Roll Call For UPSC only

Hi there ladies. Don't remember the last time I shared...a while I'm guessing. I had my surgery Nov 12. UPSC 3A.  The tumour had almost gone through the uterine wall. Turned out I had a small tumour on my ovary as well and positive washings. Luckily that meant I had access to the ovarian cancer drugs that otherwise i would have had to pay a lot for here in Australia.

My surgery left me with pretty bad nerve damage to my left leg meaning I've been dependant on pain meds ever since. Not sure what part neuropathy plays in that. The top of my thighs and groin have been numb ever since and I get lots of shooting pains all over the place. Anyhow, I've been NED for the past 3 years however a few months ago during a checkup the speculum thingy came out with blood on it. I was sent to a larger hospital for another investigation. Blood again. I may have a fistula. Evidently it can happen with the brachytherapy so it's been put in the "wait and see" department. I don't notice any discharge. Then, about 2 months ago I noticed some small lumps on my upper thigh. Then a few weeks later I noticed a hard lump in my inguinal lymph node. i have an ultrasound tomorrow. 

Generally speaking I rarely think about the cancer. Lately however lumps and bumps have made me more vigilant than normal. That said, if indeed this is a recurrence, I take heart from the stories of all you other brave women who have been through recurrences, more surgery and treatment and are still here. 

Down here in Australia I've never come across anyone else with this cancer although my oncologist says she has had other patients. So ladies thanks for sharing and for those newly diagnosed, the treatment is very doable and there is life afterwards even if with a slightly altered perspective.

I was diagnosed April, 2014 with stage 2 and did a total hysterectomy, three radiation sessions, and five chemo treatments. Six months later, there are nodules in my left lung. I'm again doing chemo and have recently been fitted with a PleurX system. I'm being treated at Sloan Kettering and am 66. Thank you for posting all your reassuring stories and especially those involving foods that help. 

Deidre297 said:

Brooklyn Member

I was diagnosed April, 2014 with stage 2 and did a total hysterectomy, three radiation sessions, and five chemo treatments. Six months later, there are nodules in my left lung. I'm again doing chemo and have recently been fitted with a PleurX system. I'm being treated at Sloan Kettering and am 66. Thank you for posting all your reassuring stories and especially those involving foods that help. 

Did you have clean CT scans of your lungs after surgery?  I also have Stage II UPSC and my doctor told me they will watch my lungs very carefully since that's often the first place it spreads.  I had my first chemo on October 27th and have had two CT scans of my lungs.

Take care,

Eldri

Deidre297 said:

Thank You

Thank you for your encouraging postings. The second treatment went well, but I had nausea for a few minutes for three days. I did have a CT Scan done before the Pleurx was put in and will have an Xray done because the fluid amounts have been less than 100cc. I am breathing normally and hope the fluid amounts continue to decrease. I'll continue to visit the site, as reading the various posts help me to better cope with the minor discomfort that I encounter. I also want to read some of the  dietary changes that other members have made and the recipes that they have shared. I find that sitting during treatments and staying awake help me get through them easily. Drinking plenty of fluids is easy, but getting it out afterward is always challenging. I've started to include celery at lunch, and this sometimes helps. I've always had a problem with retention unless I sit for long periods with my legs elevated. I'd like to find other foods that actually increase outflow whether or not I'm on my feet for extended periods. 

I was given a prescription for Emend which I had to take two days before each new round of chemo and continue it on the first day of chemo.  It was supposed to prevent nausea and vomiting, and that's exactly what it did.  I never had any problems.  It was a little scary one time when my pharmacy ran out of it, as I'd waited until the last moment to fill it, but another pharmacy across town had it.  Maybe you can ask your oncologist for a script.

libby.sparks said:

USPC

Hi DebraJo

Debra, Vidor, Texas, 57.6 years at dx.,UPSC 1a/b, grade c, treatment at M D Anderson in Houston, six rounds Taxol/Carboplatin, five rounds of internal radiation. As of May 14th, CA125 is 15.8, NED 4 years.   Just UPSC ladies for now.  

Libby Sparks

Age at Dx: 58 yrs

Stage IVB; No lymph node involvement. No myometrial involvement. But mets to bladder, bowel, omentum, diaphragms. All cancers were resected and left with "clear" margins. Interestingly, one of my maternal aunts died from Leiomyosarcoma; and three maternal great aunts died from uterine cancer. My mother had a hysterectomy at age 40. I wonder if she would have also been affected with endometrial cancer. 

Radical surgery/debulking Johns Hopkins Baltimore MD

Chemo in progress. Completed 4/6 cycles

CA125 prior to surgery/chemo 1218; CA125 was 9 on 12/7/15 (just prior to chemo cycle 4)

 

The recurrence risk with USPC is 50-80%. So, I'm thinking about what will be available if/when there is recurrence. I have been struck by a shift in cancer treatment to immune-mediated therapy (Herceptin, Opdivo, HIV and poliovirus to treat blood cancers).

I came across a research paper published by the GYN Onc team at Yale (Dr. Alessandro Santin) using a monoclonal antibody (MAB) that modifies EpCAM (epithelial cellular adhesion molecule). Apparently EpCAM activity unravels in several epithelial cancers. Dr. Santin's research used metastatic peritoneal tissues from women with USPC. Clinical trials have not been done humans yet. This MAB is called Solitomab. I found another study using IMMU-132 in humans, currently clinical research phase 1 and 2 (safety efficacy). 

I contacted Dr. Santin to offer my tissues for their studies. He offered me a second opinion consultation. I am seeing him on Feb 12. I'm excited to learn about Solitomab. I pray that we can all survive long enough to be offered an effective MAB. My understanding is that immunotherapies such as MAB therapy modifies the body's natural immune activity, that is they stimulate natural killer T cells activity that target cancer cells, but do not kill normal cells. Pretty encouraging.

Anyway i welcome the results of your survey about the women with USPC. We are rarer and have a much poorer prognosis than type I uterine cancer patients. We have to stick together. 

 

Take good care, Debra

Libby

So glad you joined the group. I hope your treatments continue to keep your CA125 numbers low! AND cancer free!

Please continue to share your information. That truly is exciting!  And, you are right... not enough of us out there yet to get the big research.

Love and Hugs,

Cindi

Deidre297 said:

Thank You

Thank you for your encouraging postings. The second treatment went well, but I had nausea for a few minutes for three days. I did have a CT Scan done before the Pleurx was put in and will have an Xray done because the fluid amounts have been less than 100cc. I am breathing normally and hope the fluid amounts continue to decrease. I'll continue to visit the site, as reading the various posts help me to better cope with the minor discomfort that I encounter. I also want to read some of the  dietary changes that other members have made and the recipes that they have shared. I find that sitting during treatments and staying awake help me get through them easily. Drinking plenty of fluids is easy, but getting it out afterward is always challenging. I've started to include celery at lunch, and this sometimes helps. I've always had a problem with retention unless I sit for long periods with my legs elevated. I'd like to find other foods that actually increase outflow whether or not I'm on my feet for extended periods. 

Hi Deirdre,

ive just read of your recurrence, and I wanted to tell you I'm sorry for what you're going through, and ask how you are doing. Are you still in treatment?

what kind of chemo did they give you this time? Carbotaxil again? 

i took cannabis (edibles & vaping) during my chemo, & never had nausea. Fortunate to be in California. Maybe you can get some where you are?

I hope the treatment has been effective. My heart goes out to you, and I wish you strength and healing.

❤️ 

Delia

trinoz said:

Stupid UPSC

Hi there ladies. Don't remember the last time I shared...a while I'm guessing. I had my surgery Nov 12. UPSC 3A.  The tumour had almost gone through the uterine wall. Turned out I had a small tumour on my ovary as well and positive washings. Luckily that meant I had access to the ovarian cancer drugs that otherwise i would have had to pay a lot for here in Australia.

My surgery left me with pretty bad nerve damage to my left leg meaning I've been dependant on pain meds ever since. Not sure what part neuropathy plays in that. The top of my thighs and groin have been numb ever since and I get lots of shooting pains all over the place. Anyhow, I've been NED for the past 3 years however a few months ago during a checkup the speculum thingy came out with blood on it. I was sent to a larger hospital for another investigation. Blood again. I may have a fistula. Evidently it can happen with the brachytherapy so it's been put in the "wait and see" department. I don't notice any discharge. Then, about 2 months ago I noticed some small lumps on my upper thigh. Then a few weeks later I noticed a hard lump in my inguinal lymph node. i have an ultrasound tomorrow. 

Generally speaking I rarely think about the cancer. Lately however lumps and bumps have made me more vigilant than normal. That said, if indeed this is a recurrence, I take heart from the stories of all you other brave women who have been through recurrences, more surgery and treatment and are still here. 

Down here in Australia I've never come across anyone else with this cancer although my oncologist says she has had other patients. So ladies thanks for sharing and for those newly diagnosed, the treatment is very doable and there is life afterwards even if with a slightly altered perspective.

hi Trinoz,

how are you doing? What were the results of your checkup of the lumps ?

i hope you're doing well!

love,

delia

deanna14 said:

Diagnosed September 2008 at

Diagnosed September 2008 at 39 years old with Stage IIIC mixed serous papillary and endometriod. 25 external pelvic rad, 3 brachy rad, 6 Taxol\Carbo chemo. I am still NED.

Hi Deanna,

i hope you're doing well. Still NED I hope?

i was diagnosed Jan 2015 Stage IIIB1, age 45. 

Full hyst, 6 rounds carbotaxol, 28 external pelvic rad. Am NED now. Unfortunately my surgeon failed to test my CA 125 before my hysterectomy, so I have nothing to compare my currents numbers to, but they're in normal range.

I'd love to hear how you're doing now!

best wishes, 

delia

artist49 said:

UPSC

I am  65 now and live in NJ.

I was diagnosed at Sloan Kettering with UPSC at age 61 in September. 2010. My stage was

4B, grade 3 and cancer was found all over pelvic area  and in all 40 lymph nodes tested. I

had a hysterectomy which was optimal and then entered a clinical trial at Sloan. 4 months

of carbo. ixabepilone  and avastin  and then continued with avastin for maintenance till

October 2013, I have been NED since Feb. 2011.   My ca125 was 53 at diagnosis and is

currently 1.

Now for the rest of the story -   In may 2012 I was tested and found to be BRCA 2 positive.

! was told  by  the genetics counselor at Sloan that being BRCA  positive can result in longer

remissions - esp. BRCA 2.

But, I'm not taking any chances with a horrific diagnosis like mine. I flew to Chicago  to learn about

diet from Dr. Block. I flew to Durango, Colorado  to become the patient of  the famed naturopath there.

She counsels me on the phone by monitoring my lab tests. She also OKs my diet.

I feel great but every CT scan brings on monumental anxiety.  I have a normal life back and

fear I will lose it again.

If anyone is interested, I will post my super anti cancer AM smoothie.

 

Good morning 

I was also diagnosed with USPC stage 4B (August 2015). Hysterectomy debulking and 6 cycles carbo/taxol. Initial CA125 1218. CA125 fell to 26 after the first chemo; CA125 prior to the 6th chemo cycle is 7. Like you, I am petrified about the results of my post chemo CT (this Wednesday morning).

I am trying to do everything in my power to reduce recurrence risk (not sure that's even possible). I've visiting "The Truth about Cancer", and am becoming obsessive about diet...clean, no sugar, avoiding chemicals for cleaning/dry cleaning. There aren't as many women with stage 4B to consult. 

I'd love to get to know you, and am happy to discuss my experience. 

Have a great day!

Libby

TeddyandBears_Mom said:

Hi Libby - Did you learn

Hi Libby - Did you learn anything new when you went to your consultation earlier this month?

Looking forward to hearing from you!

Love and Hugs,

Cindi

the visit at Yale was helpful. I learned about tumor genetic characterization, personalized circulating tumor DNA (ctDNA), whereby a blood test is developed for the individual person based on the DNA shed from the tumor. The rise in ctDNA precedes a rise in CA125 by 6 months; and CT evidence of tumor recurrence by 7 months. Furthermore, personalized treatment plan is constructed based on the individual patient's tumor genetics. The genetic survey looks at every protein encoding segment of 312 known oncogenes for genetic mutations. Each person's tumor has it's own unique "signature". My tumor genetic results are pending. I will go back for a visit with Dr Santin at 3 month intervals for now.  

I was disappointed that we did not discuss diet, fasting, exercise. As I understand from recent reading, maintaining low blood sugar "starves" the cancer and helps keep it in check. Sweating has also been reported as helpful; 30 minutes of moderate exercise daily should be good. I have read that fasting is. The fasting regimen could be flexible, for example 16-18 hours (no food from 6 PM to 8 or 10 AM) or restricting caloric intake every other day to 500 calories. 

There is so much new information to take in and process, eh? I suspect that most of us with USPC would grab onto any strategy that could avoid recurrence.