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To those who haven't posted in a while

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am just wondering about those ladies who haven't posted in a while. I read this board everyday and was just wondering how some who don't post are doing. If you read this and feel inclined please say HI!

minniejan
Posts: 88
Joined: Dec 2010

HI,

I posted and lurked often last year, USPC, 12/10 surgery. Just went for another checkup and CA125, scans are fine 4/12! Just waiting for the results of the pap. I am now battling a completely different cancer, tall cell in the thyroid, had surgery for that, then RAI therapy. So now it is wait and see for that one too! But I feel blessed so far. One year after finishing therapy for the USPC I am considered N.E.D. Just a week after the finish of the therapies for the second cancer right now. I go back to both doctors in July for more scans and more testing for both cancers! It has become a day long process but as long as they can do all the testing for both cancers on the same day I am happy. I just go on this website weekly to check in to see what is going on. I forget the last time I posted. :)

MinnieJan

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Glad for the NED news....MinnieJan Makes me feel better to know you are hanging in there...here is hoping for many days of NED for both cancers....

susangr
Posts: 63
Joined: Oct 2010

I haven't checked in for a while but do read postings frequently. I have UPSC and completed chemo Feb 2011. Had CTs in March 2012 and so far still NED. Am being followed for thyroid tumors now with further reevaluation in June. I think this is a great thread. Thanks for posting. Susan

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Dancing with NED!!! Good for you!!! I am so glad. Thanks for posting, Susan.

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Count me as another frequent checker who doesn't often post. Still I do feel part of this sisterhood and admit I should be a more active member. To recap - dx December 2009 with UPSC, standard chemo and external radiation all finished in July 2010. "Suspicious' para-aortic nodes on CT beginning November 2010 became recurrence in May 2011. Other enlarged nodes in supra-clavicular node found in August 2011. Second round of carbo-taxol completed February 2012. So here I am - a little the worse for wear but still kicking. A CT in December 2011 showed all nodes had shrunk to normal but one para-aortic that stayed at 7mm. My next appointment is May 8 and I have no idea what the followup will be from there. Thanks to this group I followed my own CA125 (against doctors wishes!) and found it was a marker for me - so I will check it again before the May appointment. Marianne has said it best - we all know that recurrence is a probability but hope that it won't be our reality. Again thanks to this group I am better able to face whatever comes knowing that there are still many things to try and that life can be good during the attempt. Thanks to everyone here for sharing and showing great courage as well as compassion.

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

It's nice to hear from you. You sound very upbeat. I truly wish you the very best report when you see your doc on May 8th.

Mary Ann

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I was diagnosed in March 2008 with Stage 1a UPSC and am now four years NED. My last gyne-onc appointment was about two weeks ago, and everything was fine.

Jill

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Thanks Jill for shariing. Treat yourself to something nice!!! Hurray for NED!!!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Thanks for the update. Keep us posted on your May visit. Praying for a positive report for you....Norma

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

glad you checked in Suzi. I think when each of us shares their experience it helps all of us. I hope your follow up in May will be just fine.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Not sure if I responded to your post. Glad you stopped by to give an update. Hope your May 8th check up went well....let us know.

firstsister
Posts: 13
Joined: Sep 2009

Haven't posted in a long while. Here's what's going on with me. Diagnosed with UPSC 3C after complete hysterectomy in Sept. 2010. Three rounds of carbo/taxol, then 28 external radiation treatments, then three more rounds of carbo/taxol ending in June 2011. Between the radiation & last three rounds of chemo had fluid buildup in groin area that had to be drained - twice. Had a bad time with depression, lost 20 lbs., etc. Finally got myself back on my feet and then Aug. 2, 2011 a car t-boned mine (with me in it) and collarbone was broken. December 2011 my beloved brother died Christmas morning. Late Jan. 2012 had a pet scan even though CA125 was bouncing around 24, 25, 26. Three nodules lit up in my lungs - one in the left and two in the right. Left was removed surgically with margins clear. Now in the middle of more chemo - carbo/genzar to try to deal with the nodules in the right lung. One more round to go. Then another PET scan.
BUT, I've been singing in my church choir (we sang the Halleluja (sp?) Chorus on Easter Sunday and with two other smaller groups which entertain at nursing homes and I'm doing okay.
Thanks, many thanks for the love and support of this wonderful group of fighting women.
Pat

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am so very sorry to hear about your brother. All of this is a lot to contend with, isn't it? You keep your chin up. And keep singing in the choir. If you can do the Handel you sound like your lungs are doing pretty well. I remember that there were few breathing pauses in the Hallelja Chorus....singing is a great way to increase lung capacity and pump oxygen into our bodies.
Best to you!!! Sounds like you are a fighter!!! Thanks for sharing. Norma

Kaleena's picture
Kaleena
Posts: 1063
Joined: Nov 2009

Thanks for posting this. I too wonder what everyone is doing.

Here are my facts:
Sept 2005 - Hysterectomy (not for cancer)
Oct. 2005 - Staging Surgery - final diagnosis Endometrial Adenocarcinoma
Grade 2, Stage ii/iiia
Nov 2005 - port placed - chemo started - Allergic to taxol - changed to
carbo/gemzar - finished in May 2006
Aug 2006 - 3 bracytherapies
July 2009 - after CT told I had recurrence (spot there since 2005) - changed doctors
after this.
Oct - 2009 - biopsy on mass came back positive for the same
Feb - 2010 - surgery to remove mass (which was negative)(one removed lymph
had microscopic cells) and surgery at the same time to repair huge hernia
Oct 2011 - finally had port removed!
No further treatment required other than normal check-ups and scans.

Since getting my port out, I now have been enjoying my family and friends without the monthly reminder of getting that thing flushed. I am also busy with my sons, two of whom are in college and my youngest is a junior in high school. I am looking forward to going on a cruise in July with my family.

Thanks again, Norma, for posting this. I love your photo! I hope all is well with you and your family. Keep on smiling!

Kathy

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Photo is taken with grand daughter, thanks!
Glad to hear about the port removal. I find each check-up I become less nervous about them. Not that I take my wellness for granted, just that time has dulled the fear.

Have a great summer...enjoy that cruise. It is one of the things on my to do list to take a cruise with my kids and grandbaby.
Have a blessed summer.

marieinlv
Posts: 39
Joined: Aug 2011

Hi, I'm thrilled to say I can be counted as another Survivor. We very well could be looking at a turning point in our Illness. I look at this through NED eyes. I was diagnosed 11/17/10, surgery, chemo, test. The depression or anxiety was mild but surprising. The not knowing is harder to deal with than the knowing, am I right? I'm so Thankfull for the collective support with information, kindness, and an unending ear for when we can't take it anymore. Ladies, I have been on the side crying with you when one of us is waiting for a test or having treament. God has asked us to Love each other, Wow is he crying tears of Joy when he observes the Love being shared here. Greatfull for the time I've been NED. I go next month for a check up. I'm feeling fine. My diagnosis was UPSC stage 4 (grade b? not sure). Trying to do what I can to help the Drs. less stress, excercising some, eating more "live food". Happy to be able to say Hi, Marie

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Hurray for your NED so far!!!You are so right about about the support here. It has carried me through many dark moments. And I have learned a lot about the strength of spirit the ladies here have shown. So glad you posted. Please let us know how your visit goes next month....

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi all, I do feel bad that I haven't posted in awhile. I just am still so sad about losing so many wonderful sisters, so I am afraid to even come here and read posts. I need to tell you that my last ct scan was good and my lung nodules are stable and no new disease showing. I hope this gives someone hope that there are good drugs out there to keep us going. I am on Tamoxifen one a day, and have already gone through radiation, carbo/taxol, doxil, low dose Taxol. I have neuropathy in my feet real bad, and my hands often. Chemo has taken it's toll on my digestive system and my brain, and I still get tired easily, but I am still here to complain about it all. lol
I have the the chance to go be with my daughter in Boston (I am living in Oregon) while she had both our grand babies, so I feel so lucky to be able to go and do things. I will be here from now on. Hugs to all our sisters and always thinking of our sisters with angels wings.
Sharon

Ro10's picture
Ro10
Posts: 1396
Joined: Jan 2009

I am glad things are stable for you. I have been wondering how you have been doing. Glad you can laugh about your problems from chemo. Two grand babies now. How special for you. Too bad you are so far apart from them. Sending hugs back to you. Continue to enjoy each day. In peace and caring.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

I felt bad not letting other sisters know that there is hope out there, and having a doc that cares about you is what it is all about. I am far apart but web cams are great. I will see them in Sept. Hope you are having a good day.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Hugs to you too. I know you are enjoying those grand babies. Glad you said Hi! I hope that neuropathy gets better.

Pat51
Posts: 111
Joined: Feb 2011

I don't post often but lurk in the background and read all the posts. I was diagnosed as a UPSC Stage 1B (old charts) in Feb, 2011. I had surgery and 6 rounds of chemo, then finished with internal radiation in August, 2011. I am back to work. I had my one year scans in March and they were NED, but my CA125 was up. The CA125 worries me a bit but I hope that it will be down at my next checkup in May. My husband is a stage 4 melanoma patient and his disease is progressing at this time. We are searching for a clinical trial or other effect treatment for him, which is proving to add a great deal of stress to our lives.

I feel privileged to have learned so much from the knowledgable women posting on this site. It has been a pleasure and an inspiration to have met so many brave, strong cancer warriors here.

Pat

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

So sorry about your husband, Pat. Can't imagine more stress than that. Prayers are with you both.

Sharon, I love your attitude. And you're right - "good to be here to complain about it!!" May you continue NED.

hugs to all. Mary Ann

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Sorry to hear about your husband. I hope they find some kind of treatment for him.
Glad you checked in. You are one of the brave warriors fighting the good fight. I hope that your check-up in May is positive. Let us know.

cheerful
Posts: 121
Joined: Apr 2011

Hi Norma:

I am known as cheerful on the UPSC board. I joined the UPSC cancer group in April of 2011. I had a hysterectomy in February of 2011 where it was found I had cancer. My gynecologist did my surgery. I met my oncologist through my gynecologist once I was diagnosed with cancer 2 days after my hysterectomy. A few weeks later I found out that it was UPSC through my oncologist and I was diagnosed at Stage 1. My cancer was a large polyp.
When I first found out I had UPSC, I never heard of the cancer and he mentioned to me he felt I would survive this cancer based on the histology, my age and my medical history. So I felt very relieved. It was a very scary diagnosis.

I also searched the Internet about this cancer when I was first diagnosed. I know from reading a lot of the posts that you cannot believe everything on the Internet especially from many years ago as a lot of the statistics are outdated on UPSC. I feel I am eating better and healthier since my diagnosis.

I went through 6 rounds of chemo starting in mid April of 2011 (carboplatin and taxol) and finished my chemo treatments the end of August of 2011. I also had a blood transfusion in August as my platelets and white blood cell counts were down. I felt better once I had the transfusion. I then had 3 rounds of radiation and finished with the radiation in mid October of 2011. My platelets and white blood cell counts were normal in March of 2012 as I asked my oncologist's office. I have had 2 cat scans since October of 2011 and it shows "NO" evidence of cancer and also had a pap smear in February (this year) and blood work of CA 125 at Number 8 the end of February (this year) and they came back normal. I just hope that it continues to stay this way for the future where my tests show No evidence of cancer. I went through my cancer treatments last year with a very positive attitude. I live life every day to the fullest and appreciate and enjoy each day. I have been tired though from going through chemo and it has taken me awhile to get over the tiredness since I finished all of my treatments last October. I turned 60 years old last July. Every week I feel stronger and better.

I have an excellent oncologist who is known nationally and locally and he knows a lot about UPSC and is an expert in his field. I live in Delaware County, PA which is outside of Phila. I had all of my treatments done at a Fox Chase Cancer Treatment Center at Crozer Hospital in Upland, PA. My oncologist is affiliated with Crozer Hospital in Upland, PA.

I go on this website just about every day and it is so informative and helpful as I read a lot of the posts from various women.

My only child (a son) graduates from high school in June and I am looking forward to his graduation and he is going on to our community college in our area. On his graduation day in June, it will be a very emotional day for me looking back on his 12 years of school.

I also plan to return to the work force this summer as a part time legal secretary and I am looking forward to going back to the work force.

Cheerful

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I know you will enjoy that graduation. You must be proud of your son. Congratulations on his accomplishment.

60 is the new 40....enjoy! I think I feel healthier now than I did years ago. Keep that positive mental attitude!!! It is what kept me sane (well kind of sane) through it all. I figured there must be a reason for everything I am just not sure what the reason is. And looking for the positive in any situation, for me, makes it better. Not sure if folks are born with this trait or develop it. For me it is what makes me keep putting one foot in front of the other each day.

cheerful
Posts: 121
Joined: Apr 2011

Hi Norma:

Also, thanks for responding to my e-mail. I am very proud of my son. He is a very good kid and has made the honor roll all this year and in past grades at his high school.

I see your picture and I am assuming it must be your granddaughter. She is really cute and precious. How old is she now? Obviously, your children are grown. How many children do you have?

I did check your profile and I noticed that you live in Texas so you are obviously pretty far from me as I live in Penna. I love that show Dallas that used to be on years ago (I watched it every Friday evening faithfully when it was on) and I know it is returning to TV this summer on a cable channel. I cannot wait to see the show again.

I would like to add you to my friends list. I hope you will do the same and add me to your friends list as well.

I also noticed that you are in your 60's. Your right, 60 is the new 40 today. I changed a lot of my eating habits once I was diagnosed with cancer and feel better and healthier. That's great that you feel healthier also.

I did forget to mention in the post I made yesterday that I also had a couple of cat scans last year one in March and one in June of 2011 and the cat scan in October of 2011 as well. I just had a cat scan done in mid April of 2012 and they all showed No evidence of cancer. I am very happy, glad and relieved so far that the cat scans have all showed No evidence of cancer. I just hope it remains that way for the future. My oncologist will want me to have a cat scan done 2x a year so my next one will be in October. My oncologist wants me to come back in June for a check-up.

Anyway, please keep in touch and I will do the same.

Cheerful

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I have 4 children. All grown the youngest is getting married this summer. Grandaughter is year and a half just beginning to talk. She lives in Colorado so don't get to see her as often as I would like. Thank goodness, for Facebook.

I haven't had as many scans as I did in the beginning. I started to like the taste of the Mocha flavored stuff they give for a contrast. I am due for a mammogram and another check up in three months. Then if everything is good I won't have to go back for 6 months. So far all is well.

Added you to my friends list too. Bet Penn is beautiful. I have only been able to see the Fall colors in the Eastern US once. Lived in the deep south all my life. Not much in the change of seasons. Summers are really hot.

You keep in touch too...the ladies here are wonderful for giving support. There is a great deal of information at this site. I think the comments are well thought out and knowledgeable.

Hope your next check up in June is all clear....Norma

cheerful
Posts: 121
Joined: Apr 2011

Hi Norma:

My real name is Jane. PA is a really pretty area - I live in the suburbs outside of Phila. We do have 4 seasons - but my favorite season is the summer because there is so much to do and a lot of places to go. July is an especially busy month for me and my family as both myself and my son were both born in July so we celebrate our birthdays about 2 weeks apart.

Speaking about mammograms, I had one done in December and they found some calcifications in my one breast so now I have to go every 6 months. I will go either the end of June or in July for the mammogram. I also have to have a bone density test done as I have not had one done in several years as my oncologist wants me to have one done.

I also just had a colonoscopy last month and thankfully everything was fine although I have diverticulitis and I take Citrucel for that and I have to go back in 5 years and have another colonoscopy done. I had my first colonoscopy done when I was 50 (10 years ago) and that's when the diverticulitis was found. But anyway, it was very good news as there was NO cancer found in my colon - thankfully and I am very grateful.

The ladies on the UPSC are very knowledgeable. I don't post often though, but I do check just about every day to see what issues are brought up on this board. I am very concerned about UPSC and it is a very scary diagnosis, but my oncologist feels I will survive the cancer as I had Stage 1 of it. I know I was given an 80 to 90% chance of survival which is quite high by my radiologist and I do know there is a chance of reoccurrence, but I continue to think positive thoughts. When I was going through treatment last year, I had a very positive outlook and that is so important in fighting cancer. Anyway, I just hope this cancer never comes back on me. As I mentioned, I changed my eating habits and I feel I am eating much better.

Good luck with your mammogram and checkup in 3 more months. Please e-mail me on this board and let me know how you make out with it. I will do the same after my visit with the oncologist in June. I am planning on going down the shore for a few days the end of June and am very much looking forward to getting away for a few days and enjoying the sunshine and the beach and walking the boardwalk and enjoying the time away with my family.

Thanks also for adding me as a friend. You have a big family with having 4 children.

I have been down South to North Carolina back in the late 60s and mid 70s for a short time and have also been to California on a 2 week trip back in the 70s as well and I saw most of California. California is a really beautiful state. I also went to Arizona and Las Vegas as well and this was part of the trip. It was a 2 week tour with Tauck Tours and I saw so much. I also went to Hawaii on a separate trip the year before for 2 weeks.

I did a lot of travelling when I was single as I did not get married until I was 29. My husband and I did do quite a bit of travelling back in the 80s and 90s decade. We went to a few of the Caribbean Islands and they were all so pretty and very relaxing.

I went to Europe twice and saw Greece, Germany, Austria and Italy. They were all beautiful countries. I would like to go back to Greece and see more of Italy one day and hopefully will and especially Italy. I only saw Venice, Italy when I was there back in the early to mid 70s decade.

Anyway, I will keep in touch.

Cheerful
(a/k/a Jane)

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I am still here!

PS: Has anyone heard from Maggie?

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am glad you are still here. Hope all is well with you. Maybe if Maggie reads this she will stop by and say HI!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm amazed the number of "lurkers and readers" only! I'd love to see these women consider posting, and if you're uncomfortable, we do understand. I've gained so much insight from each and every person on these boards, and now wondering what I'm missing from others who only lurk and not post. Think about it, surely you have some great experience or suggestions for the members. If not, great to see you all peak in and let us know how you're doing.

We're all in this together.....

Hugs,
Jan

minniejan
Posts: 88
Joined: Dec 2010

Hi Jan,

I am the first lurker on this particular post, is lurker a real word? If not, it is now! I do not post more often because I do not feel I have anything constructive to post, not that I am uncomfortable with posting. But yes, you are so correct, we are all in this fight together. And I have also learned so much from this site. Maybe it is time to get back into it.

I have recently been battling thyroid cancer less than a year after UPSC and after much research following my second diagnosis I declined the radioactive iodine therapy after undergoing surgery to remove my thyroid. I wonder how many women have both cancers? Obviously uterine is a woman's cancer, but thyroid cancer is predominately female as well.

Minniejan

lkchapman's picture
lkchapman
Posts: 104
Joined: Jan 2011

I, like Minniejan, don't post because I don't really have anything new to add but I follow everyone's posts. I have cried with the deaths of Linda and Dianne and hoped for all the others here who are currently waging their battles. I am approaching 3 years NED in August from stage IIIc UPSC and am doing great! I had 5 weeks extended field radiation/followed by 3 HDR treatments then 6 rounds carbo/taxol at MD Anderson. My thoughts continue to be with all the wonderful women here who have taught me many lessons about life and living with cancer.

God bless you all,
Laura

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

....and both of you have much to share here. I do wonder what's going on with people when they don't post and admit that sometimes I think the worst. Thanks for "dropping by" and sharing with us now.

So glad for you Laura. do you attribute your NED to anything particular?

Jan, my doc said that there is a connection between upsc and thyroid cancer though I have read that others say not. Who knows anyway. I hope your surgery did the trick. My SIL had hers removed over 40 years ago and has managed well with medication over the years.

Nice connecting with both of you. Mary Ann

lkchapman's picture
lkchapman
Posts: 104
Joined: Jan 2011

Hi Mary Ann,
I guess I was just lucky. The only thing I do is try to eat less, worry less and exercise more. I do have a wonderful gyn-onc who told me after the path came back that he knew that I was going to be okay. He said, "I don't tell every patient this, but I think you are going to beat this". At the time I thought yeah, yeah, I'm sure this is just your standard doctor speech. But maybe he was planting a suggestion in my mind. Anyway he's a good doc. Thank you Mary Ann and I wish you all the best on your journey.

Laura

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

Hi again, Laura,

Maybe it's luck but there is something to eating less, worrying less, and exercising more.

My original doc told me that exercise is best thing to avoid recurrence!! He also said that he thought I would live twice as long as dire prognosis at the time. These comments do give us hope and encouragement.

Whatever you are doing is obviously working. Take good care. Mary Ann

sleem
Posts: 92
Joined: Feb 2010

Holding in NED 3 years since 1-31 this year. Stage 1 A grade 3. Thanks to all for updates.

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