exception of my wonderful surgeon, when I was at Hershey Medical for my hysterectomy. I had no idea medical care could be that shoddy, but sometimes it really is.

    8:15AM bloodwork for me tomorrow and probably a transfusion unless this pounding heart and blood roaring in my ears is my imagination.

    I sent an email to the webmaster here asking if we could have our own Uterine Cancer Discussion Board instead of just this thread under Gynecologic Cancer. That way new topics we discuss could be 'searchable' for others doing research. I'll let you know if they reply. I think shorter threads within our own Board would load faster and work better. Anyone rather not, if they go along with it?

    One more hug: (((Peggy)))))

    Still having trouble getting my posts on. Any suggestions???
    I put my initial post on again, but do not see it. It says I have 4 posts, but have not seen any on this site. Any suggestions on how to get my initial post and picture on the site? I am all for getting it easier to load and review posts. I have had problems, which I don't know how to correct.
    Peggy I am sorry to hear about your ordeal with your husband. Pancreatitis can be so painful, and stressful. Not that you need any of either.
    Linda I hope your blood work goes okay, but it sounds like with your pounding heart you need some more blood. Theresa and Marge I hope you are doing well. Hugs to all of you.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Ro10 said:

    Still having trouble getting my posts on. Any suggestions???
    I put my initial post on again, but do not see it. It says I have 4 posts, but have not seen any on this site. Any suggestions on how to get my initial post and picture on the site? I am all for getting it easier to load and review posts. I have had problems, which I don't know how to correct.
    Peggy I am sorry to hear about your ordeal with your husband. Pancreatitis can be so painful, and stressful. Not that you need any of either.
    Linda I hope your blood work goes okay, but it sounds like with your pounding heart you need some more blood. Theresa and Marge I hope you are doing well. Hugs to all of you.

    Welcome, Ro! (& Ro's story, posted by Linda)
    Hi, Ro! This website has been hard to use lately. I think we have too many posts under a single thread and need our own Discussion Board like the Ovarian Cancer Sisters have.

    I hope this is okay. I will go ahead and post your initial email to me, so the others here can 'meet' you.

    RO's STORY:
    "Unfortunately I too have USPC Stage 3-C. Our stories are so similiar its scary."

    "I too found out I had an irregular Pap test. It was highly suggestive of adenocarcinoma. I then had and endometrial biopsy then and it was also highly suggestive of adenocarcinoma. I agree with whoever said "OUCH" on the biopsy."

    "January 5 I had a robotic hysterectomy with removal of tubes and ovaries, 20 lymph nodes were removed and had an omentum biopsy. My tumor was so small 1.5 cm by 1 cm. It had not penetrated more that 50 percent of the uterine wall. However it was in 5 of the lymph nodes and there were metastatic cells in the abdominal washing."

    "Again as you have stated the doctor said it was rare to catch it on a routine pap test. I had no symptoms at all so both my regular gynecologist and my OB GYN onocologist felt it was early stage and the hysterectomy would take care of everything. What a shock it was to get the results after surgery. Again my doctor was so suprised with the diagnosis.

    "I had my first chemo Friday, 1/30/2009. I will get the sandwich treatment of 3 chemo of Taxol/Carbo. Have a rest period of 2 -3 weeks. The I will have 5 -6 weeks of radiation, then another rest period. The another 3 chemo treatments, each 3 weeks apart. I did have a reaction to the Taxol, so my 3 hour Taxol treatment ended up to be 5 1/2 hours. But at least I was able to get the full dose of medication. Due to the reaction I got double steroids, so I am hyped up tonight. Luckily I had not reaction to the Carbo".

    "My daughter foung this site and sent it to me. I spent two days reading everything. I have so enjoyed reading all the blogs from everyone. They have been encouraging. I have tried to log on but they say I am not authorized to post anything. I wanted to post before my Chemo and tell my story. Can you give me any suggestions? I e-mailed the NCS site, but all they said was to make sure I was logged on. I thought I was logged on. I tried again tonight, but was given the same message. Any suggestions you can give me would be greatly appreciated. Thanks for letting me rabble on I guess it is a "hamster day" ( or night). My log in name will be Ro10, as I think I am the 10th person to join the USPC Sisterhood."

    "I did not have a CA -125 done yet. I asked about it at my post-op visit and he said it would probably be elevated after the surgery. I am having on with my next blood draw. I have not had a CT scan either. I will ask him when I will have my first one. He said after treatments were completed they would be every 3 months including lab and pelvic exam."

    "I am a registered nurse, so I know what all can happen. Sometimes I think that makes it scarier. I have taken care of so many cancer patients, but it sure is different when it is you dealing with the cancer. I have a great support system with my husband and family and friends. So many people care about me that it really touches my heart. My husband has been having a really hard time dealing with all of this, but he is doing better this week. I was prepared for the treatment. I think he was ready for a treatment plan but not the stage of the cancer. I was just glad I have 3 chemo and then the radiation and then 3 more chemo. Although I have to say that the chemo was not as bad as I had anticipated. I know it has just been one day, but I expected I would be nauseated through the treatment and days afterwards. I was nauseated for 9 months with both of my pregnancies."

    "Thank you so much for all your information you have provided."
    (From our newest UPSC Sister: Roberta.)
  • deanna14
    deanna14 Member Posts: 732

    Welcome, Ro! (& Ro's story, posted by Linda)
    Hi, Ro! This website has been hard to use lately. I think we have too many posts under a single thread and need our own Discussion Board like the Ovarian Cancer Sisters have.

    I hope this is okay. I will go ahead and post your initial email to me, so the others here can 'meet' you.

    RO's STORY:
    "Unfortunately I too have USPC Stage 3-C. Our stories are so similiar its scary."

    "I too found out I had an irregular Pap test. It was highly suggestive of adenocarcinoma. I then had and endometrial biopsy then and it was also highly suggestive of adenocarcinoma. I agree with whoever said "OUCH" on the biopsy."

    "January 5 I had a robotic hysterectomy with removal of tubes and ovaries, 20 lymph nodes were removed and had an omentum biopsy. My tumor was so small 1.5 cm by 1 cm. It had not penetrated more that 50 percent of the uterine wall. However it was in 5 of the lymph nodes and there were metastatic cells in the abdominal washing."

    "Again as you have stated the doctor said it was rare to catch it on a routine pap test. I had no symptoms at all so both my regular gynecologist and my OB GYN onocologist felt it was early stage and the hysterectomy would take care of everything. What a shock it was to get the results after surgery. Again my doctor was so suprised with the diagnosis.

    "I had my first chemo Friday, 1/30/2009. I will get the sandwich treatment of 3 chemo of Taxol/Carbo. Have a rest period of 2 -3 weeks. The I will have 5 -6 weeks of radiation, then another rest period. The another 3 chemo treatments, each 3 weeks apart. I did have a reaction to the Taxol, so my 3 hour Taxol treatment ended up to be 5 1/2 hours. But at least I was able to get the full dose of medication. Due to the reaction I got double steroids, so I am hyped up tonight. Luckily I had not reaction to the Carbo".

    "My daughter foung this site and sent it to me. I spent two days reading everything. I have so enjoyed reading all the blogs from everyone. They have been encouraging. I have tried to log on but they say I am not authorized to post anything. I wanted to post before my Chemo and tell my story. Can you give me any suggestions? I e-mailed the NCS site, but all they said was to make sure I was logged on. I thought I was logged on. I tried again tonight, but was given the same message. Any suggestions you can give me would be greatly appreciated. Thanks for letting me rabble on I guess it is a "hamster day" ( or night). My log in name will be Ro10, as I think I am the 10th person to join the USPC Sisterhood."

    "I did not have a CA -125 done yet. I asked about it at my post-op visit and he said it would probably be elevated after the surgery. I am having on with my next blood draw. I have not had a CT scan either. I will ask him when I will have my first one. He said after treatments were completed they would be every 3 months including lab and pelvic exam."

    "I am a registered nurse, so I know what all can happen. Sometimes I think that makes it scarier. I have taken care of so many cancer patients, but it sure is different when it is you dealing with the cancer. I have a great support system with my husband and family and friends. So many people care about me that it really touches my heart. My husband has been having a really hard time dealing with all of this, but he is doing better this week. I was prepared for the treatment. I think he was ready for a treatment plan but not the stage of the cancer. I was just glad I have 3 chemo and then the radiation and then 3 more chemo. Although I have to say that the chemo was not as bad as I had anticipated. I know it has just been one day, but I expected I would be nauseated through the treatment and days afterwards. I was nauseated for 9 months with both of my pregnancies."

    "Thank you so much for all your information you have provided."
    (From our newest UPSC Sister: Roberta.)

    All for our own board
    I think it is a great idea.Also a reflection of the discussion that uterine cancer needs to be more recognized!Not to mention better screening is necessary. (soapbox).
  • Teresa 61
    Teresa 61 Member Posts: 84 Member

    Welcome, Ro! (& Ro's story, posted by Linda)
    Hi, Ro! This website has been hard to use lately. I think we have too many posts under a single thread and need our own Discussion Board like the Ovarian Cancer Sisters have.

    I hope this is okay. I will go ahead and post your initial email to me, so the others here can 'meet' you.

    RO's STORY:
    "Unfortunately I too have USPC Stage 3-C. Our stories are so similiar its scary."

    "I too found out I had an irregular Pap test. It was highly suggestive of adenocarcinoma. I then had and endometrial biopsy then and it was also highly suggestive of adenocarcinoma. I agree with whoever said "OUCH" on the biopsy."

    "January 5 I had a robotic hysterectomy with removal of tubes and ovaries, 20 lymph nodes were removed and had an omentum biopsy. My tumor was so small 1.5 cm by 1 cm. It had not penetrated more that 50 percent of the uterine wall. However it was in 5 of the lymph nodes and there were metastatic cells in the abdominal washing."

    "Again as you have stated the doctor said it was rare to catch it on a routine pap test. I had no symptoms at all so both my regular gynecologist and my OB GYN onocologist felt it was early stage and the hysterectomy would take care of everything. What a shock it was to get the results after surgery. Again my doctor was so suprised with the diagnosis.

    "I had my first chemo Friday, 1/30/2009. I will get the sandwich treatment of 3 chemo of Taxol/Carbo. Have a rest period of 2 -3 weeks. The I will have 5 -6 weeks of radiation, then another rest period. The another 3 chemo treatments, each 3 weeks apart. I did have a reaction to the Taxol, so my 3 hour Taxol treatment ended up to be 5 1/2 hours. But at least I was able to get the full dose of medication. Due to the reaction I got double steroids, so I am hyped up tonight. Luckily I had not reaction to the Carbo".

    "My daughter foung this site and sent it to me. I spent two days reading everything. I have so enjoyed reading all the blogs from everyone. They have been encouraging. I have tried to log on but they say I am not authorized to post anything. I wanted to post before my Chemo and tell my story. Can you give me any suggestions? I e-mailed the NCS site, but all they said was to make sure I was logged on. I thought I was logged on. I tried again tonight, but was given the same message. Any suggestions you can give me would be greatly appreciated. Thanks for letting me rabble on I guess it is a "hamster day" ( or night). My log in name will be Ro10, as I think I am the 10th person to join the USPC Sisterhood."

    "I did not have a CA -125 done yet. I asked about it at my post-op visit and he said it would probably be elevated after the surgery. I am having on with my next blood draw. I have not had a CT scan either. I will ask him when I will have my first one. He said after treatments were completed they would be every 3 months including lab and pelvic exam."

    "I am a registered nurse, so I know what all can happen. Sometimes I think that makes it scarier. I have taken care of so many cancer patients, but it sure is different when it is you dealing with the cancer. I have a great support system with my husband and family and friends. So many people care about me that it really touches my heart. My husband has been having a really hard time dealing with all of this, but he is doing better this week. I was prepared for the treatment. I think he was ready for a treatment plan but not the stage of the cancer. I was just glad I have 3 chemo and then the radiation and then 3 more chemo. Although I have to say that the chemo was not as bad as I had anticipated. I know it has just been one day, but I expected I would be nauseated through the treatment and days afterwards. I was nauseated for 9 months with both of my pregnancies."

    "Thank you so much for all your information you have provided."
    (From our newest UPSC Sister: Roberta.)

    Welcome Ro.....
    Welcome to the UPSC sisterhood Ro, the club that no one wants to belong to, wish there was a magic pill we could take and make this go away.Someday there probably will be. For now I'm happy we have found each other, it's comforting to know we are not alone in this.
    My worst days with chemo have been the evening of the third day, 4th and 5th day. Feels like I have arthritis all over my whole body, especially my feet, legs, hips and hands. Did have the hampster effect 2nd day after chemo, wow did I get alot of stuff done...
    Good Luck tomorrow Linda, I will be thinking about you and hope all goes well.
    Special prayers for your husband tonight Peggy....
  • deanna14
    deanna14 Member Posts: 732
    Teresa 61 said:

    Welcome Ro.....
    Welcome to the UPSC sisterhood Ro, the club that no one wants to belong to, wish there was a magic pill we could take and make this go away.Someday there probably will be. For now I'm happy we have found each other, it's comforting to know we are not alone in this.
    My worst days with chemo have been the evening of the third day, 4th and 5th day. Feels like I have arthritis all over my whole body, especially my feet, legs, hips and hands. Did have the hampster effect 2nd day after chemo, wow did I get alot of stuff done...
    Good Luck tomorrow Linda, I will be thinking about you and hope all goes well.
    Special prayers for your husband tonight Peggy....

    Hair
    Well... the hair loss has begun. All day today, my scalp has felt tender, like pins and needles sort of. I am sitting here surfing the web as sleep escapes me tonight. I was just running my fingers through my hair and realized it was coming out. Not a lot, but behind me in the recliner are a bunch of hairs and on my keyboard. Oh well, such is life these days.
    Teresa, I found pretty much the same thing you are saying with my 1st treatment. I felt good, energetic for a day or 2, then the aching started in the afternoon of the third day and stuck around off and on for about 3 days. I took hot baths and mild pain killers at night so I could rest. I didn't have any nausea or vomiting.
  • shortmarge
    shortmarge Member Posts: 291
    deanna14 said:

    Hair
    Well... the hair loss has begun. All day today, my scalp has felt tender, like pins and needles sort of. I am sitting here surfing the web as sleep escapes me tonight. I was just running my fingers through my hair and realized it was coming out. Not a lot, but behind me in the recliner are a bunch of hairs and on my keyboard. Oh well, such is life these days.
    Teresa, I found pretty much the same thing you are saying with my 1st treatment. I felt good, energetic for a day or 2, then the aching started in the afternoon of the third day and stuck around off and on for about 3 days. I took hot baths and mild pain killers at night so I could rest. I didn't have any nausea or vomiting.

    Some Late Nighters!
    Peggy, I'm so sorry to hear about your husbands experience. I'm sending you cyber hugs.

    RO, welcome, sending you cyber hugs too. Interesting to see how you are getting your treatment, sounds like Peggys.

    Linda, hope all goes well today. Take care of yourself. I'm all for the separate board also.

    Theresa, seems like we all have that 3 day afternoon start and then the fourth day sucks. You do get a little more tired each time though. Cyber hugs.

    Deanna, I'm with you with the Ouch hair. I have little stubbles and it hurts to put my bandana and hat on. I kept waking up last night because of it. Cyber Hugs.

    My energy is getting better but come 3:00 in the afternoon I'm ready for a nap. The bottom of my feet still bother me but all else is getting better. I feel fortunate to have not gotten the cold my husband and daughter had. Even though my hands are raw, I believe it's all about that hand washing and keeping your hands away from you face.

    You are all in my prayers.

    MIND, BODY AND SOUL!
  • pjba11
    pjba11 Member Posts: 188

    Some Late Nighters!
    Peggy, I'm so sorry to hear about your husbands experience. I'm sending you cyber hugs.

    RO, welcome, sending you cyber hugs too. Interesting to see how you are getting your treatment, sounds like Peggys.

    Linda, hope all goes well today. Take care of yourself. I'm all for the separate board also.

    Theresa, seems like we all have that 3 day afternoon start and then the fourth day sucks. You do get a little more tired each time though. Cyber hugs.

    Deanna, I'm with you with the Ouch hair. I have little stubbles and it hurts to put my bandana and hat on. I kept waking up last night because of it. Cyber Hugs.

    My energy is getting better but come 3:00 in the afternoon I'm ready for a nap. The bottom of my feet still bother me but all else is getting better. I feel fortunate to have not gotten the cold my husband and daughter had. Even though my hands are raw, I believe it's all about that hand washing and keeping your hands away from you face.

    You are all in my prayers.

    MIND, BODY AND SOUL!

    Home HOME...............HOME
    Thank you all for the support and prayers. I am home. It is not going smoothly, but if we can just hang on here for awhile it should stabilize. Then back to the hosp for surgery. It sounds as if we are all taking a day at a time toward the sun. I feel like I can not wash the smell of oncology off from me!! Our daughter is happy to have a home again. I am so glad to see a new member welcome too! It would be awesome to have our site updated so UPSC girls could find us easier. The site can be a chalange especially when not everyone knows we are here. I did not get to my scan I was 180 miles away in a different hospital. I am set to go on the 13th of Feb and planning on NED for my big fat valentine!! Sorry to hear about the hair loss pain, the neuropathy, the transfusions and the memory crap. I remember them well, but time really takes most of it away or brings it back (which way is it!!?) Can you tell I need sleep?! God bless you all .........
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    pjba11 said:

    Home HOME...............HOME
    Thank you all for the support and prayers. I am home. It is not going smoothly, but if we can just hang on here for awhile it should stabilize. Then back to the hosp for surgery. It sounds as if we are all taking a day at a time toward the sun. I feel like I can not wash the smell of oncology off from me!! Our daughter is happy to have a home again. I am so glad to see a new member welcome too! It would be awesome to have our site updated so UPSC girls could find us easier. The site can be a chalange especially when not everyone knows we are here. I did not get to my scan I was 180 miles away in a different hospital. I am set to go on the 13th of Feb and planning on NED for my big fat valentine!! Sorry to hear about the hair loss pain, the neuropathy, the transfusions and the memory crap. I remember them well, but time really takes most of it away or brings it back (which way is it!!?) Can you tell I need sleep?! God bless you all .........

    1st ever Blood Transfusion today: not scary at all!
    PEGGY: I'm glad that you are home. We're gonna want to hear this whole sordid tale when you get past it, only if you want to share. ((((Peggy))))))

    I had my bloodwork taken today and all my numbers were lousy, so I needed the blood transfusion. I only had to have 1 unit. The transfusion routine was no different than a chemo day, and I already feel better for it. If any of you need a transfusion as you get deeper into your chemo rounds, there's no need to be afraid of it. My chemo oncologist is on vacation this week, but I asked the P.A. to find out from him if it would be wise for me to plan on having bloodwork and a transfusion on my next scheduled chemo day, followed by my chemo the following day.

    But I just can't guess at what today's bloodwork numbers mean, as far as how recovered I might be in 2 weeks when it is chemo time again. Have any of you ever had your blood tested at your LOW point in the chemo cycle? Today's blood transfusion was timed to help me get through the LOWEST point in this chemo round, but this is the 1st time I've ever had bloodwork drawn at this LOW point, so I have nothing to compare it to. I'll share my 'low point' pre-transfusion bloodwork numbers with all of you in case any of you can give me some idea how I'm doing. My WBC (white) was 2.22 (chemo safe range 4 - 10.8): RBC was 2.63 (safe 3.85 - 5.15); HGB (hemoglobin) was 8.6 (safe 12 - 14.5): HCT was 24.3 (safe 36 -44.5); RDW was 20 (safe 11.5 - 15.5); Platelets 126 (safe 150 - 400). This is the one they were most concerned about: ABS SEGS .73 (safe 1.8 - 7.7). I just don't know what these numbers mean. Thanks for any insight you may have.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    deanna14 said:

    Hair
    Well... the hair loss has begun. All day today, my scalp has felt tender, like pins and needles sort of. I am sitting here surfing the web as sleep escapes me tonight. I was just running my fingers through my hair and realized it was coming out. Not a lot, but behind me in the recliner are a bunch of hairs and on my keyboard. Oh well, such is life these days.
    Teresa, I found pretty much the same thing you are saying with my 1st treatment. I felt good, energetic for a day or 2, then the aching started in the afternoon of the third day and stuck around off and on for about 3 days. I took hot baths and mild pain killers at night so I could rest. I didn't have any nausea or vomiting.

    (((((DEANNA))))))): Welcome to the Beautiful Bald Club
    Just had to offer my moral support to you, Deanna, with the rapidly impending hair loss. I know you've been dreading this since Day 1, but have probably prepared yourself for it. And you've been through so much since last fall when we started posting here, and now you have a different perspective. But even though this is small stuff in the BIG picture, I just have to give you a cyber hug because you're young and beautiful and in love, and this is your HAIR, dam* it!!! (((((((Deanna)))))))
  • Ro10
    Ro10 Member Posts: 1,561 Member
    pjba11 said:

    Home HOME...............HOME
    Thank you all for the support and prayers. I am home. It is not going smoothly, but if we can just hang on here for awhile it should stabilize. Then back to the hosp for surgery. It sounds as if we are all taking a day at a time toward the sun. I feel like I can not wash the smell of oncology off from me!! Our daughter is happy to have a home again. I am so glad to see a new member welcome too! It would be awesome to have our site updated so UPSC girls could find us easier. The site can be a chalange especially when not everyone knows we are here. I did not get to my scan I was 180 miles away in a different hospital. I am set to go on the 13th of Feb and planning on NED for my big fat valentine!! Sorry to hear about the hair loss pain, the neuropathy, the transfusions and the memory crap. I remember them well, but time really takes most of it away or brings it back (which way is it!!?) Can you tell I need sleep?! God bless you all .........

    Gald you made it home Peggy
    Hope all is better with you and your husband. Sorry your husband will have to go back to the hospital for surgery. I hope your scan comes back good on the 13th and NED will be your
    Valentine. That would be the greatest Valentine. Linda thanks for posting my e-mail. I hope I can get this figured out. Hope you are feeling better. Did you get a blood transfusion? They usually make people feel better. Deanna sorry to hear about your hair coming out. I am not really looking forward to that part of it either. But I did get a wig and some hats to help prepare me for it. Theresa hope you are feeling better, too. I am on day 4 after chemo, and have not have the achy feeling yet. Maybe it is because my treatment finished so late in the day, it has not hit me yet. Marge hope your tiredness is getting better, too. I so appreciate all the tips you all have given me. I signed up for Heavenly Hats, and Look Good Feel Good Program. The American Cancer Society has been so helpful with resources.
    A little more about me. I am 60 yrs old. We live in Illinois, but winter in Florida. So I will get my first three chemo treatments here in Florida and then return to Illinois for the radiation and 2nd round of chemo. We figured it was much nicer to recover from surgery in Florida rather than Illinois. And now with the chemo, this weather is much nicer. Thank you everyone for being there. Your encouragement and advice has been so helpful. HUGS to all of you.
  • deanna14
    deanna14 Member Posts: 732

    (((((DEANNA))))))): Welcome to the Beautiful Bald Club
    Just had to offer my moral support to you, Deanna, with the rapidly impending hair loss. I know you've been dreading this since Day 1, but have probably prepared yourself for it. And you've been through so much since last fall when we started posting here, and now you have a different perspective. But even though this is small stuff in the BIG picture, I just have to give you a cyber hug because you're young and beautiful and in love, and this is your HAIR, dam* it!!! (((((((Deanna)))))))

    Thank you.
    Thanks for understanding. I feel okay about it right now, except for the mess I am making everywhere. Now when I stand in front of the mirror with my bald head for the first time, I will probably shed a few tears. It is a small think in the big picture, but it is a huge thing in the daily fight. Mostly right now, I feel like I need a vaccuum sweeper attachment for my head. It itches, but I found a soak in the tub was comforting. I'm going to head to bed, can't stay awake.
    Glad your transfusion went well. I'll write more tomorrow. I'll check out your labs when I'm more awake. I might be able to explain some of them for you.
    Hugs of strength to all...
  • deanna14
    deanna14 Member Posts: 732

    (((((DEANNA))))))): Welcome to the Beautiful Bald Club
    Just had to offer my moral support to you, Deanna, with the rapidly impending hair loss. I know you've been dreading this since Day 1, but have probably prepared yourself for it. And you've been through so much since last fall when we started posting here, and now you have a different perspective. But even though this is small stuff in the BIG picture, I just have to give you a cyber hug because you're young and beautiful and in love, and this is your HAIR, dam* it!!! (((((((Deanna)))))))

    Sorry
    Double posted
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    deanna14 said:

    Sorry
    Double posted

    Hair Loss
    Deanna, my heart goes out to you. Such an emotional roller coaster when your hair starts coming out. My head still has the buzzed look,I look like grandma GI Jane.I wear a soft gray cap around the house.My wig is really comfortable so I always wear it when I leave the house.It won't take long for you to find what works for you.
    Marge, love your Army Mom picture, happy to hear you are feeling better.
    Linda ,happy the transfusion went well for you and made you feel better.
    Ro, happy to see your able to post now. Hope you don't get the achy bones side effect.
    Peggy, hope your doing okay, know this is a rough time for your husband, daughter and yourself.Dancing with NED on the 13th will be a great Valentine for you.....