Chemo Combination and RT Effectiveness (Roll Call for All)

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)

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

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

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.

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.

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

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.

) 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