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Ok, I'm definitley in this sorority now

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hi All, CheeseQueen here and here is my story so far:

Post-menopausal for 20 years, had early menopause at age 39 (don't be deceived by my profile picture, that was in 1976!).  In January, started having bleeding.  Had been to gyno in November, no problems. 

  • 1/5/16  Gyno retired in December, had to see colllegue in practice who did endometrial biopsy and said to wait 2 weeks to get transvaginal ultrasound.  And BTW, just found out that previous gyno had not done PAP in 3 years.  All the while, I thought he was doing a PAP each year when I went in for my annual exam (note to self, always follow up on results!)!
  • 1/15/16 Endo biopsy report states predominately blood and rare fragments of endometrium with focal stromal breakdown suggesting repeat sampling and follow up.  So in other words, poor sample quality.  Waste of time, effort, and pain.  I don't know why they even do these anymore.  So I wasted the month of January on this and waiting to do transvaginal ultrasound
  • 1/26/16: Transvaginal and abdominal ultrasound results indicate endometrial stripe 1.3 cm, 3.0 cm righ adnexal mass, perhaps pendunculated right uterine fibroid but not sure.  Diffuse uterine adenomyosis.  Suggests contrast pelvic MRI
  • 2/3/16: MRI indicates slightly enlarged uterus, abnormal endometrial stripe and thickened consistent with adenomyosis.  Appears to be right-sided pedunculated fibroid.  Small amount of free fluid within the pelvis. Ovaries unremarkable.  Further eval warranted
  • 2/1/16. CA 125 in normal range at 20
  • 2/6/16 Had D&C and Hystoscopy and got results on 2/18/16: high grade endometrial adenocarcinoma which is more likely of endometroid type based on pathology, but more specific diagnosis deferred to surgical speciman
  • Scheduled for CT scan 3/7/16
  • Scheduled for DaVinci surgery at Fox Chase 3/17/16 (Happy St. Patrick's Day!)

Appreciate all and any advice as I embark on this journey.  I have had intermittent pain in my lower right flank through this process.  Doctor says could be the fibroid, but I never had any problems with fibroids in the past and ultrasound 7 years ago showed no evidence of a fibroid.  I did have some bleeding 7 years ago and had ultrasound and biopsy which apparently showed nothing.  Now I'm kinda wondering if I should have pushed a little harder at that time.  Who knew?

I feel I'm finally in good hands at Fox Chase.  But I am concerned that this might not just be as easy as just surgery.  At the very least, will require radiation therapy of some sort.  My family had a trip of a lifetime scheduled for April 12 to Tuscany that of course, I'm now out of.  Very upsetting.  They are trying to decide who, if any of them will still go.  Feel like everything is on hold until results come back after surgery. 

Thanks for forum to vent.  Sometimes that's all we need, isn't it?

CheeseQueen

 

Anonymous user (not verified)

Sorry you had reaction to Taxol, and hope that switching to taxatore solves that problem.  I had to have my doses lowered after round 3, and had to skip taxol for round 5 after my doctor became concerned with my neuropathy in my feet.  He said the only other option he would give me was taxatore, but he stressed that skipping a round of taxol would not affect my outcome.  So whatever that means, I trust him.  I have heard one other person on the Ovarian board that said her doctor told her that the first round of taxol killed most of the cancer, and the second round cleaned up what was left.  If that is true, than even one round of taxol is a great benefit.  Anyway, after missing two weeks straight with chemo 6, I finally completed it on April 14th, got to ring the bell.  Hugs Nancy

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

HELLO!!!  I'm glad you found us and I agree 100% - this board makes having cancer a bit easier.  There is always someone with extensive information and somebody to hold your hand or make you laugh.  I started with Taxotere and after chemo #3, I was done.  That was December 8th and I'm still doing physical therapy two days a week to "fix" me.  I think though, that although the Taxotere caused the neuropathy, most of my damage was done because my blood pressure and blood sugar went so high during chemo.

Anyway, this is a great place to be and there are very few topics that are off limits as you found out after the "chemo farts" post - LOL!

Love,

Eldri

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Anybody else have problems with really bad heartburn with the chemo?  I've gone back to taking my prilosec 2X/day and been chomping on Tums, but this is painful.  In fact, when I had the reaction, the most pain was similar to this.  Nasty stuff!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I had heartburn after almost every chemo some minor and some severe.  I used Omemprezole. If I started and took it before I had a flare up it was a lot better so I ended up taking it for about 5 days right after chemo.  A few months back I had an attack of gastritis that was so bad it sent me to the ER.  They first thought it was a heart attack, but ruled that out and decided on the gastriti.  I now take 1 Omemprezole in the morning and another one or two before meals ( Dr.s suggestion)  I have to watch what I eat really careful no caffeine, spicy or acidic food.  I hope this doesn't happen offn for you, because it can be miserabl.  Hugs and prayers, Lou Ann

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Thanks all for heartburn replies. This group is such a comfort And support to know that the path I'm walking is well worn. I'll continue with the Prilosec twice a day with add on tums and maybe the acupuncture will help heartburn too. I too feared it was heart because of strong family history, but they EKG me at the slightest hint of chest pain and that seems fine. 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

And I can count on one hand the number of times I had heartburn before chemo.  I was so used to eating just about anything, but man, after one falafel on chemo I thought I was going to die!  I used a generic form of Pepcid and that helped me.

Chris

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

I also ended up in the hospital thinking I was having a heart attack but was diagnosed with esophaheal erosion.  The heartburn was horrible and every once in awhile I still get it.  I can't remember what they prescribed for me but said not to take it if I didn't need it because it has some bad side effects.

Love,

Eldri

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I never had heartburn/acid reflux before chemo but I went thru a big bottle of Tums as well as Omeprixole during chemo. Now, two years later, I can eat almost anything and no stomach promblems. This too shall pass!

Anonymous user (not verified)

I had it after the first time, told the chemo nurse and she suggested tums and pepsid.  Worked for me most of the time.  I also noticed if I could get rid of the constipation, it helped the heartburn.  Hugs Nancy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

I ended up getting a prescription level of Pepcid. AND, they reduced my Decadron.

I hope you find the right fix for the burn. No one size fits all for sure!

Love and Hugs,

cindi

brissance's picture
brissance
Posts: 192
Joined: May 2016

Nancy and Eldri, I already appreciate you both... thanks for the welcome.  Nancy you rang the bell.  I am so happy for you..  you are sweet to share the info.  Eldri, as my mom would say you have a touch of piss and vinegar...  love it and your Chemo Farts.... hoping the Taxotere works for me sans the neuropathy.  I am sure it will work out without any hitches.  

Thanks to all you for supporting me and each other.  Makes life worth living.  

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I had such bad neuropathy with Taxol that my dr switched me to Taxotere. It did take quite a while for the neuropathy to abate but it did not get any worse. Just be aware that taxotere may come with a different price. It sometimes causes your hair to come back much thinner or even not at all. This doesn't happen to everyone, but several of us have been affected. Not that I regret changing- my neuropathy was getting so much worse with each treatment and I have been NED for two years now! My neuropathy is almost entirely gone and I feel great!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Thanks Sandy. I'll keep that in mind. I had no trouble with infusion yesterday. I'm on alert for neuropathy. Getting acupuncture in hopes that it may help. 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I haven't had heartburn, but I continue to have stomach issues, mainly constipation, but also occasional diarea. It seems like it gets worse with each treatment. My next chemo is Monday.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I never had diarrhea, but constipation was my major side effect.  I started taking Miralax the day before chemo and continuing for 3-4 days or until I had my first post-chemo BM. I also ate a lot of fruits and vegetables and drank a lot of water.  It usually took about a week to "normalize" though once I had a bout of constipation in the second post-chemo week.  In addition to heartburn, I had these transient stomach pains.  I never found anything that prevented those, but massage and stretching seemed to help.

Chris

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Thanks Chris. I really make an effort to drink water and eat fruit and veggies when I can. I'm using miralax much more now and it is helping.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Well, the inevitable day is here. Day 22 after first chemo hair began to come out in clumps. Although I've been preparing for this for weeks, you all know the shock and upset involved with this. Onward and upward. Had my hairdresser clip me down to a #2 while I wait for full baldness. Otherwise I'm doing well. Had 4th chemo out of 18 on Wednesday.  A little nausea and fatigue but manageable. Looking forward to my son and his girlfriend coming up from Orlando for Memorial Day weekend at the beach. I'm hanging in there. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

CQ, I'm still surprised when I walk past a mirror and see my bald head or my scarf - eventhough this is my second time around to lose it. The good news is that it came back pretty quick last time. Hopefully yours will, too.

If the short hairs are still coming out in clumps you may want to try rolling a lint-roller over your head to help it along. Tape works, too, but may be a little harder on a sensitive scalp.

So glad to hear that your chemo treatments are going well and without too many side effects. Just think, you are just shy of a quarter way through already! Soon you will look back at this chapter in your life and marvel at your courage and determination. Keep on keepin' on! Kim

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Thanks Kim for the advice.  Even though I used the "special" shampoo that was supposed to minimize the pain, I'm finding that my head aches. I'm sure this too will pass. Lint roller!  Ha!  This forum has such great ideas. Don't know what I would have done without you gals.  

Anonymous user (not verified)

I've only seen myself (fleeting) in the mirror, but was shocked when I saw a picture someone took of me recently.  What a complete utter ugly person I had become with no hair.  Fortunately my friends quickly talked me out of that notion and said my hair didn't make me the person, and I own my "baldness".  I did try wearing a wig out with them (in fact it looked identical to one of my friends real hair do and color) and they laughed at our twin look, but said it didn't matter, they had gotten use to me without hair and not to wear it on their behalf.  So I go out in the wind, which it's windy here a lot, and don't worry about what I look like.  Afterall, it's not my fault.  I took a good look at my head this morning, and notice a lot of red bumps again, they don't itch but it just adds another ugliness to my head today.  Don't know what that is, I'll use my Cetaphil gentle skin cleanser and hope that it helps.  CQ, my doctor recommended it when I had a bad cause of folliculitis caused from my hair failing out or shaving it.  Glad to hear you are handling the chemo OK.  Hugs Nancy

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hi Gals!

I'm preparing for my 7th chemo this week. So far has not been so bad. I've lost most of my hair but I've pretty much adjusted to that with various headgear. The hair started going about day 22 for me. And no need for a Brazilian!  Not that I got one of those anyway!  Despite using that expensive eyebrow gunk, I think the eyebrows are going too. 

My little piggies are starting to get a little numb  I haven't had acupuncture for a couple weeks since my doc has been on vacation  But I get it tomorrow so I'm hoping it helps stop any more progression of the neuropathy   

I had a horrible bout with constipation a couple days ago despite my best efforts and was concerned about neuropathy in that area, but I seem to have solved that problem  Howevwe, I was alarmed when after I inserted some Replens I noticed some blood on the inserter  I haven't noticed any spotting at all, but this alarmed me since I'm almost 3 months out from my hysterectomy and all this blab about vaginal cuff reoccurrence scares me  I'm not going to be getting radiation until probably September.  Guess this is a topic of discussion with oncologist Wednesday  

I've also noticed that I don't "track" just right  The only way I can describe this is you know how back in the day when a movie on a reel used to kind of jump?  Well sometimes, for instance, when I'm in a store looking around, it seems like my eyes or vision ate a little behind when I look around.  It's a very weird feeling  

I'm still trying to get my port incision to heal  it's not infected but still scabby and I would be hesitant to get in to a pool at this point  it seems like if I keep it covered with an antibacterial bandage it does better  I just want it healed  The port area remains a little tender.

My doctor still has me on pretty high dose steroids because of the reaction I had the first day to taxol  I have not had any more reactions but my blood sugar shot up to 235 one week  I had pre-diabetes before all this.  I tried to convince my oncologist to put me on metformin but she just didn't think the risks were worth it.  I'm pretty careful with my diet and the blood sugar has been down the last few weeks  However, my potassium was low last week so they gave me some supplemental potassium and I've been concentrating on making sure to include high potassium foods in my diet every day.

I've lost about 15 pounds, but frankly that's where I should be  I am eating, but I've changed my diet to no red meat, mostly vegetarian and chicken and turkey  Trying to avoid refined sugar (tough, I love sweets!)!  On days when I feel well, I'm walking 2-3 miles  it's amazing how good your arthritis can feel with mega steroids!  I get acupuncture every week and do guided imagery relaxation exercises every day.  M journaling on my CaringBridge site and have a huge amount of support from friends and family  I'm blessed  

So, I'm still kicking.  Just want you to know that for some of us, the chemo so far has been managable.  I'm just praying it works.  I was Stage IIIc, Grade 3 Endometrioid adenocarcinima.  Total abdominal hysterectomy and DaVnci March 17, 2016.

 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

My doc says my sugar jumps because of the steroids and not to worry about it. I have my 6th and final chemo today. Good luck with yours:)

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Hey CheeseQueen - so glad to hear from you! It sounds like you are tolerating the chemo well. I hope you continue to do so. Impressive on your walking! I wasn't able to go for more than a mile at anytime during chemo.

Soup - Congrats! You made it. Last one. Time to celebrate in about 3 weeks once you get past all of the junky days. And, you get to watch all of your hair come back in! :-)

Love and Hugs to you both,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Soup, congrats on making it through all of your chemo treatments! Hopefully you do something wonderful to celebrate!!

What are the next steps for your treatment?

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Cheese, glad to hear that your treatments are going well and that you are feeling fit and strong!

I agree that you should definitely talk to your doctor about the blood that you found. Also, watch for infection as the applicator may have "nicked" you and your body may have a hard time healing during treatment.

My port incision took quite a long time to heal, too. They had to stitch mine because I had a reaction to the surgical glue they used for my surgery. The last stitch eventually came off after about 9 weeks.

I recall there being a few posts about the DaVinci surgery and its affect on eyes a few months ago. They might have some useful information if you want to scroll through the older posts?

Wishing you well on your treatments and continued strength and healing, Kim

 

 

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

A year ago today I began my chemo treatment. It's hard to believe it's been a year. When I look back, I can't believe I went through all of it: the surgery, the chemo, the stroke, the swelling of the optic nerves, the external radiation, the internal radiation and the pelvic fracture. And I'm still kicking (although not as high!). It's really true that you are stronger than you know. I feel I really should have something profound to say but I'm just really thankful that I just survived all that and am eager to put it all behind me. Thanks be to God, I've got my life back again. 

 
 It will never be really behind me, but I'm getting better about not worrying about it all the time. On Monday, I have an appointment to get my port flushed and see my radiologist oncologist. When I asked how long I would have my port at my last appointment, the answer was, "Indefinetely."  The port, my surgery scars, and my radiation tattoos are constant reminders of from where I have come. 
 
I still suffer a few residual effects. Toes are still numb. My eyes are not 100% (it's been 9 months!) but they are so much better and I'm driving and reading books again. I'm still suffering with bladder issues and am consulting with a pelvic floor physical therapist (which wasn't as awful as I anticipated!). So slow but sure, I'm finding my new normal. I'm trying to attend my "old lady" aerobics 3 times a week and just signed up for once a week "old lady" yoga. They offer Zumba but I'm so uncoordinated now that I think I'd only embarrass myself. 
 
So, I'm looking forward to a spectacular summer.  In a couple weeks, we're going to see Madame Butterfly at the Kennedy Center. I'm so  excited not only to see the opera but to see the Kennedy Center.  And before I know it, we'll be cruising to Alaska. 
 
I'm so thankful for all of the support I've had in this past year from all of you.  As I read through this thread I truly believe I would not be here today but for the support of this group (along with my family and friends). I will be forever thankful for each and every one of you who read this and especially to those who supported me who sadly are no longer with us. 
TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

yep.... couldn't have said it better! :-)

I am 16 months out from chemo and 15 months out from radiation. I still have a bit of numbing but nothing that causes me any limitations... I noticed another level of improvement at the end of 14 months. I think I'm at my new normal now which is pretty darn good. So happy to hear of your improvements. You know all of your friends here are celebrating right there with you!

Enjoy your Summer and have a blast on your Alaska trip.

Love and Hugs,

Cindi

janaes
Posts: 800
Joined: May 2016

Hey Cheese Queen.  Yea you made it this far.  I wont forget when I started chemo.  It was the week after my birthday in June.  Im glad you are forgetting cancer more and more.  Thanks for checking in.

Love, Janae

Nellasing
Posts: 529
Joined: Oct 2016

What a difference a year makes ehh?  So HAPPY to celebrate this milestone with you and so HAPPY to hear that you are feeling better little by little and finding your new normal.  Tomorrow marks one year since my surgery!  I'm with you- wish I had something profound to say, but again, with you, just happy to be here!  Blessings in this new year of life - have fun in your new exercise classes, enjoy the opera and what a trip you will have to Alaska --- enjoy the journey (((HUGS)))

sshhaarrii
Posts: 38
Joined: Oct 2016

One year anniversary is something to celebrate, for sure! I hope you have a wonderful summer. One word that seems to stick in my head is "unreal". Everything that has happened seems more like a dream, now. And I'm only a few weeks out. It's funny how the mind works to block out those unpleasant memories.

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Every once in a while, it's good for each of us to look back and see how far we have come. All that we have experienced or are currently experiencing - the good, the bad, the ugly. It's all important and profound. 

Congrats to you, Susan! I hope you continue to celebrate every milestone and make tons of happy, wonderful memories for years and years to come! Kim

janaes
Posts: 800
Joined: May 2016

Nellasing  We were really within days of each other when it comes to our timeline.  I just looked at my calender today and tommarrow marks one year since my surgery. 

Nellasing
Posts: 529
Joined: Oct 2016

So many of us - it's like going to school together- wish we were all close enough to meet- I hold you all in my heart  (((HUGS)))

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