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Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We have so many wonderful new people posting and I have been so busy with treatments and trying to keep my head above water at work. I am afraid I haven't really welcomed everyone (I APOLOGIZE; you can't possibly KNOW how glad I am that you all have found us!), and I am having trouble keeping everyone straight in my poor chemo-brained head.

So could you each just post under this thread with the name you'd like us to call you, what your cancer diagnosis is (if you have it yet), and where you are in your treatment. And if you want to say where you live, that would be cool too. I'll start it off:

Linda Procopio:
Stage III-c UPSC, radical hysterectomy 10/10/09; just finished 6 rounds of carboplatin/paciltaxol (sp?); with 8 weeks of radiation coming up after I recover from the chemo. I live in central Pennsylvania.

Rribbit
Posts: 9
Joined: Apr 2009

Hi Kelly and all - My name is Paige and I'm 38. I was diagnosed Jan. 09 after hysterectomy for fibroids. Unfortunately - due to the surgery plan we had for fibroids, they left in my ovaries, tubes and of course nodes, not knowing the cancer was there. Initially they thought I was 1C with about 65% myometrial invasion and grade 3 hybrid histologic type of large cell/neuroendocrine(small cell) cancer. But I had a PET scan in March that revealed spread to 1 pelvic, 1 paraaortic and 1 portal lymph node (still can't figure out exactly where that is, but have been told it's up high behind the liver). So they now consider me stage 3C at a minimum and probably stage 4. All other organs are clear thus far. Started Cisplatin/Etoposide chemo in Feb and just finished 3rd round last week w/3 rounds to go. Will repeat the PET scan next week to see if chemo is working and determine next steps for radiation. Plan is for full abdominal radiation for 6 weeks in the middle of chemo. However I am scared about the long-term side effects I see some of you having from this :(

Drs believe my portal node is a metastasis because it measures 3 cm. I am told that the portal node would be a highly risky surgery to do to go in and remove and also near impossible to radiate so chemo is the primary hope to reduce/eliminate it.

So far my only side effects have been low white blood counts and random chest heaviness. Kelly did the Neulasta work for you? did you have any side effects from it? My Dr told me it might not work as well for me since I'm doing 3 days in a row every 3 weeks and it works better for 1 day plans....but I don't want to delay treatment. Apparently the neuroendocrine part of my cancer typically recurs within 2 years, so I'm willing to blow a nuke bomb off in my body if it will help prevent recurrance! From what I understand, once it recurs - there's not much more that can be done? But just chemo that can buy you a few months of time? Anyone have any knowledge or experience otherwise?

irishohiogirl's picture
irishohiogirl
Posts: 10
Joined: Oct 2007

Hi Paige I am sorry for the delayed response I have been away from a computer for a few weeks. The Neulasta frequently couldn't get me up to par. I had several delays in treatment and was very frustrated. After the Neulasta I had bone pain in all of my large bones about 12 hours after the injection that lasted for about 3 days. My doc had given me a prescription for the pain that worked just grand and I was able to accomplish all of my daily activities. After I started drinking Echinacea tea by Yogi I noticed my ANC go up and between the Neulasta and the tea was able to get back on track. I would ask your doc if you can drink Echinacea tea just to be on safe side but it appeared to help me. I totally understand your thinking about nuking the bugger into oblivion...that will be my prayer for you:) Take good care of yourself.
Big Hugs Kelly

tbsjewels's picture
tbsjewels
Posts: 7
Joined: Jul 2008

Hi, my name is Terry and I hail from a small town just outside of St. Louis, Mo. I recieved my treatments at Siteman Cancer Center. I was originally diagnosed with Endometrial Cancer following a hysterectomy for other reasons in 2002. It was very small and early stages and I recieved no further treatment, just followup, 3 months first year and then 6mon. for next 4 years. I was just shy of 5 yrs. when I had a reoccurrance which involved a 15cm. tumor wrapped around my transverse colon. After my surgery in Aug. 07 I did the standard 6 treatments with Taxol/Carboplatin. Currently I'm 1 year and 2 months since the end of treatment and have been NED ever since. It's pretty scary since it came back almost 5 yrs. after my initial diagnosis. Hopefully the chemo got anything leftover and it won't return again.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Hi I am Janet
I am a 52 year old physician who had radical hysterectomy Feb 25, and since 2 pelvic nodes positive and washings positive, I am stage 3c Grade 1
I started Chemo on March 25th with Carbo/taxol, I will recieve a total of 6 rounds.
I start brachy therapy on April 17th for 3 weekly and then External beam radiation on May 11th for 25 rounds

I had a PET/ctscan on March 25th because my doc thought this was all unusual for grade 1 tumour, and it was negative.

I am not certain what UPSC means but my tumour is endometrioid

janet

deanna14
Posts: 734
Joined: Oct 2008

So sorry that you are going through all of this, but glad that you found this site. We have a really supportive group of ladies here. Your treatment sounds similar to that of most of us here. UPSC is uterine papillary serous carcinoma, it tends to be more aggressive and recurrent than endometriod uterine cancer. Thank goodness that yours is endometriod, I think the cure rate is pretty high for your type of cancer. We are all in various stages of recovery and treatment. It really helps to have these ladies as a sounding board, I hope you find it helpful also. Feel free to ask any questions, we are all pretty open and supportive. I hope you are feeling well after your first chemo treatment.
Take care... hugs,
Deanna

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

Mary Ann, UPSC, diagnosed February 2006. IIIa I think. Anyway III. Nothing in lymph nodes, a few rare cells in the wash. Surgery at California Pacific Medical Center, SF. Chemo at San Franisco Oncology, which has offices adjacent to CPMC. Carboplatin and taxol, Summer 2006, ending Sept 15, 2006. Hair presentable in December 2006. Recurrence discovered July 2008. Node found in omentum during surgery and nodes on base of lungs during CT scan. Smaller doses of taxol and carboplatin due to kidney problems. December 2008 through March 17, 2009. Due to start topotecan, used for recurrent cancer, about the end of May 2009, once a week. Never any discomfort from the disease itself, discomfort comes from treatment and kidney problem treatment. 73 years old. Never had radiation. retired. My friend in the picture is Lobo. You can call me Mary Ann on San Francisco Bay, or Mary Ann On The Bay, or Mary Ann SF (shorter) or anything to distinguish me from early member Mary Ann/Daisy.

Ro10's picture
Ro10
Posts: 1428
Joined: Jan 2009

I appreciate hearing your history. I looked up the topotecan. I see it has been used for ovarian and small cell lung cancer treatments. Will you be taking it as a pill, or are they giving it IV? I pray for success for you. You said they found a node in the omentum during surgery in July. What kind of surgery did you have then? I hope your kidneys tolerate this new medication. Lobo looks like a great friend. HUGS to you.

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

No topotecan. More Taxol/carboplatin. I'll postthat soon. Two surgeries in July, one to fix my right uterer (between kidney and bladder) and then surgery to unkink my intestine when it became kinked after the first surgery. Nodule found during second surgery and tested. But kidney function seems ok now. Mary Ann on San Francisco Bay

cc1212
Posts: 3
Joined: Aug 2009

Hi Mary Ann. We seem to be the closest match: I live in Santa Cruz, am 68 yrs old, have UPSC4b, and am being treated at Stanford. Labor Day 2005 I had an emergency hernia operation and the path report said I had uterine cancer. Had a total hysterectomy in Oct. The gyn onc surgeon saw no sign of cancer, but the path report said I had UPSC4b (since I was feeling great and my CA125 was 16, it was quite a shock). Starting Halloween I had 7 rounds of cisplatin, taxol, adriamycin and neulasta. After the first week I had no side effects from the treatment. CA125 went down to 3. Eighteen months later the CA125 was 295 and the CT scan showed a few tumors and lymph nodes. My gyn onc and a gyn rad decided to operate and radiate at the table on Valentine's Day 2007. They took one look, saw tumors and oddities attached all over the abdominal cavity and sewed me up. Took 4 rounds of topotecan with no lowering of CA125 and no side effects. In June (Friday the 13th) I started six rounds of carboplatin and taxol. No side effects and CA125 went down to 13. On Inauguration Day 2009 I had another emergency hernia operation (my bowels had herniated and kinked). The general surgeon saw no signs of cancer. In June 2009 my CA125 was 300 and the CT scan showed tumors and nodes. Monday I'm starting carboplatin and doxil--a "coated" version of adriamycin that doesn't wreck your heart. I'm curious to learn how they "coat" an IV fluid! Ran out of room! Cecile

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Marie Boyer diagnosed 5/08 with Stage 1A UPSC; 8 cycles of Carbo/Taxol; no radiation; of course complete hysterectomy; coming up to my second 3 month check up in June at Kapiolani Med Center for Women and Children, Honolulu; anxiety starting to build; almost burst into rears yesterday making arrangements with insurance company for transportation to Oahu from the Big Island where I live; thanks for all of you; I read posts almost daily and know I'm not alone in this journey; wish I could offer some "support" more frequently but I feel a reluctance to add my two cents sometimes; probably because I'm a nurse and feel there is SOOOO much conflicting information out there; I don't want to add to the confusion; really want to settle into my individual personna for awhile yet. THANKS to all of you for sharing.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

As sad as the reason for our 'sisterhood' here is, we still warmly welcome you to the support and friendship of this community! Please tell us more about what precipitated the infections and if you will be having further treatments, and anything else you care to share! BIG HUGS!

Auntie Shelly
Posts: 10
Joined: May 2009

Hi. My name is Shelly. I was diagnosed with stage 1B uterine cancer in Jan 09 and had a abdominal hysterectomy also removing lymph nodes and ovaries in Feb. 09 @ Hoag, Newport Bch, CA. Currently in the 3rd month of chemo (carbo/taxol) 3 times a month for six months and once a month 9 months after. I am also having to get both shots for red blood cells and white blood cells. (sorry I forgot what their names are)

I have had 2 bladder infections so far and am not getting very much sleep. Most nights I wake up every 1 to 1 1/2 hours. I am very tired all the time and am not sure what is due to the chemo. After trying to treat the bladder problem my oncologist has requested a referral to a urologist but OMG they are hard people to get to see!

My family and friends are very supportive but I am really getting tired of being tired all the time! Has anyone else had this problem and what did you do?

Thanks!

deanna14
Posts: 734
Joined: Oct 2008

I can relate to the up every 1 to 1.5 hours during the night. I have nights like that and have had a couple UTI's. It usually turns out that I have a UTI when I get up that many times during the night. I also have had radiation and am being told that I have decreased bladder capacity as a side effect of the radiation. I just take a lot of naps when I feel tired.
That sounds like a pretty tough chemo regime. What cell type of cancer did you have? A lot of us here were diagnosed uterine papillary serous carcinoma. I would imagine that you are very tired if you are receiving carbo/taxol 3 times a month. I am getting ready to have my 6th and last carbo/taxol treatment. Mine were every 21 days, but I have had a couple of postponements due to low blood counts.
I have a lot of days when I am tired of being tired. Like I said, I rest when my body tells me to rest and sometime, if there are things I want to do, I push through it. Good luck and God bless you.

Auntie Shelly
Posts: 10
Joined: May 2009

I try to take naps all the time but all the laying around is really taking a toll on my stamina! I try to get a lot of things done on Saturday, the day after chemo because of the steriod rush I get. I only get the carbo once a month but I have noticed that I feel worse after that round of treatment.

My pathology report says endometrial adenocarcinoma with serous features, FIGO grade 3, nuclear grade 3.

Thanks for the reply. I have really been getting down lately and it helps to know someone else can relate!

* Thanks to the nurses and hospital staff @ Hoag. You guys are awesome!

Ro10's picture
Ro10
Posts: 1428
Joined: Jan 2009

Sorry to hear you are so tired all of the time. You really are on a different chemo schedule than most of us have been on. Most of us have received our chemo every 21 days if the blood work is okay. I am one of those who had 3 chemo treatments and then radiation and then will finish with 3 more chemo treatments. I will have my internal radiation on Tuesday.

Sorry to hear about your bladder infections, too. That is miserable when you can't get good rest at night. Have you tried drinking cranberry juice? that is supposed to make the urine more acid to reduce the chance of infections. I am sure the urologist will have some "magic" pills to make you feel better.

Glad to hear you have a supportive family and group of friends. Hope you find this site helpful too. Good luck with your treatments.

Auntie Shelly
Posts: 10
Joined: May 2009

I had my third chemo treatment of the third month today and was so exhausted. It helped to go to the chemo lounge and get to compare notes with my fellow "loungers". A lot of them are on different treatment schedules than I am too. Today I was told that I may need a blood transfusion. I guess that may explain some of the exhaustion but I am kind of nervous about it.

I bought some cranberry pills to take and am now on the sixth medication for the UTI. The meds have been helping but I am still getting up all the time most nights. I hope this last one works.

It really helps to have people to communicate with. I really appreciate the comments.

Good luck to everyone!

* thanks to Karen, my chemo nurse who has to listen to all my complaining!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

The Grade 3 cells probably accounts for the aggressive chemo schedule, but how wonderful that you caught your cancer when it was still in Stage 1! I imagine they are being so aggressive because you have such an excellent opportunity for a cure, and your oncologists are determined to make that happen. I had my chemo (Carbo/taxol) like Deanna's, every 3 weeks. Sounds like they are 'fractionating' your 1 chemo drug (giving 1/3 dose every week instead of full dose every 3 weeks) to ease its affect on your body by spreading it out. I met a few women with breast cancer where they used that strategy.

I just got back from radiation, and just had my 17th of 28 scheduled rounds of external pelvic IMRT radiation. I went out for pancakes and an omelette after treatment and made the mistake of having chopped tomatoes in my cheese omelette, which I KNOW I shouldn't have. Now I'll have to stay in the next few hours close to a toilet, as any fresh veggies are giving me loose bowels at this stage in my radiation. But the upset stomach never seems to affect my appetite!

Hang in there, ladies! A 3-day weekend & even an extra day off of treatment! Enjoy!

jen2swt
Posts: 3
Joined: May 2009

My name is Jen, I was just recently diagnosed with Uterine Cancer. I don't know all the terminology just yet. I know that is a grade 1, stage I won't know til after my surgery which is next week the 27th. I am having tubes, lymph nodes, ovaries, tubes and uterus removed. I guess that is a total? This is such a blur to me and a shock. I have been through so much the past two weeks. From finding out my insurance stinks and won't cover anything to family members that I have not talked to in over 15 years coming out of the woodwork because I'm sick. I'm only 34. I had Hyperplasia in the pre-cancer stage only 2 months prior to this diagnosis.

I going with the DaVinci surgery and looking forward to it. I hope I'm not in much pain and what not.

I'm really lost with all this stuff, lol

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

Welcome Jen
I have stage 2b endrometral cancer with total hys via DaVinic robot 2/20/09. The recovery was good some pain but mostly at the stab sites. Much faster recovery than expcted. I have had 25 external radaition (IMRT) and 4 internal (HDR). I will be going back to work on Tuesday.
Best thing to do is start a book for all of your records and appointments this help keep track of every thing and is a good place to keep every thing together. Keep us updated. I find this site very helpful and comforting. We where lost once too but now we are almost found
Lisa

jen2swt
Posts: 3
Joined: May 2009

Hi Lisa
You have been out of work since February? Is that because of the treatments? You can't work during that time? I right now have taken off 6 weeks...Just curious if it will be more if I need treatments.

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

I have been out of work since 1/30 I was to have a simply hyst on 2/4 but the biopise came back cancer so had to see oncoligist. Had surgery at end of Feb due to the docotors schedule. I am a RN medical case manager for a work comp insurance company and my case where given away so did a lot of resting an house cleaing for the first month. I had daily radiation for 5 weks and my doctor wanted me to just rest. After the external i had the internal ones that ended 2 weeks ago and the doctor wanted me to rest for a month but convinced them to let me go back in 2 weeks. I have very good disabilty insurance. My doctors beleive that rest is the best. I was very tired and still get tired by end of the day but it is much better now. Best thing is to talk to the doctors they really know best.

jen2swt
Posts: 3
Joined: May 2009

Wow, that's a long time to be out of work. I'm hoping that I don't need any treatments. I'm keeping my fingers crossed. I can't imagine being out of work for that long because I'm not getting paid. I have no Short or Long Term Disability. I will def keep ya updated on how things go.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Lisa, I took 6 weeks off for surgery - but worked full time during chemo and radiation. I actually enjoying working, even though I did feel a little burnt out at times - it was worth it - it kept my mind off the constant "I have CANCER" freak-out.

Ro10's picture
Ro10
Posts: 1428
Joined: Jan 2009

I too had my total hysterectomy by Davinci in January. The recovery period was very good. I was only in the hospital overnight. Minimal pain afterwards. I never had to take any pain medicine. My biggest discomfort was the bloating afterwards. They inflate the abdomen with gas, so they can see the organs. My surgery was 6 hours long, so I guess they used a lot of gas. It took weeks to get rid of the bloating.
I had an abnormal pap test and thought I would only need surgery to take care of the problem. I was shocked to find out I had Stage III-C UPSC. I have had 3 chemo treatments, my 28 external radiation treatments. I will have internal radiation next Tuesday. And then I will have 3 more chemo treatments. Hope you family becomes a support for you, rather than a headache.
Good luck with your surgery.

lawyerserv
Posts: 5
Joined: May 2011

Hi Ro10, I am new to this site. Can I ask how you are doing since this post?

Arlene

woofgang's picture
woofgang
Posts: 12
Joined: Apr 2009

Hi,I'm Sharon, and you can see more details about my situation on my profile. I've been lurking, but just didn't have the energy to get with it and sign in, not to mention I've not blogged much and was afraid I would do it wrong and drive everyone nuts.... But I'm a stage IIIc, with papillary serous and clear cell features. My situation sounds alot lot Deanna's. I had surgery 12/31/2008 and just finished my 6th chemo May 20. Next is the radiation, and I can't tell you how much you've all helped sharing your radiation experiences. There are alot of angels on this blog and you've all really inspired me.

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

Before surgery I was diagnosis Grade 1 endometrial carcinoma in Philadelphia last March, 2009. I had laparoscoptic total abdominal hysterectomy with bilateral salpingo-oophorectomy, bilateral pelvic and common iliac and para-aortic lymphadenectomy. I'm not sure what that means but I know that I had laparoscoptic hysterectomy while they remove my uterus, tubes, ovaries and lymph nodes thru the vagina. I never had children so I wasn't ready to have hysterectomy but I realized it's better to have hysterectomy before the cancer spreads. After operation they discovered that I have Grade 1 endometrial carcinoma with multiple metastatic pelvic and probable aortic nodes (stage III C) I had cancer 80 % thru the wall of my uterus which is why I have lymph nodes disease. Will have pet scan to check for tumor on my chest/neck area at Fox Chase Cancer Center in Philadelphia soon. They recommended me to have chemotherapy (Cisplatin/Doxorubicin)in June/July. Does anyone experience with Doxorubicin? I have profound hearing loss from birth that I wear hearing aids on both ears and I'm concern if I take Cisplatin will my hearing get worse? I still have less sleep at night and still go to bathroom every 2 or 3 hours at the most. I know it's frustrating but I have to stay positive and keep on living! hugs Reddie

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

I hope all is well with you! wanted to see how you are doing. My mom is going to have the same full surgery you had and will likely be diagnosed with stage 3 (aortic lymph nodes are enlarged). I'm scared to death for her and am looking for ways to try and cope with the bad news :(

Kind Regards,

Amanda

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Linda, I've been very sporatic using this site. When I'm freaking out I go to look for info. You are always well informed and that got me to ask more questions about my cancer and treatment.
My real name is Mia, I live in the Boston area and teach high school in Boston. I was diagnosed a few years ago with uterine cancer and had a total hysterectomy. (2006) I was cleared after that, but continued having pelvic pain. Every few months I would go to the doc and complain - they said I was okay. Then this past summer I could not do anything - constant pain! Finally they located the problem - I have a tumor in my pelvis that runs along the outside of my colon - and pushes the colon in - also have a tumor on my tail bone - which is imbedded in my nerves (hence all the pain). Also.... a tumor in my lung (biopsy says that is also uterine cancer. So it's traveling!
Treatment: Had 6 rounds of carbol/pacil starting in October. It worked well for awhile - then was no longer effective. They talked about surgery, but felt they would not be able to get it all. So..radiation. Just finished 25 treatments to pelvis - and 6 coned in treatments to the tail bone, as a possible pain reduction. The plan is that the radiation will shrink things enough so that chemo will work again. My oncologist says there will be no cure - so this is all palliative care.
Anyway, my entire ass and down my legs are in constant pain. Is that from radiation??? It does not mention that as a side effect. I don't know if it's tumor pain or radiation pain - and that makes me very anxious for some reason. Has the tumor already grown - or is this radiation???

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My radiation has been to the pelvis and the internal radiation that I will have next will be inserted vaginally. So I really don't know if your internal radiation could cause that kind of pain down your legs like that. But I can tell you that I have NO radiation-generated pain of any kind. I will do some research and see what I can find out for you. It probably doesn't mean the tumor is growing, and is more likely just that the nerves are irritated by the treatments. BIG HUG. Be sure and talk with your oncologist about this; he may have something he can give you.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Thanks Linda, you are a wealth of information. The pain is very similar to the pain I had going into radiation - so maybe it's part of the original problem. However, irritated nerves sounds right. There are clumps of nerves around the tail bone - and that's where they have pinpointed the radiation for the past week. I will call my oncologist tomorrow. That internal radiation sounds scary - but it seems that others on this site get through it okay. Isn't it amazing what we get used to!

desertflower
Posts: 3
Joined: Jun 2009

Set up for a hyst on July 14 and looking for another doc to do the Da Vinci instead. Back in Sept 07 had an endometrial biopsy showing negative for cancer and had fallopian tube taken due to cyst/infection. While in surgery doc took lots of pictures all looking good but said she thought I had fibriods, to keep check on it. Well, I got laid off after recovery in December and finally got employed last July. After getting caught up on a lot of back bills I finally got another sonogram (wasn't big on my list as it wasn't causing problems) showing a huge tumor in uterus. Doc set up for surgery now did an in office sonogram and it was round like the moon and had white on it - he said 99% chance it is not cancer but a calcified fibriod. I'm definitely going to get a hyst but trying to be pro-active and get myself ready for worst case scenario should I get positive biopsy for cancer. I'm in fear as I am having other symptoms like lymph nodes doing roll call/pain hoping it is something else. Hearing you guys going through what you are puts a human face on a tragic but survivable disease - thanks for sharing your stories.

Ro10's picture
Ro10
Posts: 1428
Joined: Jan 2009

I love your on-line name. It brings a smile to my face when I read it. Hope all goes well with your hysterectomy. I know it is hard to not worry about the unknown. But like Linda said most of us had no symptoms. Try to be positive, and have cross that "cancer-bridge" when you know for sure. Good luck to you. I hope you get good results after the surgery. If you don't we are here for you. HUGS to you.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

If there's one thing I've learned by this cancer experience, it's that 'borrowing trouble' by trying to anticipate every possible contingency will only exhaust and distress you. So please try not to let your imagination go wild, peeking around every corner ahead of time. Your symptoms and test results so far don't sound like cancer to me, at least not the scary aggressive UPSC kind that I have, which is a cancer with NO symptoms and NO pain. And bleeding and swelling would be the symptoms I would expect for the more common type of highly-curable uterine cancer. So, deep breath! (When you see all of my cancer research on this Board, you will be tempted to shoot back that I should 'practice what I preach', but I have always been insatiably curious and research-oriented about every interesting thing that captures my imagination, and now "cancer" is on that list! I've always been that way, and perhaps we are kindred spirits in that regard. You wouldn't believe all the useless information in my head on a million different topics!)

And if it turns out that it is cancer, we're here for you. If you get the cancer diagnosis, THEN you'll want to be very pro-active, informed and prepared for each step of the journey. But for now, pre-diagnosis, 'ignorance is bliss', so try not to make yourself crazy just yet. BIG HUGS! We all know how scary this is!

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Hugs to all our newcomers. There are bunch of wonderful women on this board, much support and love.

MIND, BODY AND SOUL!

Hugs.

rmcosu
Posts: 8
Joined: Jun 2009

Regan.... 32... Cleveland, Ohio... Grade 1A endometrial cancer.... Megace hormone treatment.... repeat biopsy on August 21, 2009.

cindcurran
Posts: 3
Joined: Jan 2010

hello, i hope that you are well and the megace proved to be beneficial. i was just diagnosed with uterine stage 1 cancer and have decided to try the megace treatment. i will undergo another d&c in 3 months to see how my body has responded.
i am currently expereincing some side effects from the megace and wonder if you did too? my throat feels like there is something stuck in it although i dont find myself having difficulty with breathing... also my tongue and roof of my mouth have a hot tingly sensation... i am going to stop taking the megace for atleast 24 hours and see if the symptoms subside then start again and probably take a smaller dose everyday. i am currently taking 80mg per day.... maybe that is just to much for me. my oncologist cant explain these symptoms that i have but thinks this is good place to begin.
i would appreciate hearing from you and hope you are cancer free from these treatments

cindcurran
Posts: 3
Joined: Jan 2010

hello, i hope you are well and cancer free from the megace treatments. i started the megace on 1/15/100 but am having some side effects that are disturbing and may stop my treatment, which i dont want to happen. i am wondering if it took your body some time to adjust to this treatment.
i am experiencing throat sensations that feel like a have something stuck in the very back of my throat... and last nite after a dosse of the megace my tongue and roof of mouth began to feel hot and tingly...i of course am afraid that my throat is going to swell shut!
my oncolgist states to me that this is all very unusual and doesnt know how to explain it, but that i can stop taking the drug until the symptoms become more bearable and then start again on the megace, maybe in smaller doses. see how i react to that. i have another d&c set up for april 10 to see how my uterus has responded.
i want this treatment to work and i am hoping that megace is just getting used to my body! and i can pick up this treatment once again very quickly.
would really love to hear how you are doing and what happened to you
thank you

Pat from MN
Posts: 9
Joined: Jun 2009

Hi, my name is Pat and I am from Minneapolis, MN. I was diagnosed with Breast Cancer in Oct 1998, had a lumpectomy and eventually, a bi-lateral mastectomy. I had 4 Chemo's and 5 years of Tamoxifin. Then, 10 years later in Oct 2008, I had stomach pain and they found a Fibroid. I had a Hysterectomy on Oct 15, 2008 to remove it. The pathology showed more cancer - this time it was UPSC. I had a second surgery on Dec 9, 2008 to take out the remainder of the Cervix, that had caused problems with the first surgery & lymph nodes (all negative). I have done 3 rounds of chemo - Taxol/Carboplatin, 25 external radiation & 4 brachy's. The plan was to have 3 more chemo's but you know what they say about well laid plans... More stomach pain so another PET CT showed more cancer by my liver. So, now, there will be more than 3 more chemo's to try to shrink it. It kind of makes you wonder what else can go wrong. But this site is a God Send. It is so good to hear from people who know what you are going through. Family and friends are great but they don't always understand your feelings.
Thank you all for being here.

deanna14
Posts: 734
Joined: Oct 2008

Happy you found this discussion group. There are a lot of caring supportive peopled here. So sorry to hear of your diagnosis. Stay strong and fight this monster. We are all in this together. Hope you are feeling okay. Hugs.

Ro10's picture
Ro10
Posts: 1428
Joined: Jan 2009

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.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

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!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You poor thing! You're living my darkest fear: that I will have a recurrance before I finish my initial round of treatment. It happens and I am so sorry that it happened to you before you even got a chance for a reprieve.

I had my hysterectomy & debulking surgery for UPSC in October 2008, also, the same time as your initial surgery. I'm so sorry that you had to have 2 surgeries so close together! No lymph node involvement but mets to the liver later; I guess it doesn't matter what stage they called it at the time of the 2nd surgery. ((((Pat))))) Is it the UPSC that metasticized near the liver, or another primary cancer? I have no idea which is better! I am having trouble finding any good information online about 'mets', so anything you can share that you learn from your oncologist would be very helpful for those on this Board who are dealing with recurrance, and those of us who worry about it and would like to know more. Anyway, welcome welcome.

I have UPSC Stage III-c, and had 6 rounds of cabo/taxol from November 2008 to the end of March 2009; then external pelvic radiation all of May with my last external radiation treatment next Tuesday (28 total rounds); which will be followed by 3 internal radiation treatments June 17th, 24th, and July 1. I have a 2.7mm 'nodule' on my lung, according to my last CT-scan, which both my oncologists say is NOTHING, but that they will check on when I have my next CT-scan mid-July. So I definitely feel your pain, Pat, and share yur fears.

desertflower
Posts: 3
Joined: Jun 2009

...for the comments. This happening really makes you look around and realize that if you become ill - there are sooo many loose ends in your life that you need to straighten out and line up in case things do get hairy. I'm trying not to make myself crazy but I'm going to keep myself so busy between now and the surgery tying up loose ends I won't have time to go crazy although it may look like I've gone nuts because I'm jumping from one thing to another. My husband doesn't have a supportive family nor do I - my friends are spread out all over the country (veteran trucker - that's what I get for my gypsy lifestyle coming back to bite me!) I'm seeing with clearer eyes my own weakest links and if I get a chance to do better in the future I definitely will.

hellokittymary
Posts: 2
Joined: Oct 2009

Hi. My name is Mary and i'm new to this site...I was dianosed after having a sonogram for a side pain in my right ribs about a month ago...After numerous tests and biopsies, they still aren't sure of the pimary so they are senidng me to City of Hope in L.A. county. They are pointing to the Uterus as the cause though, and said it has metastisized to the liver and bile duct of my pancreaus also two possible spots in my lungs...I'm 41 and very scared. I get my port in after his weekend to start chemo as this is supposed to be very aggressive cancer, so they said enough testing...They are putting me on Gemcitabine and Platinol...Has anyone ever heard of this? Thank you and God Bless you all.-Mary

california_artist
Posts: 850
Joined: Jan 2009

When I saw your post, it just stopped my in my tracks. I cannot begin to say how very, very sorry I was to hear how things are going for you. I hope you have people around to keep you feeling loved and hopeful. I really don't know what to say, just I feel for your pain.

As always, love and hope,

claudia

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

I appreciate your concern. I do have friends who are extremely helpful. My daughter lives in New York City,
but calls daily and comes to visit when she gets a chance. Sometimes, I'm okay with my prognosis, but there
are also times when I feel lost and scared. I stopped radiation last week and the tumor pain is increasing daily.
I see my oncologist tomorrow, but he said I have to wait a few weeks before I can have any chemo - he's
talking about some trials - but I don't know if I want to do that. Basically you have to stay in the hospital and
they pump you with strong chemo for days. It burns your skin off! Anyway, tomorrow he will prescribe a stronger
pain killer - I have percocet, but it does not help much. I'm still working so have to take something that reduces
the pain, but doesn't make me loopy. Anyway, thanks for your note - it means a lot to me.
What is your situation? Mia

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Mia,

Your story is amazing. I wonder if I would be as courageous as you - dealing with serious pain and still wanting to work!! I do know that being busy helped me "get out of my head" which is a dangerous and stressful place for me to be.

God bless you and may you get relief from your pain.

Hugs and prayers. Mary Ann

Kathy09's picture
Kathy09
Posts: 99
Joined: Jun 2009

Diagnosed breast cancer Jan. 09 4 Rounds of chemo and just had lumpectomy 6-8-09 I just found out did'nt get clear margins have another surgery scheduled 6-22-09 I feel like this will never end. Miss alot of work

california_artist
Posts: 850
Joined: Jan 2009

I have to apologize. I had a PET/CT right after I wrote that post to you and then I went to California for month to deal with a 10x10x20 foot storage space, where i had to decide how to let go of half of the stuff,and I apparently lost my mind somewhere in those storages. At one point I had four storage spaces so I could keep track of what was going where. The PET/Ct came back with no metablic activity. So I just allowed myself to not think about cancer, very much for a month.

As for my story. I have UPSC, surgery April 08, no lymph nodes taken, confusion, keeping an eye on things, CT, PET/CT, pap type tests every four months, lots of lifestyle and diet changes, and just really hoping for that shoe not to drop. I am going to keep reading the posts to see how you are doing. I hope everything is going well for you now.
I offer my number to anyone 9475179417 or you can email me at claudiaallen27@yahoo.com if you have some thoughts. Sometimes talking to a friendly voice is much more comforting than a computer. Some of these gals are very funny and refreshing on the phone.

As always, love and hope,

Claudia

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