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Luckyluke
Posts: 55
Joined: Feb 2019

Hello to all you brave women. I was diagnosed in December 2019 with endometrial cancer . Had my surgery on January 16th had a robotic complete hysterectomy. Cancer confined to uterus and slightly into cervix. All lympnodes tested were negative. Pelvic wash negative. Stage 2 Serous carcinomais the reason gynecologist/oncologist recommending chemo and radiation. I am 69 years old and no other health issues until now. I had my port put in today so I'msure chemo will start soon 3 chemo rradiation and then 3 rounds of chemo. I have to admit worried about the side effects.  But I have been reading alot on this site and know serous is serious.  My faith is strong and my GOD is in control. You ladies have been so informative and I'm thankful I found you all. God bless each and every one

Luckyluke
Posts: 55
Joined: Feb 2019

Anyone else with serous stage 2 that can share  experience

janaes
Posts: 751
Joined: May 2016

Luckyluke

Welcome to our group. You will find a wonderful group of ladies here that have good information. I found this group to be supportive and caring.

I finished up treatment just over two years ago. I was diagnosed with MMMt uterine cancer stage 2 grade 3. So my cancer was confined to the uterus like yours was. I had 6 rounds of chemo nd 3 bracytherapy appointments. Im sure others will come and share there experence as well.

May the treatments be good to you as you go forward in your journey. Some have found treatment to be very doable. Mine werent too bad on me. I made it through them and thats good. 

Know that you can come here for support through your treatment. We are here for you.

Janae

Luckyluke
Posts: 55
Joined: Feb 2019

Thank  you  Jane a for all the information. I haven't  met  with  the  radiologist yet chemo Dr  said probably  after my first chemo I will  talk to him and see what his plan is going to be. My worry about the external  radiation  is damage to colon and or bladder. And shrinkage  from the beach lol. I guess  we do what needs to be done to beat this beast. Have a blessed  day  praying  for  all

zsazsa1
Posts: 311
Joined: Oct 2018

You've come to the right place.  I learned a lot from the very helpful women on this board.  It sounds as if your oncologist is recommending the sandwich protocol.  I would not have been able to have that, because my vaginal cuff didn't heal quickly, due to the chemo, and I'm 12 yrs younger than you, so don't be surprised if they wind up having to delay the radiation until you heal. Here are all the things I've found out through this website and my research, that I wish someone had told me right at the start.

I was TERRIFIED of chemo.  Turns out, it's just not that bad.  Unpleasant, but definitely tolerable.  You can get through this!

I would recommend that you keep your hands and feet in ice cold water or use some other sort of method to chill your hands and feet during the Taxol infusion, to try to prevent severe neuropathy.  I did it, using a heating pad on my torso to stay comfortable.  I have developed mild neuropathy after the 5th round, but some women have developed it earlier than that, and I think that the chilling probably did help.  My husband and I brought a big bag of ice (from the supermarket), and I used plastic shoe boxes and quart sized plastic soup containers.  At first, I put my hands and feet in them filled with cold tap water, then my husband adds ice to the water as tolerated.  I keep them in there until all the infusions are over. I wiggle my hands and feet to try to keep them in contact with cold water.  My husband draws off the warmed water and replaces it with ice throughout the treatment.  This upcoming last round, we're going to place the plastic poxes on top of cold freezer packs, since when I'd fall asleep the balls of my feet would rest against the wall of the container on the floor, and get warmer. I have no neuropathy in my hands, and only a little numbness in the balls of my feet - no pain.

Ask your physician about having your tumor tested for her2neu status, to see if you could be eligible for Herceptin.  My surgeon and oncologist recommended against this for me, but I knew that it had been recently shown that Herceptin is helpful if your tumor is positive for her2neu, so I went for a second opinion, had the test (which showed I WOULD benefit from Herceptin), and was able to have it added.  I had isolated tumor cells in one sentinel node, which my second opinion oncologist was able to use to restage my tumor as IIIC1, to make me eligible for Herceptin.  You could have a battle on your hands getting your insurance to pay for Herceptin even if your tumor is her2neu positive, because you're a stage II.

Wait until you're bald to buy a wig (usually after 2nd treatment).  It's much easier to try them on and find correct fit once you're bald.

Insist that your oncologist give you a prescription for ondansetron to have on hand before the first treatment.  It is an amazingly effective anti-emetic.  My oncologist swore I would not need it - but I really did.  They say that if you had bad pregnancy nausea, you'll have bad chemo nausea.  Sure was true for me.

I asked for the oncologist to reduce the steroid dose for pretreatment after the first two rounds of chemo, because I was so wired I'd be up all night after chemo, and to try to reduce my steroid exposure (fear of cataracts).  I began at 20, went down to 15, then 10, and for this last round will have 5.

My first round was by far the worst.  I got so nauseated that I got dehydrated, and the chemo burned my kidneys and bladder.  Subsequent rounds have been much easier.  One thing I learned is to drink a TON of water, starting from right before the infusion, and then as long as I could, usually for about 48 hrs, which was when the nausea starts to hit.  I think that the hydration washed the chemo out through my urine more quickly if I drank a ton.

Find out whether they plan vaginal brachytherapy only, or want to do pelvic external beam radiation.

Serous is aggressive, but the fact that you had no lymph node involvement is very good. 

Plan on asking for help for the week after chemo.  You probably won't want to cook or do much for a week after chemo (other than the first day afterwards - the effects don't really strike until 24-36 hrs later.  Aside from my wonderful husband, I have friends who cook for me and my family the first week after chemo.

Good luck with the chemo.  Feel free to ask any questions.  Someone on this forum will have answers, or have been through whatever is puzzling you.

 

Luckyluke
Posts: 55
Joined: Feb 2019

ZsaZsa1 thank  you for all the great information. I  definitely  will  look into icing my hands and feet.I know every person is different but this sure helps to know what to expect I'm  figuring the sandwich protocol  will take around 6 months hopefully  not any longer to try and heal. Lord bless 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2562
Joined: Mar 2013

I differ in zsazsa's opinion about the wig.  If you want a wig, I would suggest you find a shop that really knows wigs, they will want to see what your current hair looks like and will know how to properly fit your head, even with hair.  Plus, when you lose your hair, or shave it off, you can start wearing your wig.  I was 49 when diagnosed (dx) and continued to work - still do - throughout.  

I had the sandwich treatment you are talking about, and the radiation was both external (IMRT) and internal (brachytherapy).  When you think about the amount of red and white blood cells that are generated by your pelvic bones, for me, it was the radiation that almost delayed my 5th round of chemo, and did delay round 6 by one week.  

As zsazsa said, thinking about chemo is scary, but as you get in to it you will find it is "doable".  Please know that chemo, for a lot of us, is constipating, so my tip would be "Miralax is a miracle".  You need to figure out the schedule to help you, but when I checked with my chemo nurse, since I was taking more than what the label said, she said it was ok.  I think it is always good to check with your nurses - they are godsends.  

I think most women here have been properly been prescribed steroids, and I mean by that that they were 'stepped down' after starting.  We had one lady who was not and had some serious issues.  Steroids are normal, but cannot just be stopped, so check the schedule you recieve.  

Soup52's picture
Soup52
Posts: 900
Joined: Jan 2016

I agree with no time . I went to a spa that specialized in wigs before chemo. They ordered several wigs in my color and-close to my style so I could try them on after my first chemo when my hair started falling out. As part of the service they buzzed my hair off and I selected the wig and they cut it a bit for me. I just had to pay one fee for thereturned ones only $10. Mine was synthetic but looked real. It was much better than my real hair. They also washed my wig when I needed it. No charge. I just wore it when I went out. It was winter so it wasn’t too hot like some people complain about.

Luckyluke
Posts: 55
Joined: Feb 2019

Soup52 thank you for the  information the wig place I'm  going to go to will trim it and thin it if necessary.  My natural hair has been  thinning on its own last few years, must be from age as I only take cholesterol  meds and don't  think they will  thin your hair. I just  want a wig that looks close to my own  hair. I wear my hair pulled  back and up for church so it doesn't  get in my way. Have to use hair spray as it is thin and fly away. Have a great day

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

I think I was that lady. After my first infusion and "falling off the steroid cliff" afteward, getting so very sick I thought I might be dying (not to mention almost splitting my head open as I fainted onto the bathroom tiles), I demanded that my steroid dosage be stepped down the next time. I had asked for that for the first round, but the onc said I wouldn't need it. Right. I later switched oncs to one in a different city, for this and many other reasons. The stepped down dosage is crucial, I think!

zsazsa1
Posts: 311
Joined: Oct 2018

I can only say what worked for me.  I went to a wonderful shop with an enormous selection, and excellent service, to be fitted before I lost my hair.  It was very difficult.  We tried tight caps underneath the wigs. We tried bunching up my hair to get it out of the way. The wig I liked the best was too small for me, and we thought I would have to get one made for an extra large head.  But the selection of those was much smaller.  I gave up, waited until I was bald, went back.  Totally different experience.  I could easily whip on wig after wig, rapidly tried on 20 different wigs.   Lo and behold, the one I had liked best at the first visit, (in fact, the only one I liked at all), but had thought was too small for me, now fit perfectly.  The large ones were now obviously too large.  For this reason, I say that for me, it was better to wait until I lost my hair to choose my wig.  One can always show the fitter your photographs from before hair loss.

As for the steroids, I had NO IDEA that it was common to have them stepped down after starting treatment!  My oncologist never offered that!  I myself asked for it after the second round, because I know that they cause cataracts, and because I was so hopped up on them.  I asked for, and she agreed, to cut it back from 20 mg to 15 mg, and then to 10 mg.  Now, for the last round, I'm asking her to cut it to 5 mg.  It makes me furious to know that it is apparently common to step down the steroids after it's obvious that one doesn't have an allergic reaction to Taxol.  If I hadn't asked, I would have gotten the entire 20 mg of Decadron IV (which is equivalent to 300 mg of prednisone IV) every time!

Just yesterday I had a second meeting with the radiation oncologist, pretreatment, to ask about external beam, because of increased efficacy in preventing pelvic relapse.  Because I had isolated tumor cells in one of the two sentinel nodes they sampled, of course I am worried about recurrence (UPSC and clear cell).  I asked him about doing both brachy AND external beam, with the external beam adjusted to avoid overdosing the area that had had brachy.  He said it would be too difficult to patch together the external beam to avoid the area that had been exposed to brachy.  Yet from what I read of your treatment, you had both, and I suspect that was exactly what they must have done.  Could you elaborate on the details of your radiation treatment?  Maybe I should get an opinion from a different institution here in town - I'm lucky in that I have several options here in town, and can also go to another University Research Center about an hour away.

Lucky, this is an example of why this forum has been so beneficial to me.  I've gotten information here that I didn't get elsewhere, from women who have been through it.  I'm glad you found us.

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

I second most of what everyone has suggested. I had no lymph node involvement, but did have LVSI.  I had a radical hysterectomy, sandwich chemo and brachytherapy. Three chemo, three brachytherapy, one chemo. Ice your hands and feet. Do ask for the anti-nausea medications because if you really need them you will have it on hand and they are not expensive. I was given two types, prochlorperazine maleate 10 mg, and the ondasetron hcl 8mg, and told to take the 1st one and then if still nauseous, take the ondasetron. I only took the prochlorperzine as it did the job. I only threw up once and that was because I did not take the medicine on time. But both were optional. Chemo was doable. Not as bad as I thought. Brachytherapy was doable, and I had minimal diarrhea after. I had some neuropathy in my fingers and feet, both which have slowly subsided, not sure yet if it will get worse in the future. All in all I had a very easy time compared to many. I chose not to wear a wig so I opted for many hats. Welcome to our board and hope we can help you through this. 

 

xxoo

Denise 

Luckyluke
Posts: 55
Joined: Feb 2019

Thank you for the information I already have my nausea  meds looks like the same one you had. Mine says 1 every 6 hours as needed for nausea. Wouldn't  you want to take them before you get nauseous and not wait until your about to throw up? Or do they work pretty fast? Well I am thankful  for  all  the  good information  I'm  getting, taking some of the anxiety  away. 

 

 

BluebirdOne's picture
BluebirdOne
Posts: 194
Joined: Jul 2018

I forgot to add that when discharged they gave me the instruction to take them before I felt nauseous, which I did. The time when I threw up, I slept through my pill time so it was a rude awakening to have to throw up as I was getting out of bed. The one did work very well for me. I only had to take them for a few days after each chemo but I was very glad to have them. Good luck to you. 

 

zsazsa1
Posts: 311
Joined: Oct 2018

The prochlorperazine did nothing for me whatsoever.  The ondansetron worked beautifully, and very quickly.  You put the orally dissolving tablet under your tongue, and just let it melt and swallow your saliva as it melts.  It doesn't taste bad.  It worked within 15 minutes - I went from being at that salivating about to vomit state to feeling no nausea at all in 15 minutes, and an 8 mg lasted about 24 hrs.  I only needed it once or twice per cycle, usually about 36 -48 hrs after chemo.  I would recommend having both on hand.  My oncologist refused to prescribe it for me beforehand, saying I would not need it.  She was wrong, and my poor husband had to drive in the middle of the night to get it from an all night pharmacy, after I contacted the doctor on call.

Luckyluke
Posts: 55
Joined: Feb 2019

Thank  you  for that bit of information did you take the first meds before  nausea  set in or when  you got nauseous 

pinky104
Posts: 574
Joined: Feb 2013

I just want to say to not have complete faith in the fact that your lymph nodes were normal.  Mine were back in 2010, but my UPSC came back 7 years later.  The second time, I had two positive lymph nodes, and the cancer is back again now.  Still, I had a very long run from 2010 - 2017 of thinking I was okay, which was nice.

Luckyluke
Posts: 55
Joined: Feb 2019

Hi pinky you have had a tough road I have read a lot of your posts. Yes from what I'm  reading this serous is tricky. Yes Dr checked 47 lympnodes  and is a good number to be clear but you don't  know about the ones  that haven't  been  checked. So even though your clear and get chemo and radiation  and scans  are clear it can still recur. It's  just a hope and wait situation 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Hi Lucky, 

Yes welcome to this board. The ladies on here have lots of knowledge and experience. I know none of us want to be here but sometimes life takes a different turn than we expect. So my advice to you as you start this journey. Live in the moment and try not to think too far ahead. Deal with the facts you know today and again try not to be anxious about the future. It will come no matter how much we worry. 

Chemo is definitely doable! The first one will help you to understand the process at your facility. Talk to the infusion RN's and ask questions of them. They have a wealth of knowledge too. Everyone's experience will be a little bit different depending on how your body deals with the chemo. But as I have said before rememember the chemo is your friend helping to kill any cancer cells that may have strayed. 

Bring some things to keep you busy because the sessions can be over a few hours depending on the drugs they infuse. Typically they will give some premedication to help prevent any reactions from the chemo and nausea. Thankfully we have wonderful new drugs now to prevent nausea. The premedication will make you sleepy so I found putting in my ear buds and listening to Spotify was my go to during my sessions. I usually had my own snack food and water bottle for them to refill. I would bring a book and some adult coloring books with me but found listening to music was my thing. 

As some of the others have discussed...constipation can be a problem. I know for me it was and the first cycle I wasn't ready for it but after that I had my routine down and was able to keep things moving. LOL TMI I know!!! 

When is your first session? All the best and try not to worry. I will say a prayer for you and hope everything goes well for you. xoxo

Luckyluke
Posts: 55
Joined: Feb 2019

Lulu thank you for the advice and information  I had my port put in 6 days ago so I imagine I will be hearing from the chemo Dr soon.did you have any problems  with neuropathy? Thank you for the prayer 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Thankfully I didn't have any symptoms until the sixth cycle and even then it was only in my toes and the ball of my foot. It has improved ( I am now 6 months post last cycle) but I still have some numbness in my toes. Sort of feels like my toes are cold. I don't have pain and never did just some numbness that I can live with. 

All the best ...hopefully they will reach out to you soon. I would even call your doc to find out where there are with your chemo schedule just to help move things along.  They can use your port now. Infact I had my port put in on a Wednesday and Friday they did my first cycle. xo

zsazsa1
Posts: 311
Joined: Oct 2018

Lucky, if your tumor has not been tested for her2neu receptor status, you should have this done.   Because your tumor extended slightly into the cervix, it is a stage III.  If your tumor tests positive for her2neu, you are eligible for the addition of herceptin (trastozumab) to the chemo, and it is shown to extend the period of remission.  Herceptin is mild, doesn't have significant side effects for many women.  I had it added starting with the second round of chemo, and my worst round was the first, so I doubt it's causing side effects for me.  Look at this, scroll down to the paragraph about trastazumab.

https://www.onclive.com/web-exclusives/asco-names-progress-in-treating-rare-cancers-as-advance-of-the-year

Even though I work in healthcare, I was SO nervous before starting chemo.  I said to my husband that I felt like a dog being taken in to the vet, trembling with fear.  I had a prep visit to the chemo center where a nurse showed me around, told me and showed me everything that would be done.  That was very helpful - it felt like deconditioning.  Made my first visit a few days later much easier.

For some reason, they had trouble accessing my port if I were sitting up, but when I was lying down, it was easy, so now they do it with me lying down each time.  I have all my blood draws done peripherally, since I want to minimize the number of times my port is accessed, to reduce the chance of infection via the port, that would necessitate removal of the port.

The only thing that I could do while on the infusions, because I had my hands and feet in ice water, was watch tv shows or movies on a laptop.  I fall asleep every time, because of the benadryl and other premeds they give.  I needed someone there to scoop off warm water and add more ice during the chemo.

If you do not have an allergic reaction to the Taxol, talk with your oncologist about appropriate reduction of the dose of Decadron with subsequent infusions.  I can tell that the Decadron has definitely made my eyes worse, probably because it makes cataracts worse.

Good luck!

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