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My treatment plan...

frodolass
Posts: 29
Joined: Sep 2013

Okay, met with the doctor today. He told me that I was the hot topic at their latest meeting. This is what they've got planned for me.

6 weeks of radiation therapy daily along with weekly chemo with the drug Cisplatin. Then, a 3-4 week break after which we would begin 4 rounds (every three weeks) with Taxol/Carbo (maybe Carboplatin?)...he abbreviated here, so not sure.

I really wasn't wanting to have chemo and radiation together, but they seem to think that's what I need. I'm willing to do what it takes.

I finally was told my stage: IIb (UPSC).

Any input would be helpful!

Thanks!

Donna

 

cheerful
Posts: 122
Joined: Apr 2011

Hi Donna:

 

    Your treatment plan sounds really good. Your oncologist wants to attack the cancer hard and aggressively which is excellent.  I was diagnosed with Stage 1 of UPSC (a 5 centimeter polyp) in February of 2011 and had 6 rounds of carboplatin/taxol and also 3 rounds of brachytherapy.  My oncologist wanted to attack my cancer aggressively also. With the chemo, I made out well with it and had constipation, some loss of appetite I could only have 2 meals a day rather than 3 for a few days, and I also had a Neulasta shot and blood transfusion after my 5th chemo treatment. So far, I remain without evidence of disease after 2 1/2 years of diagnosis for which I am Very grateful and thankful and I hope to remain without evidence of disease for the future.  I have changed my eating habits for the better and am now eating a lot healthier

    I live in the Northeast section of the country outside of Philadelphia, PA.

     My oncologist is nationally known and knows a lot about UPSC and is very knowledgeable and has over 35 years of experience in his field.

     One of the hardest things was going through your hair loss, but I immediately went out and bought a wig about a month after I met with my oncologist so I had the wig before the chemo started.  All my hair started falling out the end of April of 2011 and I had my first chemo treatment on April 14th.

    I have a friend that also had Stage 2 B of UPSC and she was diagnosed the end of 2007 and she has now passed her 5 year mark and has remained with NO evidence of disease so she is pretty much cancer free.

   Good luck with your chemo treatments and also your radiation treatments.  

  Please keep us ladies posted here and let us know how you are doing going through your treatments.

Cheerful

a/k/a Jane

 

 

 

 

 

 

frodolass
Posts: 29
Joined: Sep 2013

Got my first CA-125 results: 10.8. That's pretty good, isn't it? What is CA-125. I've read you all talking about it in other threads.

Donna

 

cheerful
Posts: 122
Joined: Apr 2011

Hi Donna:

 

  The CA 125 is a blood test - any results below the number 35 is considered Normal.  Your number 10.8 is very good.

 

Cheerful

a/k/a Jane

 

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

I agree that sounds like a good number.  What was shared with me is that for some this is a good cancer marker for others not.  For example when they were trying to figure out my cancer situation last November they did a CA-125 and it was like 5.  It has stayed there other than one time after chemo.  they concluded that since it was normal when I was diagnosed with Cancer they really can't rely on it for me like they might with others.  Good to have this conversation with your oncologist to see how he views this marker for you

 

Ann55
Posts: 43
Joined: Jun 2013

My understanding also is that CA-125 is not reliable for everyone.I am UPSC stage 3C and even prior to surgery my CA-125 has always been normal. Some of us just have to rely on pathology and scans.

frodolass
Posts: 29
Joined: Sep 2013

Yep, I had read that. I don't know if they took a level before my surgery or not, but it would have been interesting to be able to compare. At any rate, I'm glad it's low. Thanks!

sunflash's picture
sunflash
Posts: 153
Joined: Aug 2011

It's not a reliable indicator for me either. It was never taken before surgery since cancer wasn't expected, and after surgery it was 5.

I also wish it had been taken before surgery just for comparison sake.

ConnieSW's picture
ConnieSW
Posts: 584
Joined: Jun 2012

Are there anytheories  why it's an indicator for some and not others?  Mine was 8 before surgery but my oncologist still has them drawn.  Guess that means it could become useful for some reason.

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

my read on this is no one really knows the answer. If they didn't do it and it could have been useful someone would hold them to it.  So since it is protocol everyone gets the test.  Being a marker it just gives information to allow you to reserach further. Hopefully there are other types of markers in the mix such as cat scans,  MRI's,  pap smears etc... 

frodolass
Posts: 29
Joined: Sep 2013

Thank you guys for your comments and for the whole forum in general. I have found a wealth of information and some very kind folks.

I'm having my port inserted tomorrow. Can anyone tell me what to expect? Will I be put to sleep for the procedure? Will it be under my skin? Will stuff be "hanging" out, lol?

Thanks!

Donna

 

Kaleena's picture
Kaleena
Posts: 1124
Joined: Nov 2009

Hi Donna:

They will place a lot of covers around your head and chest.  WhenI got mine way back in, I was up for part of it and they put me out.  But I heard that they don't do that anymore.  When I got mine out, I was totally awake.   It will be placed under your skin.   Mine ended up down in my boob so it really didn't show much.  It can be tender though if you bump it.  

When they access it, it depends on who your nurse is.   Just like getting stick when giving blood, etc.    Sometimes I don't even feel it.   The first time they access my port, I did get a brief feeling of dizzyness but that was all.

Let us know how it goes!   You will do fine!

Kathy

ConnieSW's picture
ConnieSW
Posts: 584
Joined: Jun 2012

I had light sedation so wasn't aware of anything when they inserted it.  The only discomfort afterwards was from the weight of my breast tugging on the incision.  The nurse helped me into my bra immediately afterwards and that helped a lot.  I also propped it by placing  my lower arm across my chest to help support my breast.  I seem to recall that only lasted a couple days or so.  I was also careful around my grandchildren afterwards so itwouldn't get bumped.  I did get an infection in the incision afterwards despite my being a nurse and being very careful to keep it clean.  I reported it immediately and was put on an antibiotic.  My port was wonderful and made everything so much easier.  Just be aware of complications to watch for, as you should with anything else in your treatment

frodolass
Posts: 29
Joined: Sep 2013

Hi guys! Thanks so much for the helpful information. It helped a lot!

 

They didn't put me to sleep, but I got sedation through an IV. They hit me twice, but it didn't really make me unaware of what was going on. It did relax me a bit because my blood pressure went down...it had been high because of anxiety earlier. It's really sore this evening. Can't really turn my head without it pulling and hurting, but I'm sure it will pass quickly.

 

I begin chemo on Monday. It will be once a week for six weeks. Radiation begins on Wednesday and it will be every day for 5-6 weeks.

 

Insurance refused to cover the PET scan the chemo doctor (not sure what his offical title is) ordered because it is considered "experimental." Argh. My insurance company is driving me nuts!

 

Thanks again for the help, support, and information.

Ro10's picture
Ro10
Posts: 1421
Joined: Jan 2009

Glad to hear you got your port.  Hope the soreness goes away soon.  the port will make chemo and blood draws so much easier.  I hope you tolerate the chemo well.  I know my first chemo was no nearly as bad as I had anticipated.  Make sure you drink plenty of fluids and do what you can to keep from getting constipated.  Rest when you need to, and accept help from others when offered.   Hope you have a good weekend.  In peace and caring.

Kaleena's picture
Kaleena
Posts: 1124
Joined: Nov 2009

Hi Donna:

Hoping your first chemo went well.   You may find that you have a lot of energy today especially if they gave you steroids beforehand either the night before or right before infusion.    Just be aware that either tomorrow or the next day you may feel a little crummy or totally exhausted.   Of course, since you are getting chemo once a week, it may effect you differently.  They are always trying ways to make it more tolerable.

As with the insurance company, I was refused a PET scan ordered by my Gyn/Onc because they said it wasn't "medically necessary".   Can you believe that?    aah, let's see.  I have cancer.  Isn't that medically necessary on its own?   I argued long and hard and still lostEmbarassed.   It is frustrating.  I hope you have better results with your company!

Again, thinking of you!

Kathy

cheerful
Posts: 122
Joined: Apr 2011

Hi Donna:

 

  I hope you are making out okay today with your first chemo treatment.  Just be sure to get plenty of rest after today and also tomorrow and drink plenty of fluids.  Your treatments are every week whereas mine were every 3 weeks, but you will be finished with them a lot quicker as well as with the radiation.  So good luck with everything. 

  Also, the medication that the chemo nurses give you before you start your chemo will help you as well.

  Anyway, all the best going through your treatments.

Cheerful

a/k/a Jane

  

 

frodolass
Posts: 29
Joined: Sep 2013

Well, I completed my first chemo treatment today. It was a bit of a disppointment.

They took me back to do vitals and gave me three "tubes" for blood. I was to take the tubes to the chemo room and wait to have my blood drawn. I got directions to the chemo room. I walked in and was surprised to see this relatively small room filled with a couple dozen people sitting in chairs hooked up to IVs. There is no privacy. You're not allowed to bring a family member with you because of "flu" concerns. My opinion is they don't allow it because there is literally no room for anyone else. The chairs are jammed together. I now know everything there is to know about my neighbors, and they about me. They kept me waiting two hours to just draw my blood. When we finally got started on the four hour treatment, I had to wait long periods waiting for the nurse to come change the drugs to the next one.

Maybe this is the way it is everywhere? I'm unhappy with the situation, but really have no choice in the matter, so I'll have to grin and bear it. I'm sure that the treatment itself is effective, it's just not very comfortable or supportive.

Anyway, the insurance finally agreed to pay most of the PET scan (yay!), so I go for that tomorrow. Hopefully, I won't get sick during it, lol.

Thank you again for your concern and support. It means a lot to me and I appreciate your knowledge.

Donna

Ro10's picture
Ro10
Posts: 1421
Joined: Jan 2009

There is always a waiting period for them to mix the chemo.  They have to make sure your blood count is okay.  They do not mix the chemo until you are at the chemo area.  Where I go in Florida they do vitals and then you wait in the waiting room until the chemo is mixed.  In Illnois Iwait in the chemo chair.   I am sorry you can not have anyone with you while you get chemo.  It sure passes the time.  My chemo days are 2 days in a row and maybe 8 -100 hours long.  I have to have both chemo drugs slowly.  The premeds take over a hour.  My husband has always gone with me.  I appreciate all his support.

is there another cancer center close that you could go to.  Although if you are getting radiation at the same time, it would be inconvenient for you.  

Did your port work good for you?  I hope you PET scan goes well tomorrow.  Remember to keep drinking fluids.  In peace and caring.

frodolass
Posts: 29
Joined: Sep 2013

Thanks so much for your post! I'm sorry to be so whiny. I don't know what's wrong with me. Usually I can just go with the flow. After I thought about it, I really had an enjoyable (or not miserable anyway, lol) day. It wasn't as bad as my first knee-jerk reaction. I'm going to go with a positive attitude next week. I also bought a sleep mask and ear plugs Wink

The PET scan went very well...except for the coughing fit I had in the middle. They said it was okay, though. I should have the results tomorrow at my first radiation treatment appointment. Hoping for a clear scan. One positive thing is that insurance covered the scan 100%! My radiologist oncologist is a tough cookie and she went after the insurance company to get them to agree to pay for it.

I'm not having any negative reactions to the chemo at this point except elevated blood glucose levels. I guess the nausea will show up in the next couple of days, if I have any?

Thanks again. You guys are such a comfort.

Donna

 

 

 

Ro10's picture
Ro10
Posts: 1421
Joined: Jan 2009

Feel free to express any of your feelings.  The steroids can make you more emotional.  Maybe you won't get nausea since you are getting weekly chemo which is a smaller dose.  I hope the nausea stays away for you.  

is tomorrow your first radiation treatment, or your appointment to get fitted for a " mold".  One of the recommendations I was given was to have a full bladder before each radiation treatment.  This keeps the colon away from the area getting radiation.  By doing this I did not have the colon problems.....diarrhea that others have experienced.

glad the PET scan went well.  Hope you get good results tomorrow.  Did the soreness go away from your port?

The steroids will cause an elevation in your blood sugar.  Plus you may be getting some of yout drugs mixed in glucose.

i always took my I-pod and listened to music while I was getting my chemo.  Here's hoping that tomorrow goes well.  In peace and caring.

frodolass
Posts: 29
Joined: Sep 2013

I didn't even think of the music on my iPhone...duh! LOL. I'll make sure to have my earbuds next time.

 

I meant to mention that I'm in FL too. I'm going through North Florida Regional Medical Center in Gainesville. I could go to Shands, but that's a big mess.

 

Thanks for your help!

 

Donna

cheerful
Posts: 122
Joined: Apr 2011

Hi Donna:

   I am sorry to hear that you were disappointed through your first chemo treatment.  I know the pre-medication does take about an hour before the chemo nurses administer the first of the chemo drugs. I know I was at the chemo room from 9:30 a.m. to 4:00 p.m. so it was just about the entire day and sometimes I did not leave until 4:45 or so. One time I remember getting to the chemo room around 10:30, but that was because my oncologist was backed up with his patients.  So it really is a long day.

  The chemo room was very pleasant and very comfortable. If you got there early enough I took the end chair near the window so I could look out. The nurses were great and very comforting and accommodating. Your right, there is No privacy in the chemo room as there are other patients around you, but they do have a curtain that they can pull around you should the nurses need to do something at least at the cancer center where I had my treatments.  I did stop in to see the chemo nurses even after my chemo treatments were over with as they had asked me to stop by to see how I was doing. I had my chemo treatments done in the suburbs of Delaware County, PA about 10 to 15 minutes from where I live and my oncologist is the floor below from where I had the chemo treatments so it was very, very convenient for me.

  I also had a Neulasta shot and blood transfusion after my 5th treatment as my platelets were very, very low and it helped me tremedously after I had the shot ad the transfusion as I started to feel much stronger.

  I always had someone with me during all my chemo treatments - my close girlfriend was there for my 1st treatment and my Mom came for my other 5 treatments and my son was there along with my Mom for about 3 of my remaining treatments as at that time my son had just completed his junior year in high school.  I also brought a book with me and I also enjoy doing Word Search puzzles a lot so I did quite a few of them when I was there.

  Plus they did provide lunch there and the first treatment they had a Phillies theme and I won a chemo Phillies cup which I still use as I started having green tea before I was diagnosed with cancer and still use the cup at dinner time.

  Also, the chemo nurses did do a song for me and also used a tambourine at my last chemo treatment wishing me well and sending me off (it was really cute and so nice) and I was so glad when the chemo was all over with - I started in mid April of 2011 and ended my chemo the last day of August of 2011.

  For me, one of the hardest things going through the chemo was losing your hair, I knew it was temporary and that it would eventually grow back which it did, but it is not the same consistency as it once was, although now I get my hair cut every 3 months rather than every 2 months and I get a bang cut every month as my bangs grow quickly. I have a very classic cut the bob and now I like it shorter than I used to have it as it is not as bulky as I had my hair before having chemo. But I like my haircut a lot and it is very easy to take care of. Also, getting constipated was not pleasant either and I bought some over the counter tablets to help with that also. I had very little side effects going through chemo so that was really, really good and I felt very fortunate compared to what it could have been.

  I hope you make out well with your remaining treatments. Just remember, the chemo will help to get rid of any stray and remaining cells and it definitely is worth it as it will save your life so good luck going through the rest of your treatments and hope you fare out much better with the remainder of your treatments.

Cheerful

a/k/a Jane

 

frodolass
Posts: 29
Joined: Sep 2013

Thanks for sharing your experience with me. I have become fascinated by everyone's stories. It's so interesting to hear the similarities and differences. I was really freaked out the other day and hope I will be more calm now that I know what to expect.

 

I had my first radiation treatment today. It was fast and easy. I also got my PET scan results. I don't really understand it all, but the place where they were worried about was clear (aortic something or other). There is a spot that glowed in the area where a lymph node was removed, but she thinks it's most likely something left over from surgery, a little infection or something.  We'll see. I'm going to get a copy of the report and look up all the "big" words, lol.

 

Thanks again for all the support!

 

Donna

NoTimeForCancer
Posts: 462
Joined: Mar 2013

You are not a whiny baby.  The "unknown" is the worst and you would have no idea what it would be like.  You can read what we write but until you live, ain't nothing like that!  Good luck on all your future treatments!  We are here anytime. 

Rosestar570's picture
Rosestar570
Posts: 10
Joined: Oct 2013

I was diagnosed with Stage IIIc1 endometrial carcinoma in August. I had a hysterectomy and am now undergoing chemo. The plan is chemo every 3 weeks for 9 weeks, radiation for 4-6 weeks, and another 9 week round of chemo. I am on Taxol and Carboplatin. So far, so good. My legs are bothering me, but I have had no nausea. Because I am 36, I often wonder if my system will be messed up for life..but I guess that is just how the cookie crumbles. I have been documenting my journey on my blog at http://rebelcupcake.wordpress.com It sounds like everything is normal. Of course, how normal is cancer anyway?

frodolass
Posts: 29
Joined: Sep 2013

Hi!

Finishing up my 3rd week of chemo (Cisplatin) and radiation therapy. Doing really well. No significant nausea, no hair loss...yet. Three more treatments with Cisplatin (once a week), and I'll switch to Taxol/Carbo every three weeks for 4-6 treatments. I've got about 18 more pelvic radiation treatments, then I'll have three of the brachytherapy ones. Yuck!

I hated the first couple of chemo treatments, but have come to enjoy the camaraderie of the other folks I see there every week.

Finally got the PET scan. It was clear except for something glowy in the area where the lymph node was removed where there is a lymphocele. They *think* it's some infection or something left over from the surgery, but don't know for sure. I'll get another scan in a few months.

Thanks again for all the great information and support.

Donna

 

cheerful
Posts: 122
Joined: Apr 2011

 

Hi Donna:

  Glad to hear that you are doing well going through your chemo.  I did not have pelvic radiation treatments, just the brachytherapy three rounds of it. But good luck with your remaining treatments.  

  It is a hard thing to go through chemo, I had carboplatin and taxol, but just think you are doing everything you can to fight UPSC and hopefully you will keep this beast at bay and won't have a reoccurrence down the road.  Especially you do feel tired the next day I did so I just rested.  Do you have much of an appetite after chemo? The first 2 days you will eat regularly, then the next few days I could only eat 2 meals a day for a few days then I went back to eating regularly.

  I did have 3 cat scans the first year when I was diagnosed.  I started my treatments in mid April and finished with chemo the very end of August and then started 3 brachytherapy treatments the end of Sept. and finished in mid October of 2011.  

  I lost my hair after the first chemo treatment of carboplatin/taxol almost 2 weeks later.  I then started wearing my wig and wore it for about 11 months then my hair was growing in and by October of 2012 I had my first haircut.  My hair had grown long down to my shoulder in the back and I had it cut off to a one length bob. I keep my hair shorter now as I my hair is thick like it was before chemo, but the consistency of my hair changed after it grew back.

  Anyway, good luck with the rest of your treatments and keep us ladies here posted.

  Also, thanks for your wishes for my 2 year anniversary of remaining with No evidence of disease - I just hope it will remain that way for now and for the future. We do have to enjoy each and every day that we have that is my motto as we don't know what is down the road for us - but try and think good thoughts and have a positive attitude as well that will really help you going through treatments.  Also, it really helps to have support from your family and friends when going through chemo. I received a lot of Get Well cards from them when I was going through chemo and it really helped me a lot and also received a few gifts from family and friends.

Cheerful

a/k/a Jane

 

 

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