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Chemo Combination and RT Effectiveness (Roll Call for All)

rcdeman
Posts: 256
Joined: Aug 2016

Hi, I just wanted to start a thread (I'm not sure there is already one) where people who have or had been diagnosed with any stage of Uterine Cancer can list the chemo combination treatments and other treatments they've gone through and how effective it is/was.

A good format would be:

1) Type of Uterine Cancer
2) Stage, Grade
3) Which chemo drug combinations were you on? And were they effective? (Could be more than one combo) Any side effects (long term or short term)?
4) How many rounds of each? What was the format of your chemo cycles?
5) Did you have any other treatment(s) beside chemo? And how effective where they? (Ex: external RT, internal RT/vaginal brachytherapy, etc.) Any side effects (long term or short term)?
6) Are you NED after these treatments?
7) Did you take any supplements or medication during chemo or RT? Are you taking any natural supplements now during NED? If so, what kind? (optional)
8) What is your day-of-the-mill diet like?

This would be a huge help to me as I am researching chemo combinations and what would be best for mom who was diagnosed with UPSC IIIC just recently.

Thanks!
Rebecca

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Here are my answers, I hope they are helpful:

1.  Small-cell undifferentiated carcinoma of the uterus back in 2009.  I was told it was very aggressive, rare, and that I had 3 completely different kinds of cancer cells and they based the treatment plan on the most aggressive of the 3 kinds.  Still think it's weird that I got it, no one in my entire family had.

2.  Not sure about the stage, 2 or 3?

3. Several chemo drugs, Cisplatin was the main one I believe.

4.  I can't remember the number of rounds but do know they treated me immediately with both chemo and radiation together, then surgery after the tumor shrank, then follow-up chemo.  I began in July 2009 with chemo and external radiation weekdays until two weeks before surgery in late October, then had my surgery, then follow-up chemo.  I was done with chemo in December 2009.

5.  Other treatment in addition to chemo was external radiation and internal radiation (3), and surgery.

6.  Yes  :0)

rcdeman
Posts: 256
Joined: Aug 2016

Thanks, this is helpful, survivingsu. I am hoping this thread can become something like a useful database for all those who are and will be going through this.

EZLiving66's picture
EZLiving66
Posts: 1295
Joined: Oct 2015

Here's my info - sure hope it helps!!

1) Type of Uterine Cancer - UPSC
2) Stage, Grade - Stage II, Grade 3
3) Which chemo drug combinations were you on? And were they effective? (Could be more than one combo) Any side effects (long term or short term)?  Taxotere and Carboplatin.  It almost killed me.  I only made it through three infusions.  My port never healed and after two months of fighting the infection, my doctor took it out.  Took another two months to heal. If you look at the list of possible side effects for Taxotere and Carboplatin I had everyone except mouth sores and death (last December they added permanent hair loss to the Taxotere and luckily for me, my hair came back although it took three months to start growing after the last chemo.)
4) How many rounds of each? What was the format of your chemo cycles?  Every 21 days - only made it through three rounds
5) Did you have any other treatment(s) beside chemo? And how effective where they? (Ex: external RT, internal RT, vaginal brachytherapy, etc.) Any side effects (long term or short term)?  I asked my doctor about radiation and he said "No." (He was NOT a good communicator AT ALL).
6) Are you NED after these treatments?  So far, yes.  I had two CT scans before I started chemo to look to see if the cancer had spread but they couldn't find any.  At my three month checkup, I had been experiencing some vaginal bleeding so my oncologist's PA who does the exam, had the oncologist check it out.  They thought it was just some scar tissue that ripped - I tend to scar very easily.  At the six month checkup, the PA did the exam and thought everything looked fine.  My nine month checkup is coming up at the end of this month.  I'm also going to ask her about having a colonoscopy.  I've had a virtual one done and they found I had some diverticulosis.  Since I was 12 years old I've had IBS with diarrhea made worse with stress.  Since chemo it has gotten much worse to a point it has greatly affected my life.  I take life one day at a time.  Some days I'm good; some not so good but I'm happy.  I believe the cancer will come back but hopefully when it does, there will be other treatment options besides chemo.

Good luck!!

Love,

Eldri

Soup52's picture
Soup52
Posts: 881
Joined: Jan 2016

1. Clear cell endometrial cancer

2. IIIC

3./4.carbo and taxol every 21 days   6 rounds Neuropathy in my feet still present

5. I had surgery first, then 5 weeks of external radiation, followed by 3 internal/brachytherapy one week apart. I have bowel issues that were believed to be caused by the radiation and have been told these may last forever. Not a pleasant after effect, but I have many good days.

6. My first scan end of June this year and I am NED. I will meet with oncologist in October and then have another scan hopefully in December.

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Serous Adenocarcinoma - Stage 4

Dx Jan 2015

1. Total hysterectomy and omenectomy, BSO - the works - Feb 2, 2015

2. 6 rounds Taxol/Carboplatin combo every 3 weeks - fatigue, treatable nausea, premedicated with steroids to avoid reaction to Taxol

3. Scan at 8 months - showed clear

4. Scan at 10 months showed recurrence in several lymph nodes

5. Changed doctors - now at Roswell in Buffalo - a cancer research hospital

6. 4 rounds doxorubicin alone -one infusion per month - no reaction but mouth sores and skin rashes

7. Scan Feb 2016 - showed mixed results

8. Chemo switched to Carboplatin/Gemzar - no problem with first round - severe reaction on second round to carbo (passed out coded and went to ICU) - apparently reached my lifetime limit of carbo and now considered a severe allergy to it

9. Chemo switch to Cisplatin/Gemzar - less severe reaction to Cisplatin, flushing and heart racing, but changed again

10. Taxotere/Avastin 3 rounds - infused every 3 weeks - no reactions - side effects: fatigue - plus added 500 mgs of metformin daily orally

11. Scan - mixed results again - lymph nodes showing problematic in axillary and left breast 

12. August 12th to present - no chemo - being considered for NCI-Match trial (have to be off chemo)  - awaiting breast biopsies to determine if I have another primary cancer happening or still uterine metastisized to breast. If still uterine, I can continue to apply for clinical trial. If another primary, then I will have to fight that monster as well and not eligible for trial. In which case, topotecan will be on tap for the uterine side of things.

13. Waiting for breast biopsy results - learned I have BRCA2 mutation from most recent genetic testing on axillary nodes.

After writing all this down, I am encouraged at how resilient and tough our fragile bodies are. We are truly warriors ALL. I am 58 and plan on outrunning this insideous disease. Your mom can too - In the words of CS Lewis, "Courage Dear Heart".

xoxox, Billie

cindy0519
Posts: 173
Joined: Nov 2015

1) Type of Uterine Cancer - UPSC
2) Stage, Grade - Stage IIIC1 Grade 3
3) Which chemo drug combinations were you on? Carboplatin and Taxol And were they effective? (Could be more than one combo) Yes, thus far! Any side effects (long term or short term)? short term - diarrhea, nauseau, stomach cramps, bone pain, constipation, exhaustion, neuropathy (short and long term though long term neuropathy is not every day - it comes and goes as it pleases)
4) How many rounds of each? 6 rounds of each drug  What was the format of your chemo cycles? Infusion every 21 days (every 3 weeks)
5) Did you have any other treatment(s) beside chemo? 28 external tomo radiation treatments And how effective where they? (Ex: external RT, internal RT, vaginal brachytherapy, etc.) Any side effects (long term or short term)? diarrhea, nauseau, exhaustion.  No long term side effects thus far
6) Are you NED after these treatments NED as of June 30, 2016 scan.  3 month check up on Oct 3 (yikes)

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

1) Type of Uterine Cancer - Clear Cell Endometrial

2) Stage, Grade - Stage 2(spread to cervix),  Grade 3

3) Chemo drug combination Taxol and Carboplatin, side effects - bone pain and neuropathy, still have some neuropathy in toes 4 years later

4) 6 rounds, infusion every 21 days

5) I had three brachytherapy treatments before chemo. After cancer in my upper vagina was discovered I had it treated with a laser and had 28 external radiation treatments. Had diarrhea the last 2 or 3 weeks of radiation

6) NED since the external radiation 3 years ago.

ncg007
Posts: 130
Joined: Nov 2015

1) 50/50 mix Endometrioid and Serous Adenocarcinoma (Diagnosed June 2015)

2) IIIC1, Grade 3

3) Cisplatin, carbo/taxol

4) 2 rounds Cisplatin every 3 weeks + 4 rounds carbo/taxol Targeted every 3 weeks, but some cycles were 4 weeks out due to both RBC & WBC issues.  (Completed Feb 2016)

5) 28 External Radiation treatments also started on first day of Cisplatin.   Extreme Neuropathy set in a few weeks after completed all treatments, still struggeling with it 6 months later.

6) No

7) Neulasta,  vitamin B, D, Iron, Multi-vitamin, Claritin, Magnesium, Gabapentin for Neuropathy

8) No special diet

 

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

1) Type of Uterine Cancer: Carcinosarcoma (aka MMMT)
2) Stage, Grade: Stage 1b, Grade 3
3) Which chemo drug combinations were you on? And were they effective? (Could be more than one combo) Any side effects (long term or short term)? Taxol-day 1 & Ifosfamide/Mesna-days 1-3 / No major side effects just the normal ones you'd expect.
4) How many rounds of each? What was the format of your chemo cycles? 6 rounds (3 days each), 21 day cycles, with external radiation sandwiched between the 3rd and 4th round.
5) Did you have any other treatment(s) beside chemo? And how effective where they? (Ex: external RT, internal RT/vaginal brachytherapy, etc.) Any side effects (long term or short term)? 28 external RT / No major side effects just the normal ones that you'd expect.
6) Are you NED after these treatments? Yes
7) Did you take any supplements or medication during chemo or RT? Are you taking any natural supplements now during NED? If so, what kind? (optional)  I continued taking my calcium vitamin and my allergy medicine (Claritin OTC) during treatments. I also took a probiotic during radiation.
8) What is your day-of-the-mill diet like? No wheat but I eat everything else. I try to stay between 1,200 and 1,500 calories per day to maintain my weight.

rcdeman
Posts: 256
Joined: Aug 2016

Thanks All! This is so helpful! Keep the replies coming! :) Just an update: My mom and I will be seeing her gyn/onc tomorrow to discuss the treatment plan for her UPSC IIIC. I'm so nervous and although I do have some questions written down, I can't help but think I'm missing something. :(

Rebecca

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

Serous papillary Endomedrial andocarsinoma

stage IV high grade

radical hysterictomy October 2012

sandwich treatment starting November 2012.  3 rounds taxol/carbo 28 external radiations, 2 external radiation and 3 more taxol/ carbo treatment,

NED for 7 months. Metastisis to my neck, liver and abdomen

5 rounds of taxol/ carbo... Dr. stopped treatment at 5 instead of 6 because  my blood counts were so bad and I was back at NED  this time it lasted for 4 months.  Matastisis near my heart in between m intestines

4 rounds of Taxol/ carbo  Last two I had a reaction to the carbo  two more taxols by itself  without the carbo it didn't work at all

7 rounds of Doxlrubicin  worked on small tumors let large one intwine inself in my intestines resulting in open bowel resection.

7 more rounds if taxol/carbo with a carbo,desenstizing program  they ran it over a7 1/2 hour period  round 7  I had another reaction to the carbo so it was stopped  it was working but very slow.

2 rounds of Topotecan  didn't work at all

2 rounds of Avastin which was a genomic match for me, and was working  it caused a heart attack.

i am now an immunotherepy drug called Keytruda  don't know yet if it isworking, but I feel better than I have in a long time..  My doctor is encouraged by the way I feel and look.  I have no side effects from it so far and I will be getting round 4 on Monday

side effects from taxol/carbo were mainly fatigue and bone pain some constipation nd lack of appetite, heart burn

doxil  fatigue, Nausia lack of appetite, heartburn

topotecan...fatigue, nausia, lack of appetite. Heartburn.  Blood counts so low I had two blood transfusions

 Avastin ..  Fatigue, heartburn and of course, a heart attack

Keytruda  no side effects 

I am not NED at this time

i took and am taking vitamins, B complex, C, D,and multi, a probiotic, Claritin, mega red , a stool softener, and when I need it, Myralax.

I eat anything I want that I can stand. My appetite is still terrible

hugs and prayers to.all, Lou Ann

rcdeman
Posts: 256
Joined: Aug 2016

Prayers and hugs to you, Lou Ann. You are amazing. I pray this immunotherapy continues to make you feel better.

Soup52's picture
Soup52
Posts: 881
Joined: Jan 2016

Hugs and prayers to you Lou Ann!

christine8822
Posts: 36
Joined: Mar 2016

1) Type of Uterine Cancer: Endometriod adenocarcinoma (Type 1 cancer)
2) Stage, Grade: stage 2, grade IIIC
3) Which chemo drug combinations were you on? And were they effective? (Could be more than one combo) Any side effects (long term or short term)? Had "sandwich treatment July-Dec 2015, paclitaxol/carboplatin every 3 weeks, 3 times, then 25 external beam radiations, then repeat the chemo. Never had to interrupt treatment due to side effects, but they weren't fun. Side effects of chemo: tired, constipation, hair fell out, felt pretty crummy. Side effect of radiation: intestinal cramping, diarrhea, tired. However, I kept working throughout, about 50% speed, about 5 hours a day or what I could manage. It made the time go faster. LONG TERM SIDE EFFECTS OF CHEMO/RADIATION: peripheral neuropathy, both feet, but feet are functional. Still some cramping in the intestines and touchy IBS type system, probably due to radiation damage of intestines, but they are working. 
4) How many rounds of each? What was the format of your chemo cycles? see above
5) Did you have any other treatment(s) beside chemo? And how effective where they? (Ex: external RT, internal RT/vaginal brachytherapy, etc.) Any side effects (long term or short term)? External radiation, see above.
6) Are you NED after these treatments? yes, since Dec. 2015. CT scans in January and July were clear. Another dr. visit October and next scan January 2017.
7) Did you take any supplements or medication during chemo or RT? Are you taking any natural supplements now during NED? If so, what kind? (optional). Was careful NOT to take antioxidents or major vitamins during chemo/radiation. I just took one plain multivitamin with 100% or lower daily RDA every day. Took one baby aspirin every day. Took 4,000IU Vitamin D daily during winter and 2,000 IU in summer, on advice of radiation oncologist. Still take all these things, no more.

8) What is your day-of-the-mill diet like? Very changed from before. After constipation/diarrhea cycle for months where nothing worked right, i am super careful about what I eat, but try to eat variety of foods. Keep something in your stomach. I eat 1/2 to 1 KIWI every day. It helps with constipation very well (studies have found it valuable). I drink one smoothie daily made of rasberries, blackberries, avocado, flaxseed, lemon, cranberry sauce, water and cinnamon. I found the recipe here on the boards! I feel better when i drink that daily. 

ONE MORE THING: I have walked every single day since my hysterectomy in June of 2015 and throughout treatment. Not by distance, just time. I started with walking 5-10 minutes, slowly, 2-3 times a day. and just did what I could on my worst days through chemo. Now it's Sept. 2016 and  I walk briskly about 40 minutes a day, separating it into two 20-minute walks. I do not measure distance, so I just do what I am feeling like that day, slow or fast. I just like being outside. I also do water aerobics once each week and just started tai chi. EXERCISE is so important to rebuild your body and muscle mass. It is also so beneficial for my mind.

Oh, and one more thing. I don't know if anyone else had counseling during treatment but I found a good therapist experienced in cancer counseling and I went to private therapy for nearly a year. I finally have "graduated".  I could not have gotten through the process without my counselor. 

 

Hope this helps. 

rcdeman
Posts: 256
Joined: Aug 2016

Thanks for your response, Christine!

I think I will incorporate your diet plan for my mom in the future. The smoothie sounds good and the kiwi is certainly something that could help out if she experiences constipation.

Love,
Rebecca

Soup52's picture
Soup52
Posts: 881
Joined: Jan 2016

Hmm. Interesting to hear about kiwi. I will have to try it as I too have the constipation issues.

Red Dahlia
Posts: 16
Joined: Apr 2016

Diagnosed September 29, 2015, radical hysterectomy October 5th 2015  Had bleeding since end of July that was diagnosed after ultrasound as fibroids.  After I requested treatment for fibroids, radiologist requested MRI before he proceeded.  MRI suspicious for maligancy.  Went to large center for follow up where the diagnosis was made the same day from a biopsy.  As a side note in Sept. of 2013 a Pap smear showed endometrial cells.  A biopsy was done, but was told it was normal because I hadn"t gone through menopause yet.  History of heavy periods and clotting and clear discharge in between.   I think the abnormal PAP was probably the start of the cancer. 

2)Stage 3 Grade 2 Endometroid Type
3) Taxol/Carboplatin  Reaction to Taxol at first treatment...needed to be desensitized and then no further reactions,  otherwise bone pain day four and five of all treatment which decreased after I started accupuncture. Constipation after treatments one and two,  one week wait for last treatment because of low platelets, no long term effects
4) 6 rounds total ; sandwich approach :  3 rounds chemo, once every 3 weeks followed by radiation and then three more rounds of chemo 
5) 28 external radiation; no side effects( I did lose feeling of having to void and alsohave to  self-cath due to urine retention from side effect from hysterectomy, so may attribute to not having bladder symptoms) 2 Brachytherapy(side effects:  painful cathing, one bout of lose stool,  long term: more frequent BM, but normal
6) Have been NED since surgery
7) Took VitD, Vit C, magnesium; both magnesium calm and a foot soak and drank a fermented drink(beet kvass) throughout all treatments.  Now I take liposomal vitamin c, 750 curcumin, cranberry pills, magnesium and Vitamin D  Also do weekly accupuncture
8) I eat as much organic as possible, no sweets, mostly vegetarian.  In the last few weeks I have changed this after visiting with a nutritionist who put me on a diet she would give an active cancer patient to help heal my body.  It consists of a protein source(low fat meat, fish or egg at each meal,  Legumes , and garlic and  several other vegetables.  I'm feeling well on this.

Purplelady80
Posts: 4
Joined: Mar 2018

1) Type of Uterine Cancer - advanced endometrial cancer of the endometrioid histologic subtype, specifically stage IIIC1, grade 2.  Full Robotic Hysterectomy with ovaries and Tubes on February 20
2) Stage, Grade - Stage IIIC1 endometrioid endometrial cancer
3) Which chemo drug combinations were you on? Still on:    pelvic radiotherapy and chemotherapy in a sandwich fashion with carboplatin and paclitaxel x 3 cycles, followed by RT, then additional carboplatin and paclitaxel   As of today I have made it thru the first 2 Carbo/Taxol.  First one had Neulasta on pro and the pain that ensued was horrific.  Second round no Neulasta still had pain by day 4 in knees and then settles in Feet but at least manageble with ice.        Third cycle next Tuesday May 29th.  currently my WBC are low but should be better by next Tuesday.
4) How many rounds of each? What was the format of your chemo cycles?  3 rounds Every 21 days    then 5 1/2 weeks of RT  then another 3 rounds every 21 days
5) Did you have any other treatment(s) beside chemo? And how effective where they? my DR because of the foot pain is considering giving me cisplatin at beginning and in middle of RT and maybe scrapping the last 2 rounds of Carbo/Taxol.     Also gave me a prescription for cannibus so I can use for those bad 5 days of feet pain
6) Are you NED after these treatments?  N/A   had CT scan at beginning and nothing, CT scan before RT which is in 4 weeks.    

 

barnyardgal
Posts: 174
Joined: Oct 2017

) Type of Uterine Cancer:   Endometrial adenocarcinoma
2) Stage, Grade 3a, grade 2
3) Which chemo drug combinations were you on? And were they effective? (Could be more than one combo) Any side effects (long term or short term)?  Tried taxol/carbo but had bad reaction. Desensitization didn't work. So had 6 rounds of adriamyacin and carboplatin. 1-2 more planned as I just finished radiation. I had hysterectomy in early October 2017. Currently NED. Side effects were nausea, low blood counts, some fatigue. All gone.
4) How many rounds of each? What was the format of your chemo cycles? Protocol for adriamyacin is 6-8 cycles every 21 days. I've had 6, and the oncologist would like me to have 1, and maybe 2 more.
5) Did you have any other treatment(s) beside chemo? And how effective where they? (Ex: external RT, internal RT/vaginal brachytherapy, etc.) Any side effects (long term or short term)? Just finished 25 rounds of external radiation. Side effects were a little cystitis and diarrhea. Some fatigue which hit at the end. When I get tired I get nauseated,  but I just finished Friday and side effects are resolving.
6) Are you NED after these treatments? Yes
7) Did you take any supplements or medication during chemo or RT? Are you taking any natural supplements now during NED? If so, what kind? (optional) Vitamin, probiotic
8) What is your day-of-the-mill diet like? Low carb, very little red meat

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