Roll Call For UPSC only

pinky104 said:

rdt4

Everyone is different in their reactions.  Her hair will most likely fall out within the next two weeks, usually after 11 or 12 days.  I was never sick with nausea or vomiting, but I was given a drug called Emend for the two days before chemo and the first day of chemo which helps prevent those things.  She should ask her doctor about prescribing that if he or she hasn't already.  When the procedure started, the nurse put Benadryl and Decadron into my port.  I felt high, like I'd had a couple of drinks.  Eventually that wore off after a few hours.  It took about 5-1/2 hours for the whole procedure each time, longer than I had expected.  The first time, the nurses do some explaining, too, so it may be a little longer for that reason.  I can't say I had any real side effects the first time I went.  After the second time, I got some mouth sores.  My oncologist gave me a mouthwash which cured them pretty fast, in two or three days.  It would be good to avoid hot, spicy food as that makes it worse.  About halfway thru my 6 chemo treatments, I started losing my appetite and then I got very short of breath.  I had to stop and rest if I walked through a store.  I got very pale looking.  I refused the Neulasta shot I was offered because it had a risk of heart attacks and my younger brother had just died of one the week before.  Instead, I took a blood transfusion. I did have a lot of UTI's, but I'm prone to them anyway, and losing the immune system with chemo doesn't help any with fighting them.  I had been fearful about chemo from what I'd heard about it, but it was much less problematic than I had expected.  I'm sure other people had different experiences.  The people who took the shot have complained a lot about bone pain, and some were fatigued.  I'm sure you'll get some difffering versions of other people's journeys through this treatment.  She should know that it's best to avoid sick people and avoid being around a lot of people so she doesn't have her immune system compromised any more than it already will be.  I was lucky enough to be able to stay out of work so I wasn't at increased risk.  I worked in an ER so I could've caught any number of things if I'd been required to work.  Thank goodness for disability insurance!  

Rdt4, the only thing I would add to pinky104's post is that your friend is likely to feel quite good during the day of chemo and the day after due to the many drugs she will be given during infusion. However, the next 3 to 4 days were the most difficult for me as I did have bad bone pain from my hips to my knees. I really ached and found it difficult to eat or sleep. My oncologist warned me that I might have a couple days of feeling like I had the flu, but this was much worse than any flu I've ever had. Fortunately, it then went away and I felt pretty good until the next round. My blood counts went low each time, but recovered in time for the next session. I was never offered, nor did I have, a Neulasta shot, but I still had the extreme bone pain. I also have a bit of neuopathy in my fingers and toes, but this has definitely gotten better lately. I will be seeing my oncologist this coming Friday for my first three month surveillance checkup since ending chemo. I fully anticipate being told NED!

Maggie_mac said:

Hello Sisters

I haven't posted since before Christmas when I was about to begin with Doxil.  I had done 3 rounds of 6 with carbo/taxol before I became platinum resistant.  I tried Doxil for three rounds and my CA 125 doubled after each infusion.  I went from 72, to 165, to 325.  Obviously that wasn't the treatment for me.  In early March I started on Avastin/Cytoxan and have had three  infusions.  My CA 125 dropped from the 325 to 245 but then the progress slowed down and my last count was 234.  I figure that 5% drop could easily be lab error, but since it is in my favor, I will continue with that cocktail.  I'm concerned that I'm running out of options.  Having completed 24 chemo infusions, I'm considered one of the senior members of the infusion center.  The good news is this is the first April since 2011 that I have had hair!

I am most interested in hearing about any other therapies and the results.  I wish you all peace and happiness.

 

Maggie

   

Your journey isn't unlike mine.  I was Dx in Feb 2013 and UPSC was confirmed in April 2013 post surgery.  Had six carbo/taxol treatments, 28 topical radiation, three brachytherapy.  Progression and mets were found at my first three month checkup.  Had four doxil treatment and mets continued to grow.  Just had my 11th avastin treatment and learned  four weeks ago that my,tes continue to grow.  I was accepted into a clinical trial for Cabozantinib but rejected at the last minute due to a met resting on my heart.  That trial is having great results.  I am now being considered for a phase I trial for BMS-9811465 which goes after a mutation in my tumors pathways.  This is in expanded phase I status.  I also had genome testing using some of the original tumors/tissue from my original surgery which is helping doctors to identify the right trials etc.  Note that this isn't the same as genetic testing via a blood draw.  

There are other options out there for those of us who are chemo/platinum resistant.  I am lucky, my doctors haven't stayed inside the box from day one.  The trials aren't just for uterine cancer but a variety of cancers with common cellular makeup.  You can do this!  i am living fully and enjoying life!  Stay strong and thrive - Anne

Are you sure that your condition means bad news?  In my experience in working in an office job at a hospital, I've heard the word "implant" used for something a doctor (or dentist) puts into you to help you out.  For example, dentists use dental implants to hold in teeth they are replacing.  Gynecologists insert birth control implants.  I, myself, had an implant of mesh to fix an incisional hernia I got from having my cancer surgery (combined with gallbladder and appendix removal at the same time).  The mesh helps keep the hernia from coming back if I exert myself too much while lifting something excessively heavy.  

I'm not sure if there is another meaning to the word, but I wonder if you're worrying needlessly.  Let us all know after you have your next appointment. 

marieinlv said:

checking in

I'm Marie, DX was 11-17-10 at 52 yrs old, UPSC stage 1V, 6 rounds chemo(carbo/taxol), finished 5-2010, ca-125 stays normal between 4-7. NED and humbled.

You are doing great! Thanks for giving all of us UPSC ladies hope for a long future!

pinky104 said:

Marieinlv

I've been trying to figure out if anyone has survived UPSC with stage IV longer than I have and is still NED.  You said you were diagnosed on 11-17-10, which is after I was diagnosed, but then you say your chemo was in 5-2010, which is before your diagnosis.  Could the 5-2010 be 5-2011 instead?  I was diagnosed in late March of 2010 after having a D&C to remove a bleeding polyp, had my surgery in May, 1010, and chemo after that up through Sept., 2010.  I'm just curious to find out where you stand in relation to me for survival time. I've been asking if anyone has survived with stage IV longer than I have for awhile now, and nobody has come forward who has survived this stage longer.  There are a few people who are right behind me.  Anyway, congrats on being NED for so long wherever you stand in relationship to me for survival.  We're apparently a rare breed in this group of women with this aggressive cancer.

I was diagnosed about 17 months after you (10/2011), but have never really been NED.  I did the 6 sessions of carbo/taxol 3 times followed by doxil, then Avastin/cytoxan, and this Friday we're going to topotecan.  This one is once a week for 3 weeks, then a week off before starting the series over again.  I think this Friday will be chemo #26.  I haven't had a scan in over a year because as my CA125 climbs, nothing shows up.  Current CA125 is 437, 8 months ago it was 30.   It seems the cancer is in the peritoneal fluid...nothing to radiate or remove.  My oncologist is arranging a meeting with the genetic counselor.

Overall I feel pretty good.  I would like to hear from anyone with similar experience.

Bless you all,

Maggie 

Sandy3185 said:

Sandra, Winter Haven, Fl 67

Sandra, Winter Haven, Fl 67 at diagnosis 12/05/13, after surgery at Moffitt Cancer Center in Tampa,Fl-UPSC stage 2 grade 3, completed all trestment 6/17/14, currently NED, last CA125 July 16th 4.0!! I had 3 rounds of Taxol/Carboplatin then switched to Toxotere/carboplatin due to increasing neuropathy in legs, feet and hands. Also had 3 rounds of internal radiation.

I am feeling really great now. Finally recoverd from treatment and have a lot of energy and getting back to my old routines and interests. I will see by onc/gyn in Spetember for my first follow up.

Sandy, Is your gyn/onc at Moffitt?  May I ask who it is and if you like them?

Thanks so much.

Ro10 said:

UPSC Stage 3-C

At age of 60 I Had surgery 1/09.  No symptoms.  Had abnormal PAP.  Had robotic surgery.  5 of 25 lymph nodes positive as well as positive abd wash.  Had sandwich treatment of Taxol /Carbo with 28 external treatments  and a 28 hour internal treatment.  Had reaction to Taxol within first few minutes.  Can only get Taxol at very slow rate.    CA125 began to rise as soon as chemo stopped.  Have never been NED.  

Had 18 months before 2 nd chemo and CA125 raised to 1700. No symptoms, CAT showed increase in multiple lymph nodes.    Had reaction to Carbo during 9 th treatment.  Switched to Cisplatin..had Total of 7 treatments this time.  Had only 7 months before 3 rd chemo and CA-125 rose to 3200.   No symptoms, CAT scan showed increase in multiple lymph nodes.   Had 6 more Taxol/ Cisplatin.  Finished chemo 5/12.  Due to reactions to both drugs It takes me two days to receive the chemo.

When I recurred after only 7 months, I asked if the recurrences would occur in shorter time periods.  The nurse practioner said they usually Do.    I am glad I proved them wrong. 

 Developed bilateral lung clots in 1/12.  No symptoms.  Found on CAT scan.   Have been on daily blood thinner shots since then.   Started Aromasin after 3 rd chemo. 

It has been 27 months since my last chemo and currently CA -125 is 1582.  The latest CAT scan shows only  one lymph node enlarged in mediastinal area.  Waiting for news if I am a candidate for cyber knife or surgery to remove lymph node.  The node is in front of the trachea, so neither maybe possible.  If I can't have either I will continue to be in observation, but I know chemo is in the future.

Because we winter in Florida I had my surgery and first three chemos at Moffitt Cancer Center in Tampa, Florida.  I had my radiation treatments and last chemo at Quincy Medical Group Cancer Center in Quincy, Illinois. 

For the other rounds of chemo I had the first three at Moffitt and the last ones in Quincy.  both of my doctors say the CA-125 is only a number.  They wait for symptoms.....which I have never had.....or changes in the CAT scan......which I have had 20 since 2009.   I expressed concern over so many scans, but they said the risk of the UPSC spreading is higher than the risk of the radiation from the CAT scans.

i have learned not to stress over the rising of the CA-125 and celebrate the small increases I have had since being on Aromasin.  So it's been 5 years and 7 months since diagnosis, but never NED.  The doctor told me initially my UPSC was not curable, but treatable like a chronic disease.  I am fortunate my recurrences have stayed in the lymph nodes, and I can still receive Taxol/ Cisplatin.  

When I signed on to this site I was the 10 th person to sign on thus the name Ro10.  My name is Roberta, but my family always called me Ro since I had a twin Robert.   It will be interesting to see how many more UPSC sisters we have now.  I am sorry there are so many of us.

Hi Ro,

I'm very new to the cancer world.  I noticed you used Moffitt.  My local Oncolgist wants me to go there for my GYN-Oncologist. 

Would you be comfortable sharing your experience there?  And, did you have a GYN-Oncologist there?

My pathology report from my D&C and polyps is not promising.  It has been sent to the University of Florida for a second opinion.

I go in for my PET Scan tomorrow.  Then will meet with the Oncologist next Monday. 

I want to thank you and all of the other brave women on this sight for sharing your experience.  I found it last night and spent hours reading the other thread. 

I'm grateful to know there is a place to come ask questions.  I have many.  And, I'm trying to wait until next Monday to get some answers before I post my story.

Thanks in advance for your input and wisdom!

Cindi

Ro10 said:

Cindi welcome to this site

I am sorry you are joining this " sisterhood". That none of us would willingly chose to be part of.   This is a great place to come and ask all the questions you may have.   Someone probably has had that same question Themself.  

My experience with Moffitt has been very positive.   I did have a gyn/ Ono do my surgery.  He has continued to follow my treatment since I had my surgery in 1/09.  My doctor is Sachin Apte.  He has always taken the time to answer questions.  He believes quality of life is very important.   He has never rushed me into treatment.

my only complaint would be that it is such a large facility, that you wait time for labs, tests, or appointments can be long at times.   The cancer center that I go to in Illinois is much smaller and I feel like the care is more individualized.

Moffitt has tele- talks weekly.  I have heard other physicians speak.   They seem very competent also.   So I would definitly recommend Moffitt.  I know a few other ladies have gone to Moffitt for second opinions.  I think they were pleased with the doctor they went to.

come back with any questions you may have.  Again I am sorry you have to join us on your journey.   In peace and caring.

Ro,

Really appreciate the feedback.  It helps to "know" others that have experience with the doctors.

I had a PET and CT scan yesterday.  While I don't get the official results until Monday, the technician showed me the results. Things look promising but he said he is better at reading the PET than the CT so I need to wait to get the full picture.  Either way, it was nice to get some good news to carry me through the next several days.

Sandy also provided me some great feedback.  I'm grateful to both of you.  It will help me going forward for sure.

Thanks again,

Cindi

ybrlabs said:

4 years later

Sandy, Jefferson, MD, 43 years at diagnosis.,UPSC (don't know what stage, I didn't want to be told because I work in medical research and would have driven myslef crazy researching articles), treatment at Sinai Hospital, Baltimore, MD, radical hysterectomy followed by robotic surgery to remove more of cervix, no chemo.  NED for 4 years in November.

4 years NED is something to celebrate.   It is great you did not need chemo.   Enjoy each day.  In peace and caring.

ybrlabs said:

4 years later

Sandy, Jefferson, MD, 43 years at diagnosis.,UPSC (don't know what stage, I didn't want to be told because I work in medical research and would have driven myslef crazy researching articles), treatment at Sinai Hospital, Baltimore, MD, radical hysterectomy followed by robotic surgery to remove more of cervix, no chemo.  NED for 4 years in November.

Congrats, Sandy!!!!  Love your dog!