OK, now i'm freaking out

I never had a port for any of my chemo.  It never hurt, but ALL of my veins are now shot, can't even draw blood at all.  I wouldn;t worry aboout the first one, but I think it is better to save those veins.

I had stage IVb UPSC.  My surgery was 5/10/10.  My chemo wasn't started until 6/11/10. I was kind of worried about waiting that long for it, especially after finding out I had the highest grade of UPSC, but it all worked out in the end.  I had a difficult surgery, with having both cancer surgery and gallbladder and appendix surgery at the same time (my CT scan had found gallstones). It took quite a while to heal from it.  Although starting chemo right away doesn't give you time to get used to the idea of having whatever stage it turns out to be, I think it's great that your doctor is so proactive to get things going so fast.  The sooner it starts, the sooner it's over.  My gyn/onc told me he has a number of patients surviving who were stage IV, so there is hope for you even if it is that high a stage.      

If it's high grade, it'll probably be grade 3, which is what mine was.  Mine was considered stage IVb (the higest possible stage) because it had gone out of the pelvis.  I had it in my small intestine.  There wasn't much there, but just enough to push up the stage.  The high grade cancers I've seen mentioned on this website are what I had, UPSC (uterine papillary serous carcinoma), and MMMT (malignant mixed Mullerian tumor).  Although they're both rare and aggressive cancers, I've seen a lot more women with UPSC than MMMT on here.  I didn't have any lymph node involvement with mine, or at least none was ever found.  My cancer spread laterally, I guess.  Mine was in the uterus, both ovaries, the omentum, and, as I mentioned, the small intestine.  I'm glad you're getting your port in so early and getting your treatment started.  My biggest complaint about getting my port was that the room where it was done was sooo cold, 63 degrees.  They couldn't pile up enough warm blankets on me.  After I got my port, my biggest complaint was some discomfort from having it get hit by the seat belt.  I bought a lambswool cover for the seat belt, but even that didn't solve the problem.  I got my port put in on my right side, so it bothered me while I was riding as a passenger in our car.  If they put it in on the left side, it may bother you when you're driving.  My blood vessels were close to the surface.  Not everyone has that problem, so you may or may not feel discomfort from the seat belt. The radiologists decide which side is best based upon what the blood vessels on the right and left look like.  If your oncologist gives you carboplatin and taxol (the official name is paclitaxel), be sure to get a wig, cap, scarf or turban (if you plan to use one) soon.  Sometime between 10 and 14 days after the first chemo, you'll probably lose most or all of your hair.  I think I lost mine at 12 days out.  Some women shave it off to avoid the mess later.  Mine mostly came out in the shower, but I also had a hairy pillowcase. Expect to lose hair everywhere, including eyebrows and eyelashes.  It'll probably start coming in about a month after the end of chemo.  It comes in really soft feeling and may have a different color or texture for a while.  I found the nurses were wonderful, and other people have said the same thing about theirs in other hospitals.  I guess the ones that work in cancer centers are a special breed.  I didn't find chemo to be as bad as I expected.  I ended up short of breath halfway through my treatments, but that was probably because I'd refused the Neulasta shot.  I had a blood transfusion to remedy that, but it actually didn't make much difference.  Six months later, I was diagnosed with hemochromatosis (a genetic disease that causes the body to store too much iron), so that was causing most of my problem with the shortness of breath.  My iron level was extremely high.  I had to have blood taken out of me to remedy that problem.  It was strange to first get the transfusion, then get blood taken out of me a few months later, but it probably saved my life.  My little brother had a fatal heart attack just before I had my transfusion.  I later found out that the males on my father's side of the family had a strong history of hemochromatosis, so my brother probably passed away from having had that.  Sorry for going on so much here.  I wish you luck in your treatments.  You're well on your way.   

Mmpeterson said:

The unknown of how I will

The unknown of how I will respond to chemo makes me kind of nervous but many say they didn't have any trouble with it besides fatigue.  I was also told to take the pain meds and anti-nausea as directed and I shouldn't have any trouble plus drink lots and lots of water with lemon.  Eating is what I want to concentrate on the most because I know that keeping my nutrition up will help keep me healthier to get through the treatments.  I stay away from most sugar except the natural kind in fruits because I have read that cancer loves sugar.  I snack most of the day instead of big meals so I am hoping that will help a lot.  The hair falling out may be the worst for me so I am trying to get ready for that.  I am going to get a wig to match what I have now but the idea of no hair is rather scary. As long as the chemo is very effective and gets me to NED then it is a small price to pay.  Maryanne

Ask your oncology nurses about taking Miralax or some other treatment for constipation during treatment. That is an unfortunate side effect of many of the common chemos and it is not something you want to have to deal with if you can nip it in the bud early. I took Miralax twice a day every day after a VERY bad bout of constipation during my first chemo cycle. The nurses never let me forget that I disregarded their warnings about it...

Mmpeterson said:

The unknown of how I will

The unknown of how I will respond to chemo makes me kind of nervous but many say they didn't have any trouble with it besides fatigue.  I was also told to take the pain meds and anti-nausea as directed and I shouldn't have any trouble plus drink lots and lots of water with lemon.  Eating is what I want to concentrate on the most because I know that keeping my nutrition up will help keep me healthier to get through the treatments.  I stay away from most sugar except the natural kind in fruits because I have read that cancer loves sugar.  I snack most of the day instead of big meals so I am hoping that will help a lot.  The hair falling out may be the worst for me so I am trying to get ready for that.  I am going to get a wig to match what I have now but the idea of no hair is rather scary. As long as the chemo is very effective and gets me to NED then it is a small price to pay.  Maryanne

I remember that feeling well!!!  I DID NOT want my hair to fall out but just as you were told, it happens fast.  In advance of it I cut my hair 2x the 2nd time was really short and just before my 2nd treatment I had it shaved since it was coming out so much.  I didn't want that straggly look and it helped to be in control of when it went.  Just an FYI most hospitals and cancer centers have things for sale but they also have things that were donated to them- you have to ask- they were so very sweet to me and they gave me several things to get me started.  I never did enjoy the wig   It was hot and scratchy for me.  I have really liked the scarves with elastic so I didn't have to tie them and the little hats. 

I just finished chemo (taxol/carbo) on the 21 of Sept. and I already have a full head of fuzz.  I saw a little video on Youtube (yes I haunt it looking at everything ahead of time from the surgery, port install, hair loss, 1st chemo, hair growth etc.) and every 10 days she got more and more hair! 

I go without cover at home all the time- it felt odd at first but I got over it.  I haven't gone out that way and probably wont.  I admire the ladies who do and can but my head, ears and neck get so cold.  Now it's raining so better to keep a lid    I didn't think I could do it but I did and YOU CAN- I promise you!  Try and have fun with it.

I'm thinking about you (((HUGS)))

Mmpeterson said:

I am going to the Look Good

I am going to the Look Good Feel Better workshop on the 27, 2 days after chemo.  It is supposed to be a fantastic workshop to learn how to deal with makeup and hair to make you feel better while you go through this process.  I am looking forward to it and hopefully the side effects of chemo will hold off for a day or two so I can go.  From what I understand day 3 & 4 is when the side effects hit the hardest.  Thank you Nellasing for the hugs!!  Maryanne

I went to the Look Good Feel Better workshop and had a lot of fun.  I don't wear a lot of makeup, but it was great to personally connect with other women dealing with cancer and there was a lot of laughter.  And they did share a lot of good tips.  I think you'll enjoy it.

I wore everything...  I had a wig, many scarves, knit caps, and sometimes I went commando.  I bought the wig before I started chemo, and then gradually added other headware.  The pre-tied scarves were probably my favorite, and I wore them most of the time.  Helped protect my head from the sun, as it was late summer here and still pretty warm when I started chemo.  I generally wore the wig for social occasions.  It does take a while to get the hang of scarves if you're not using the pre-tied ones, but like Kim said, there are some great videos on YouTube.  In fact, I wore one style I had found to my Look Good Feel Better workshop and the women running it wanted to know how I did it!