Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm
Comments
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Well said, Ro. I ditto yourRo10 said:Now our "Sisterhood " is close to 60 members
When I joined this "Sisterhood" in January I was the 10th person to sign on with UPSC. I have Stage III-C, as do many others. Now we have close to 60 "Sisters" who have signed on for themselves or family members. I know I have found this site to be so helpful to me as I go on this journey. I am amazed at the strength and courage that so many of our "Sisters" have displayed. I am touched by the caring words that I have received and reading the encouragement and helpful suggestions given to others. We have had many different treatment plans, but basically the same drugs and radiation. Some are finished with their treatments, and others are closing in on the end of their treatments. We have had many who are dancing with "NED". I hope to join that dance with others. Thank you everyone for everything, and may we continue to be an encouragement to others who find themselves on this difficult journey. BIG HUGS to all of you.
Well said, Ro. I ditto your comments.
Mary Ann0 -
60 Strong & getting strongerRo10 said:Now our "Sisterhood " is close to 60 members
When I joined this "Sisterhood" in January I was the 10th person to sign on with UPSC. I have Stage III-C, as do many others. Now we have close to 60 "Sisters" who have signed on for themselves or family members. I know I have found this site to be so helpful to me as I go on this journey. I am amazed at the strength and courage that so many of our "Sisters" have displayed. I am touched by the caring words that I have received and reading the encouragement and helpful suggestions given to others. We have had many different treatment plans, but basically the same drugs and radiation. Some are finished with their treatments, and others are closing in on the end of their treatments. We have had many who are dancing with "NED". I hope to join that dance with others. Thank you everyone for everything, and may we continue to be an encouragement to others who find themselves on this difficult journey. BIG HUGS to all of you.
It is good that 60 women have found this discussion board (too bad it is necessary tho). When I was diagnosed with UPSC, my gyn/onc told me what I had was very rare. At one appointment she said something about my cancer being a 'oddball'. I hated that! It makes you feeling so alone. Which is why I was so happy to find this site. I am not an oddball here. Just one of the gang. Keep the faith!0 -
Roll Call
Hello, I am Diane Smail from Yorktown Virginia. I joined the group in April but had a reaction to taxol and the first four treatments took up all my time. We were also renovating part of our house when all this hit when I had the reaction so everything was wild. My Gyn/Onc did develop a good supportive regimen for me (lots of steroids, pain meds, tranquilizers, etc) and I was able to keep up taxol/carbo recommended doses. I get #5 this week.
I think I am stage I but it's close to a II and I had endometroid with a 2 cm serous papillary cancer. My nodes were negative but washings positive. I will also have radiation.
I had breast cancer almost ten years ago chemo, radiation and lumpectomy and have done well. I did take tamoxifen and I think that is what caused this cancer. Personally I would get a hysterectomy if I had to take tamoxifen again. Live, learn and pass it on. I think I have grown since my last treatment but still struggle with fears and anxieties. I did adjust to the baldness better. I love to walk into chemo with my wig, dressed in a cute outfit,and smiling. It surprises the nurses. Then I salute them and tell them I am reporting for duty. I appreciate all this group has to offer. My dream would be to have a site for UPSC like breastcancer.org. They have guest speakers, etc. Research is posted. It's a wonderful site. Check it out. Sometimes dreams come true!0 -
HiRo10 said:Sorry Pat from MN to hear your news
How difficult it must be for you since you have been through so much all ready. Sorry to hear about your diagnosis and the new tumor. I'll add you to my prayer list and hope that the treatment plan helps you. Hope you find this site helpful. HUGS to you.
My name is Karen. I am 66 years old and was diagnosed a year ago with Endometrial Cancer, adenocarcinoma, Stage 3A,Grade II/III. I had a complete hysterectomy with the DaVinci Robot and had a very speedy recovery. A month later I started my external pelvic radiation treatments and had 30. I found that very wearying. A month after completing radiation I started chemo and was scheduled for 7 treatments of Carboplatin and Taxol. However, I was having an increasingly difficult time keeping my white count up in spite of having Neulasta 24 hours after each chemo. In addition, my red count was falling to the point I had 2 units of packed cells, and my platelets just kept dropping (down to 20). The neuropathy in my feet was getting worse and so after 5 treatments my gyn oncologist decided that my body had probably had about as much as it could handle and chemo ended!
At this point, I am feeling SOOOOO much better, my hair is growing in (VERY curly), and I am working on getting my strength back…taking a movement class and have started Yoga.
I originally signed up on this website a year ago but somehow in all of the overwhelming bombardment related to treatment, appointments, etc. I "dropped off"... Now that I have more time and energy I have reconnected...and it is obvious I have missed a wealth of information and sharing!! There are so many knowledgeable, helpful women here who so graciously share their wisdom! You are obviously a very warm, caring group!0 -
roll callSongflower said:Roll Call
Hello, I am Diane Smail from Yorktown Virginia. I joined the group in April but had a reaction to taxol and the first four treatments took up all my time. We were also renovating part of our house when all this hit when I had the reaction so everything was wild. My Gyn/Onc did develop a good supportive regimen for me (lots of steroids, pain meds, tranquilizers, etc) and I was able to keep up taxol/carbo recommended doses. I get #5 this week.
I think I am stage I but it's close to a II and I had endometroid with a 2 cm serous papillary cancer. My nodes were negative but washings positive. I will also have radiation.
I had breast cancer almost ten years ago chemo, radiation and lumpectomy and have done well. I did take tamoxifen and I think that is what caused this cancer. Personally I would get a hysterectomy if I had to take tamoxifen again. Live, learn and pass it on. I think I have grown since my last treatment but still struggle with fears and anxieties. I did adjust to the baldness better. I love to walk into chemo with my wig, dressed in a cute outfit,and smiling. It surprises the nurses. Then I salute them and tell them I am reporting for duty. I appreciate all this group has to offer. My dream would be to have a site for UPSC like breastcancer.org. They have guest speakers, etc. Research is posted. It's a wonderful site. Check it out. Sometimes dreams come true!
Hi all,
I've been a lurker for a while but now have posted so I thought I'd log in on this great idea called the Roll Call!
I am 45 years of age and have endometrial adenocarcinoma of the uterus (stage 3), ovaries (stage 1), and cervix (stage 1). There was also a little clear cell in one of the ovaries. Abdominal wash was positive and lymph nodes weren't sampled as I didn't have an obgyn/onc do my surgery. My gyno did the surgery himself and didnt tell me about the obgyn/onc until after my surg. The ob/onc opted to not go back and take out the lymph nodes. Oh, my CT and pet CT were clear.
Treatment has been 6 rounds of carbo/taxol 3 weeks apart. I'm finished with that and now I will be undergoing 25 rounds of radiation and 3 brachys.
You ladies all sound so wonderful and it's been a pleasure to read your stories and see your support of each other. I hope we're all around for a long, long, long time!0 -
welcome LisaLisa 00 said:roll call
Hi all,
I've been a lurker for a while but now have posted so I thought I'd log in on this great idea called the Roll Call!
I am 45 years of age and have endometrial adenocarcinoma of the uterus (stage 3), ovaries (stage 1), and cervix (stage 1). There was also a little clear cell in one of the ovaries. Abdominal wash was positive and lymph nodes weren't sampled as I didn't have an obgyn/onc do my surgery. My gyno did the surgery himself and didnt tell me about the obgyn/onc until after my surg. The ob/onc opted to not go back and take out the lymph nodes. Oh, my CT and pet CT were clear.
Treatment has been 6 rounds of carbo/taxol 3 weeks apart. I'm finished with that and now I will be undergoing 25 rounds of radiation and 3 brachys.
You ladies all sound so wonderful and it's been a pleasure to read your stories and see your support of each other. I hope we're all around for a long, long, long time!
Hi Lisa,
Glad you joined us! It sounds like you are getting the aggressive protocol and good news from your PET and CT. Sounds real positive to me. You sound very positive.
Best wishes to you. Mary Ann0 -
New here, not new to cancer
Hello! I was diagnosed last August 7th with uterine cancer at 46 years old. I got my diagnosis on a Thursday, and was having my robot surgery the next Wednesday. I felt so fortunate that I didn't have to linger wondering and waiting too long.
My doctor removed everything including "a little bit of the vagina" as he put it lol. My ovaries and cervix were clean (as was the "little big of vagina") It was found in 2 of the 47 or so (I don't remember now) lymph nodes that were checked.
I did the sandwich of three rounds of chemo (I was in the hospital for the 4 days of treatment - does/did any one else do this? I found it to be so difficult to be in the hospital). Three internal rads and then 25 cycles of of external radiation, finishing up with my last three treatments.
My doctor permitted me to do the last round in the clinic at the end of March instead of the hospital since I'd tolerated the chemo so well (and I promised to drink tons of water!) I was so grateful.
So happy to start to have some hair back! I felt this was very private to me and only chose to tell very close friends and family - so I'm still sporting a wig when I go out in the summer weather - these things are HOT!
I go for my first 3 month check July 20th. I feel so great and healthy, but it's hard not to be a bit freaked out that it's back somewhere. My CA 125 number was 4 in April, it's not going to take much for it to double which is when the red flag goes up!
Nice to meet all of you!
-Kat0 -
Welcome Katrinka 123Katrinka123 said:New here, not new to cancer
Hello! I was diagnosed last August 7th with uterine cancer at 46 years old. I got my diagnosis on a Thursday, and was having my robot surgery the next Wednesday. I felt so fortunate that I didn't have to linger wondering and waiting too long.
My doctor removed everything including "a little bit of the vagina" as he put it lol. My ovaries and cervix were clean (as was the "little big of vagina") It was found in 2 of the 47 or so (I don't remember now) lymph nodes that were checked.
I did the sandwich of three rounds of chemo (I was in the hospital for the 4 days of treatment - does/did any one else do this? I found it to be so difficult to be in the hospital). Three internal rads and then 25 cycles of of external radiation, finishing up with my last three treatments.
My doctor permitted me to do the last round in the clinic at the end of March instead of the hospital since I'd tolerated the chemo so well (and I promised to drink tons of water!) I was so grateful.
So happy to start to have some hair back! I felt this was very private to me and only chose to tell very close friends and family - so I'm still sporting a wig when I go out in the summer weather - these things are HOT!
I go for my first 3 month check July 20th. I feel so great and healthy, but it's hard not to be a bit freaked out that it's back somewhere. My CA 125 number was 4 in April, it's not going to take much for it to double which is when the red flag goes up!
Nice to meet all of you!
-Kat
Welcome to this site. I am sorry to hear your diagnosis, but I have found positive support from everyone here. I am happy for you finishing your treatments. What a relief! I am glad that you are feeling great and hope for positive news for you on your 3 month check up. I understand how you feel with the fear that your cancer will return somewhere else. I try to think positve and stay busy, but it seems to be always in the back of my mind. I take one day at a time. I hope that you find peace and enjoy your summer.
Jean0 -
don't freak out if CA 125 goes up a bitKatrinka123 said:New here, not new to cancer
Hello! I was diagnosed last August 7th with uterine cancer at 46 years old. I got my diagnosis on a Thursday, and was having my robot surgery the next Wednesday. I felt so fortunate that I didn't have to linger wondering and waiting too long.
My doctor removed everything including "a little bit of the vagina" as he put it lol. My ovaries and cervix were clean (as was the "little big of vagina") It was found in 2 of the 47 or so (I don't remember now) lymph nodes that were checked.
I did the sandwich of three rounds of chemo (I was in the hospital for the 4 days of treatment - does/did any one else do this? I found it to be so difficult to be in the hospital). Three internal rads and then 25 cycles of of external radiation, finishing up with my last three treatments.
My doctor permitted me to do the last round in the clinic at the end of March instead of the hospital since I'd tolerated the chemo so well (and I promised to drink tons of water!) I was so grateful.
So happy to start to have some hair back! I felt this was very private to me and only chose to tell very close friends and family - so I'm still sporting a wig when I go out in the summer weather - these things are HOT!
I go for my first 3 month check July 20th. I feel so great and healthy, but it's hard not to be a bit freaked out that it's back somewhere. My CA 125 number was 4 in April, it's not going to take much for it to double which is when the red flag goes up!
Nice to meet all of you!
-Kat
Hi Katrinka,
Great CA125 number - 4!!! terrific. I got down to an 8. My dr. said "don't freak out if it goes to 11" - well it sure did next time but now back down to an 8 without any more treatment. So I imagine it vacillates a bit and I think normal is anything below 35 or so. We have a bit of wiggle room.
I just had my 2nd post treatment check-up and was told the WE are the best indicators if there is something amiss - any change in intensity, duration, or frequency of symptoms. Any change for 2 weeks is a concern for us.
Best wishes. Mary Ann0 -
Roll call from San Jose,CA
Hello My name is Kathy, 57 with endometrial adenocarcinoma Stage 1, Grad 2-3. Had the DaVinci surgery last Mon at ElCamino Hspital in Mountain View. My Doc is reccomending taxol/carbo..for 3 cycles as a precaution. Am scared and nervous about side effects and having to work as an LVN during treatment in an Internist office. Scared about being exposed to something while being immunosuppressed and nervous about wearing a wig. This is a small office and my boss is not very supportive. Not sure where I will have my treatment. Either at Stanford or near the hospital I had surgery. Have my followup appointment next Mon. To make life more complicated, last year my husband was diagnosed with Stage 4 colon cancer..adenocarcinoma also. Did very well with chemo and surgery, but had return of cancer in his liver and new spots in his lung I have found this site extremely helpful and supportive, with some extremely educated, caring women. Thank you all for being there for us struggling.0 -
Thank you for yourdaisy366 said:don't freak out if CA 125 goes up a bit
Hi Katrinka,
Great CA125 number - 4!!! terrific. I got down to an 8. My dr. said "don't freak out if it goes to 11" - well it sure did next time but now back down to an 8 without any more treatment. So I imagine it vacillates a bit and I think normal is anything below 35 or so. We have a bit of wiggle room.
I just had my 2nd post treatment check-up and was told the WE are the best indicators if there is something amiss - any change in intensity, duration, or frequency of symptoms. Any change for 2 weeks is a concern for us.
Best wishes. Mary Ann
Thank you for your reassuring, common sense words Mary Ann! I feel really great - I've been back to using my elliptical after being sedentary for over a year. Have a good energy level, have no symptoms, see myself building up and working harder on my machine - and yet I have moments of such panic when I think about this upcoming appointment on Monday. I keep telling myself I need to get a grip, and I can't get like this each time a three month check comes along! Trying to keep only positive thoughts until I am told otherwise.
-Kat0 -
Hi Kathy! I'm sorry to hearkathybd said:Roll call from San Jose,CA
Hello My name is Kathy, 57 with endometrial adenocarcinoma Stage 1, Grad 2-3. Had the DaVinci surgery last Mon at ElCamino Hspital in Mountain View. My Doc is reccomending taxol/carbo..for 3 cycles as a precaution. Am scared and nervous about side effects and having to work as an LVN during treatment in an Internist office. Scared about being exposed to something while being immunosuppressed and nervous about wearing a wig. This is a small office and my boss is not very supportive. Not sure where I will have my treatment. Either at Stanford or near the hospital I had surgery. Have my followup appointment next Mon. To make life more complicated, last year my husband was diagnosed with Stage 4 colon cancer..adenocarcinoma also. Did very well with chemo and surgery, but had return of cancer in his liver and new spots in his lung I have found this site extremely helpful and supportive, with some extremely educated, caring women. Thank you all for being there for us struggling.
Hi Kathy! I'm sorry to hear that any employer, least of all an internist would not be supportive of you during treatments for cancer. That guy (or gal) needs a good shaking. You are obviously not new at all of this (I'm sorry for that). You have so much on your plate right now trying to figure out what's next. Take one step at a time, and worry about your boss later. I hope you will get good advise along the way on how to handle working while your counts are at their lowest. (Perhaps your boss will come around when it's time).
Speaking as someone who has not dealt with the hair loss all that well, there are some great looking wigs! I've had numerous compliments from people on my "new hairstyle" - they are completely unaware that I am wearing a wig!
Wishing both you and your dh all good thoughts!
-Kat0 -
Thanks Kat for your kindKatrinka123 said:Hi Kathy! I'm sorry to hear
Hi Kathy! I'm sorry to hear that any employer, least of all an internist would not be supportive of you during treatments for cancer. That guy (or gal) needs a good shaking. You are obviously not new at all of this (I'm sorry for that). You have so much on your plate right now trying to figure out what's next. Take one step at a time, and worry about your boss later. I hope you will get good advise along the way on how to handle working while your counts are at their lowest. (Perhaps your boss will come around when it's time).
Speaking as someone who has not dealt with the hair loss all that well, there are some great looking wigs! I've had numerous compliments from people on my "new hairstyle" - they are completely unaware that I am wearing a wig!
Wishing both you and your dh all good thoughts!
-Kat
Thanks Kat for your kind words. I keep hearing wigs are so hot, and I already get hot easily. More importantly, I need to work and am hoping the chemo will go smoothly. Will take your great advice and just enjoy each day we are given and try to live it to the fullest.
-Kathy0 -
Under "normal" conditions Ikathybd said:Thanks Kat for your kind
Thanks Kat for your kind words. I keep hearing wigs are so hot, and I already get hot easily. More importantly, I need to work and am hoping the chemo will go smoothly. Will take your great advice and just enjoy each day we are given and try to live it to the fullest.
-Kathy
Under "normal" conditions I don't feel like my wig is hot. Outside in the summer heat - I'd have to say yes! I'd like to whip that thing off and let my head breathe! lol In an office atmosphere I'd like to think you'll be ok.
Hoping your treatment will leave you feeling well enough to keep your work schedule!
-Kat0 -
just got the word
I am not sure if I am replying to this right.. My name is Danielle I am a 30 year old single mother of four. I was diagnosed with uterine cancer and will have a hystrectomy (if i spelled it right) august 4th0 -
So glad you connected....danielleambr said:just got the word
I am not sure if I am replying to this right.. My name is Danielle I am a 30 year old single mother of four. I was diagnosed with uterine cancer and will have a hystrectomy (if i spelled it right) august 4th
Danielle
Am so sorry to hear about your diagnosis. Know you have a full plate with also having 4 children to care for. Am so glad you connected with this site. There are so many knowledgeable and caring women who are here to share info and support each other. Ask lots of questions. Are you having a gyn oncologist do your surgery?
Best to you! Karen0 -
Danielle welcome to this sitedanielleambr said:just got the word
I am not sure if I am replying to this right.. My name is Danielle I am a 30 year old single mother of four. I was diagnosed with uterine cancer and will have a hystrectomy (if i spelled it right) august 4th
Good luck with your surgery. Sorry to hear about your diagnosis. I hope you are having an gyn/onocologist do you surgery, so proper staging can be done. That is so important so you know what you are dealing will. I hope all goes well for you. Being a single mother of four has to be enough of a challenge for you without going through all of this. I wish you the best. Feel free to vent your feeling and ask all the questions you may have. In peace and caring. HUGS to you.0 -
Welcome Kat to the siteKatrinka123 said:New here, not new to cancer
Hello! I was diagnosed last August 7th with uterine cancer at 46 years old. I got my diagnosis on a Thursday, and was having my robot surgery the next Wednesday. I felt so fortunate that I didn't have to linger wondering and waiting too long.
My doctor removed everything including "a little bit of the vagina" as he put it lol. My ovaries and cervix were clean (as was the "little big of vagina") It was found in 2 of the 47 or so (I don't remember now) lymph nodes that were checked.
I did the sandwich of three rounds of chemo (I was in the hospital for the 4 days of treatment - does/did any one else do this? I found it to be so difficult to be in the hospital). Three internal rads and then 25 cycles of of external radiation, finishing up with my last three treatments.
My doctor permitted me to do the last round in the clinic at the end of March instead of the hospital since I'd tolerated the chemo so well (and I promised to drink tons of water!) I was so grateful.
So happy to start to have some hair back! I felt this was very private to me and only chose to tell very close friends and family - so I'm still sporting a wig when I go out in the summer weather - these things are HOT!
I go for my first 3 month check July 20th. I feel so great and healthy, but it's hard not to be a bit freaked out that it's back somewhere. My CA 125 number was 4 in April, it's not going to take much for it to double which is when the red flag goes up!
Nice to meet all of you!
-Kat
Sorry for your diagnosis, but glad you are doing so well with your treatents. I too had the robotic surgery and had the sandwich treatments. I did well with the first three treatments. Had my external and internal radiation and had some nausea with the treatments, but have a sensitive stomach. I had chemo number 4 and my white blood cells count dropped and I had an infection and ended up in the hospital for a week with IV antibiotics. Then 12 more days of antibiotics at home. Finally was able to get chemo #5 yesterday, and hope it will be uneventful like the first 3 were. I know what you mean about the wig being hot. I pretty only wear mine when I go to church, otherwise I wear a ball cap or newsboy cap when I go out. Good luck with you checkup on the 20th. I hope all goes well for you. In peace and caring. HUGS to you.0 -
Kathy welcome to the sitekathybd said:Roll call from San Jose,CA
Hello My name is Kathy, 57 with endometrial adenocarcinoma Stage 1, Grad 2-3. Had the DaVinci surgery last Mon at ElCamino Hspital in Mountain View. My Doc is reccomending taxol/carbo..for 3 cycles as a precaution. Am scared and nervous about side effects and having to work as an LVN during treatment in an Internist office. Scared about being exposed to something while being immunosuppressed and nervous about wearing a wig. This is a small office and my boss is not very supportive. Not sure where I will have my treatment. Either at Stanford or near the hospital I had surgery. Have my followup appointment next Mon. To make life more complicated, last year my husband was diagnosed with Stage 4 colon cancer..adenocarcinoma also. Did very well with chemo and surgery, but had return of cancer in his liver and new spots in his lung I have found this site extremely helpful and supportive, with some extremely educated, caring women. Thank you all for being there for us struggling.
Sorry to hear of your diagnosis, but glad you have only stage 1. Glad you will only have to have 3 cycles of the Taxol/carbo treatments. I can understand you being scared about the side effects. I think we all worried about them and found out they were not as bad as we had anticipated. The fear of the unknown always seems to be worse that what actually happens. They do such a good job with pre-medications and post medications that the side effects are minimal. Of course you won't really believe all of this until you go through it yourself. That's all natural. Sorry you have fears of being exposed to to patients coming in to see the doctor. I am an RN so I know what you mean. What about a Family Medical Leave, can you qualify for that while you get your chemo? Or any type of disability for that time period? You certainly have you hands full with your husband's diagnosis to. You will be added to my prayer list. Good luck with your treatment, and feel free to vent any frustrations or fears and ask all the questions you want. Someone will have some answers for you. In peace and caring. HUGS to you.0 -
ROLL CALL
MY NAME IS JEN ILENE AND AM 30 YEARS OLD, DIAGNOSED WITH STAGE 1B UTERINE ADENOCARCINOMA. IM FROM SOUTH TEXAS, NOT A LOT OF SUPPORT GROUPS HERE. WAS DIAGNOSED OCT 16,2008 AND HAD TOTAL ABD HYSTERECTOMY AND RIGHT OVARY REMOVAL(PCD)AND BILATERAL FALLOPIAN TUBE REMOVAL(SEVERE ENDOMETRIOSIS)IN LATE JANUARY 2009. MY CA-125 CAME OUT ALITTLE HIGH AND FOUND POSSIBLE REOCCURANCE DURING HYSTOSCOPY LAST FRIDAY. NOW TRYING TO PREPARE FOR 4 WEEK ROUND OF EXT.RAD AND POSSIBLE SIDE EFFECTS. HOW BAD IS IT? IS THERE ANY SUPPORT SYSTEM SET UP FOR PEOPLE MY AGE? PLEASE CONTACT (JEN.ILENE.G@GMAIL.COM) OR ON THIS POST. THANKS0
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