Roll Call For UPSC only

Port39 said:

Upsc stage 3c

I am currently UPSC stage 3c at the age of 39. I was diagnosed 02/27/2015 and had a robot hysterectomy. My ca125 started in the 200's and with the chemo (taxol/carbo) my numbers seem to drop but the second I miss a week of treatment the ca125 doubles. What is a good way to help my immune system not take such a dive? Sneaky cancer that UPSC is got past my dr during surgery and is in lymph nodes at my left hip and slows me down.

Do you take any vitamins?  Vitamin D is supposed to help.  I now take 2,000 mg. a day, but I've read somewhere that I should be taking 5,000 mg. a day.  Do you take any vitamin E?  I read a study a few months ago that mentioned the possibility that vitamin E can actually turn off our ability to fight cancer. More investigation into it was needed before any conclusions could be drawn. My father swore vitamin E saved his life after a heart attack at age 42, but he did have prostate cancer when he was in his 70's.  He had surgery for it and survived that but eventually died from kidney failure caused by congestive heart failure.  I stopped taking vitamin E after I read that study. 

Antioxidants are supposed to help the immune system.  Vitamin C is one of them, but it can be bad for you if you happen to have hemochromatosis.  In that case, vitamin C can make your body store ferritin (iron) that it shouldn't be storing.  I didn't know I had that disease unti after my surgery and chemo.  I was still short of breath three months later and too much iron in my body was causing it.  Too high a ferritin level can contribute to getting some cancers.  I don't know if uterine cancer is one of them or not.

Hi Debra,

Thanks for rounding all of us up! I got my pathology report today so now I can answer your call. :-)

Cindi, Inverness, FL 58 years at dx, UPSC and endometrial mixed. The "normal" kind was in the polyp that was removed during the D&C. Pathology post the hysterectomy showed serous carcinoma only. So, UPSC - stage 1A grade III. Treatment at Moffitt Cancer Center in Tampa, FL. 6 round of Taxol/Carbo and 3 rounds of brachytherapy. My cancer stayed contained in my uterus with only a 2mm out of 12 mm reach into the wall. They called this a superficial myometrial invasion. They plan to start the chemo next week. So three weeks post my hysterectomy.  My CA125 is probably not going to be a good marker for me. It was only 22 prior to surgery.

debrajo said:

UPSC

Exactly like me!  1a lll. my was confined to the uterus on a stalk(?)  Less than 5% invasion of the wall.  My ca125 was only 42 at dx.but has been a good marker as far as I know, but it is just a tool anyway.  Six rounds Taxol/Carbo, but 5 brachytherapy treatments.  If I can help, just let me know.  I was 57 1/2 at dx.  Worst part was the bone/muscle ache on day 2-3...and fear of the unknown!  Welcome to the "Unlucky"club!  Best, Debra   P.S. I am 4 1/2 years NED...going back to M.D. Anderson in Oct.-Nov. for fivr year check up.

Well I was dx at the end of February. I am 17 treatments into taxol/carbo and my ca125 is STILL a yo-yo. My dr added Nupagin to help my immune system last month. That helped some. Last chemo treatment  she added Avastin. Cross my fingers and toes, I get to find out monday if it helped.I had severe leg cramps for a week after.

Thankfully, I only have to fight the one cancer as the adinocarsanoma was removed with the hysterectomy and 4 lyphnodes.

I looked into the vitamin E research so far it's had mixed answers but I'm going to keep looking.

Should I avoid the radation at this point? I seem to be farther down the road with higher numbers than some of the posts I've read.

TeddyandBears_Mom said:

chemo schedule

Hey Deb, My surgeon said it would take about 4 months to get through the chemo. I go see my local oncologist on Tuesday to get the schedule set. How often did you have the treatments? Was it one in a week and then XX weeks with no chemo?  Also, I will have the radiation at Moffitt. I wanted that part to be cared for where my surgeon is. And, that is supposed to happen post the chemo.  Also, I am pushing to not have a port. I discussed this with my surgeon yesterday and he agreed that if my veins are good, I should be able to do it. My local Oncologist is pushing for it though. So, we shall see where I end up. Who knows?  My thought is getting the port in and out requires 2 surgeries. (Minor I know but still...) So that requires 2 IVs. Only 4 more without the port. And, I have good veins.  Sorry for the rambling here.

Also, I was very hesitant to do the brachytherapy. But, after discussing it with my surgeon, I feel the benefits outweigh the risks. He explained to me that the most likely recurrence of the cancer would be at the vaginal cuff and this will help ensure that doesn't happen. He also said that the radiation is targeted at the cuff, not the entire vagina. I had a different understanding so that made me feel better....  Since I want to live a long healthy life, I suppose using that dialator is a small price to pay. 

CONGRATS on 4 1/2 NED!!!!!  You give me lots of hope. :-)

Lots of love to all,

Cindi

 

 

 

I am getting chemo every week for 3 weeks then one week off. By the time the blood draws are done on tuesday to see if I can have treatment on wednesday and the chemo, I look like a pin cushion. Lab lady drawing blood said if vein colapses then I loose my arm. 

My port is easy as long as I remember to get the topical numbing cream on for the big iv needle you still feel on the skin port or not. But then there is no extra damage to my veins. My blood draws and chemo are all done from the port.

As for surgery it was the easiest out of the ones I've  had so far

Hope this helps you .

debrajo said:

chemo

Hey Cindi!  I had chemo 1 day for 6-8 hours, then three weeks off.  They gave me benadryl and steroids for 30 minutes before the chemo.  I was given zolfram and comprizine for nausa, but only took them the first two chemos since I never felt nauseated.  Had kind of metalic taste for several days which Popsycles took care of.  I didn't push the envelope any and stuck with a bland kind of diet the first couple of days after.  The bone/muscle ache took me by surprise(no one told me about that!), but once I knew it would probably happen each time, I started taking Motrin the morning of the second day after chemo.  I found, for me, Motrin worked best and my Dr. oked it.  Be prepaired, the bone pain will be like the worst flu/fever ache you've ever had, but only from the waist down(for me).  The steroids will keep working so by day 5-6 you will feel pretty good and energetic.  I need some of those steroids now...my house is a mess!

I did not have a port, not sure why since I am a hard stick, but I think it was because I had to have two open heart surgerys before I could even have the hystorectomy....lots of wires and cracked breast bone in there to get a port in.

You've read my post on brachytherapy and what it has done to me, but it is a very necesary evil and I would do it over again.  I think I had so much trouble later is that the stalk/tumor was on the very edge of the uterous, extending slightly into the internal cervical gland.  That required them to take a bit more of the vagina to make a cuff.  It all depends on your body as to whether the diailator will help.  Personaly, between the two heart surgeries, the hysterectomy, chemo and radiation, I just didn't have the energy, will, and too much going on to worry about sex or that darn dialitor!

It took me from Jan.8 to May 8th to finish all my treatments.  I had the sandwich treatment, radiation mixed between the chemo.  Hair will come out about day 10-13 and be gone by second treatment.  My advice is go be fitted for a wig before you start and no one will be the wiser, or like a lot of ladies here, go Commando!  Whatever suits you!  I wanted a port, but glad I didn't get one since I just had my THIRD open heart surgery March 31, 2015....what a sore mess that would have been!

 

I am the night owl here, so if you need anything let me know.  You will do fine...it's really the unknown that is the worse!  Best, Debra

Thanks for this post.  Though I do not have UPSC, I will also be getting the 6 rounds of carbo/taxol.  This is great information to have.  The chemo is very scary to me, and I want to be very strong mentally going in.

Port39 said:

teddy and bears why I got my port

I am getting chemo every week for 3 weeks then one week off. By the time the blood draws are done on tuesday to see if I can have treatment on wednesday and the chemo, I look like a pin cushion. Lab lady drawing blood said if vein colapses then I loose my arm. 

My port is easy as long as I remember to get the topical numbing cream on for the big iv needle you still feel on the skin port or not. But then there is no extra damage to my veins. My blood draws and chemo are all done from the port.

As for surgery it was the easiest out of the ones I've  had so far

Hope this helps you .

Thanks very much for the feedback. I'm on the fence. Just tired of being messed with.  I have had multiple procedures since my cancer diagnosis.  It just seems like too many  surgeries and stuff in the last 6 weeks. (D&C, Colonoscopy, Endoscopy and Pill Cam that they aren't sure passed and of course the hysto.... ugh!) The thought of yet another one just bugs me. I know I'm whining here. Sorry! Lots to consider over the next few days. Not sure about losing an arm. I'll ask my Oncologist about that before I make up my mind.  Thanks again.  Cindi

Hopeful162 said:

My two cents

I was very hesitant to get a port for my chemo infusions, but am very glad I did. The initial surgery is done under sedation and numbing medicine only and wasn't that bad, although I was quite sore for about three days, partly because they said to avoid ibpuprofen. Once they relented on that score, I felt much better! Also I was allergic to the clear bandage covering it.

Anyway, having a port will make the day of chemo much more pleasant as you will have use of your hands (to use the iPad, for instance). Insertion of the port needle was nearly painless with the cream. In fact, the one time they offered me a further numbing medicine by injection, it was worse than nothing! The real deciding factor for me, however, was the possibility of the chemo poisons leaking into the hands if the IV should slip and come out. If that happens it can kill the hand tissue, I was told. As I am an amateur cellist, the prospect of hurting my hands was not an option! All said and done, I would definitely get a port again.

I was sore for a couple of days after it was inserted but I like the freedom it gives me and the ease of it for infusions.  When I finished frontline chemo I wanted it taken out and my oncologist very gently said he recommends that women with UPSC keep it for a year but it was up to me.  That was in December of 2013.  Since then progression was discovered right away and I have had treatments of a variety all using my trusty port.  I look at it as a badge of honor.  Mine is child sized and although you can see it I use it to tell people about uterine cancer if asked.  

All an individual choice to be sure.  Wishing you well.  Sending hugs and prayers.  Anne

Editgrl said:

Going for the port

My doctor friend suggested it, and so did a good friend who has been battling bladder cancer for a year.  He did not get a port and wishes that he had.  My gyn/oncologist leaves it up to the patient, though he is in favor of it, also citing the possibility of tissue damage. I am hoping that mind is child-sized, too, Anne, because I am tiny.  I'm scheduled to have it inserted on Monday.  

If you have chemo questions fire away!  The main thing, which is cool - is that everything that happens is temporary!  I have a whole new appreciation for my ability to heal and recover that I never had.  Keeping you in my prayers.  Stay strong and you will thrive.

hugs, Anne

TeddyandBears_Mom said:

To Port or not to Port plus chemo schedule

Thanks to all of you for the feedback. It helps way more than I can explain.

I met with my Oncologist today. I have agreed to get a port. I'm over my temper tantrum on being messed with. This is in my best interest! I would say that at least 99 out of 100 cancer patients say GET A PORT!

Not sure when the port will go in. I meet with the surgeon this Friday. And, for now they have my first chemo scheduled for the 20th.

We will be doing chemo one time per week for 18 weeks. He said it is the same amount of time overall, but doing it this way enables him to minimize side effects and it gives my body a smaller amount to deal with.  I like the idea of less at a time. And still ending within the same window.  Also, he told me that the only thing that he can't help with should side effects hit is losing my hair.  I feel positive about this and will keep my eye on the prize of being NED and done with this in 6 months!  :-)

Chris - Since you are so tiny, I wonder if the approach may help you too?

That's it for now.  Love to all, Cindi

Without one, a woman faces destroyed veins in her arm. No way would I agree to that likely side effect. I found the 6 rounds of chemo- Taxol and Carboplatin- to be easily tolerated. My worst symptom was very severe back/hip pain that I believe was caused by the Taxol. The doctors acted like that was an unusual symptom but I've read enough posts here to know that severe joint pain-hip, knee, ankle and back- are common. I ended up getting two epidural shots in my back which finally gave me relief.  I usually developed symptoms from chemo 3 days after an infusion which included feeling fatigued and somewhat nauseated. I lost my hair within 3 to 4 days and about ten days after my first chemo. I went to the local ACS office and selected several wigs to wear and hats- all free for the taking. The American Cancer Society was wonderful!!  I met a kind and loving woman there who insisted on helping me even though it was past 5:00 pm on a Friday.  Her name is Terry and I consider her one of my heroes in my personal cancer journey. When I said that it was late and it was time to close the office- she would not comply. I explained that I could come back on Monday, but she wouldn't hear of it!

 The very worst part of the chemo Tx for me was the loss of my eyebrows and eye lashes after my 5th chemo. I looked and felt like a freak. My complexion looked pasty, too. But in spite of the side effects I would do it all over again if it would buy me more time. I was offerred brachytherapy, although two doctors didn't think I really needed it. Radiation Tx comes with two many serious and lasting side effects. I may agree to radiation if there is cancer present to radiate and not before.

Warm Wishes,

Cathy

TeddyandBears_Mom said:

To Port or not to Port plus chemo schedule

Thanks to all of you for the feedback. It helps way more than I can explain.

I met with my Oncologist today. I have agreed to get a port. I'm over my temper tantrum on being messed with. This is in my best interest! I would say that at least 99 out of 100 cancer patients say GET A PORT!

Not sure when the port will go in. I meet with the surgeon this Friday. And, for now they have my first chemo scheduled for the 20th.

We will be doing chemo one time per week for 18 weeks. He said it is the same amount of time overall, but doing it this way enables him to minimize side effects and it gives my body a smaller amount to deal with.  I like the idea of less at a time. And still ending within the same window.  Also, he told me that the only thing that he can't help with should side effects hit is losing my hair.  I feel positive about this and will keep my eye on the prize of being NED and done with this in 6 months!  :-)

Chris - Since you are so tiny, I wonder if the approach may help you too?

That's it for now.  Love to all, Cindi

I am so glad I got a port.  In fact I am on my second one.  I stupidly had the 1st removed after my 1st go round of treatment.  i thought i was through with this stuff.  7 months later i had it replaced.  I was awake for both and felt nothing.  Healed very quickly with no real pain.  Interesting to take a shower with plastic wrap over my shouder, for a few days.  I don't notice it at all, unless someone hugs me real tight.  It is nice to have both arms free during chemo, also easier going to the bathroom.  I also think there is less comotion getting hucked up if they just have to access a port, instead of finding a vein.  Hugs and prayers, Lou Ann