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My cancer is back :(

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I've been having bloating recently so I had my CA125 taken and went to see my oncologist. My numbers are up from 122 to 1,467. It is so strange because I don't actually feel unwell and where I usually get fluid around my lungs they are currently clear.

Anyway I will be having Topotecan. It is a weekly cycle where you have chemo every day for a week and then 3 weeks off. I will have a port as my veins have kind of disappeared from the last onslaught!!!! I will be starting 12th September.

My biggest hope is that I can still keep my hair and that it doesn't make me feel ill. OH, AND IT WORKS :)

Please, has anyone else had this chemo and how have you been on it?

Tina xxxx

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Damnit! I'm so sorry Tina. I can't help you about that chemo. As you know, I'm following behind you so far and I expect to learn from you and others as I go. I stopped taking the carbo/taxol on Thursday (it is now nearly 7am on Saturday). Currently at 19, have yet to learn what the number will be when I next see my oncologist in a couple of weeks. He wants just to keep an eye on it for a while till, like yours, it shoots up again. I know what you mean about feeling ok even though it's growing somehow. Like you I have had some fluid on the lung but not nearly as much as you. I had a cough to start with but didn't realize what was causing it, didn't know it was the fluid built up in my abdomen. Didn't feel unwell at all even with all the fluid.

Here's hoping that you stay feeling ok throughout this lot, AND that it works!

AussieMaddie
xxx

VickiReed's picture
VickiReed
Posts: 66
Joined: Dec 2010

I so hate hearing that you have to go back into battle mode again so soon.
I am not familiar with Topotecan but I sure hope it does the trick for you.
This past week I went to get my 5th dose of Doxil and due to supply shortages I
had to switch chemos. I am now taking a daily oral chemo ,(generic none the less!)
Cytoxan, and if it works he is going to keep me on it and use the Doxil as plan B instead of switching me back and forth.
I hope you don't lose your hair again. It is also a side effect of the cytoxan but the
good doctor doesn't think with this dosage that I will lose mine. Keep us posted.
XXXX
Vicki

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I really believed things were going to be ok with you. Especially after they said they found no new ascites. I know you are discouraged and frightend. I am glad you will get treatment started right away. I know nothing of that chemo but I am sure others will give you all the info. I am glad you are feeling well. Maybe that will make it easier to tolerate if you are strong going in. Do you think you will be able to work with that chemo schedule? I agree losing hair (making cancer visible) and being ill are the biggest bummers.
They did tell us we would have to be in treatment on and off so I guess this is just one of those little bloopers we have to get thru...just remember there is sun on the other side. You got thru all that other stuff just fine and came out feeling good and you can do it again.
I am off to get my CA-125 done on Thursday. My first one since I ended chemo 3 months ago. And of course I am scared to death but feeling well.

I will be interested to hear all about the treatment and will be praying for you each day.
Hugs!

Linda

SOPHIE333
Posts: 92
Joined: May 2011

****. But you will get through this also. You are in such a good condition as it seems and that is a fortune. As we use to say, this is a chronic disease and will go on and off chemo as the journey keeps on. Not familiar with the chemo but I hope it does wounders for you. Please keep us posted. You will make this one through.

Love,
Sophie

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Tina,

I am so sorry to hear this :-(

I have no knowledge abot Topotecan, but I do know that you are tough and have a beautiful, fighting spirit. Don't be afraid of the port, it is really a convenience to have.

I hope that this turns out to be just a crappy and quick detour on your way to good health and happier days...

Strength and love!

Ray

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Thanks so much for all your encouraging words. I actually feel really well and the only discomfort I have is at night when I lie down I get pains in my tummy. But apart from that I am fit and am managing to keep running with my friends at my running club.

I am kind of pleased about the port as I think it will make the whole chemo regime much quicker and easier. Can I ask, how does one go about having a bath or shower? Will I still be able to go swimming?

Love Tina xx

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

Once it heals, swimming, showers, everything is fine (except during chemo). It's not like the old days where the chemo lines came out of your body. The chemo nurse feels for it (or can see it, as it is a lump under your skin) and inserts the needle into the port. When not being used for chemo, it is not open to the world.

Please ask for Emla cream to gob ("gob" being the operant word) over your port about an hour before chemo. Then cover with plastic wrap. That way, when the nurse accesses your port, you won't feel the needle. Emla is WONDERFUL (Rx only, and many drs don't think to prescribe it, so you must ask for it, like I did)!

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

"...everything is fine (except during chemo)"? Not sure what you meant by this but I would say "even during chemo"--no vein pain! It is still possible for the IV to infiltrate (happened twice with me) but that should be discovered BEFORE the chemo runs in as there is always a saline IV started first.

The nice thing about having an implanted port is that it leaves your arms/hands free...that's great for those trips to the bathroom.

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

that while not in use,the port does not stop you from doing anything else. During chemo, it helps protect your vein. My "except during chemo" refers to while the port is not being accessed, it doesn't affect how you live - swimming, etc, is fine. During chemo, you must be careful because you don't want the needle pulled out or exposed to things that can enter through the needle.

Yes, it leaves your hands free for doing things (reading, knitting, going to the bathroom, etc). And only appears at most as a lump under your skin (I had a low-profile port, barely noticeable. However, power ports tend to be higher profile, so the lump may be visible.)

As far as I'm concerned, a port is the only way to go. After chemo, when the port was removed, my veins were a mess, and painful. I can't imagine what it would have been like to get the chemo directly into a vein.

Best Friend
Posts: 222
Joined: May 2011

Well, this is what i am afraid of for my mom. All this crap u go through to have it happen all over again. some bullcrap. I will say some prayers for you and u say some prayers for me that i never meet another man in my entire life. Hahaha! My new boyfriend is my mom and taking care of her. I wish i didn't worry about such stupid things when u guys deal with so much stress! I need a lesson on how to do it!
Your replies to me have always been so delightful and i really hope that you benefit from this new treatment. You so deserve the best!
P.S. My mom has the port. Very helpful. No painful veins and i never hear her complain about it. She showers just fine.

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Tina...
I was so sorry to hear it's back. I don't know the drug so can't comment but it must be one that's effective otherwise they wouldn't give it, would they?

One thing in your favour is that the ascites seems to have disappeared. I know that the fluid has been a problem for you so at least you don't have to have it drained which is a good thing in your favour so you're starting from a positive position.

I can empathise with the pain in the abdomen and the sleeping. Hopefully, once the chemo kicks in, the pain and discomfort will recede. I'm just summising that. When I'm sore that way, I take a mild sleeping pill and a few Diclophenic which seems to settle me down for a better night sleep than I would have had.

I'll be thinking of you. :)

Sue

stella65
Posts: 152
Joined: Feb 2011

I am so sorry to read you are having to have more treatment, I hope you don't mind me asking but I thought you would not have any more chemo until you has symptoms? This is what they have also told mum, is there a reason they have now decided to give you chemo just based on your elevated CA125? Thanks X

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have very uncomfortable bloating and occasional pain in my tummy. I think the jumpo was quite high so they are giving me the chemo next week.

Tina xx

stella65
Posts: 152
Joined: Feb 2011

Thanks for the info Tina, I will be thinking of you next week, I hope it all goes well and gets you back on track..... Lots of loveX

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

double post

katkritic
Posts: 4
Joined: May 2011

Hi Tina,
My mom has been battling ppc for almost 6 years now. She has been in remission twice but now we're at the stage of managing it so there is no chance of remission. She is on Topotecan once a week, 2 wks on and 1 wk off. She is does experience side effects, mainly constipation and diarrhea, and a little nausea and some fatigue. According to her oncologist, if you have the daily treatment for a week, you will have hair loss. Since she is on a different schedule, her hair has definitely thinned and she's ok with it. She was originally going to be on a daily schedule, but we felt it would have been too much for her to handle. Her quality of life is pretty good. Much better than when she was on Alimpta (used off label, primarily for lung cancer).

Hope all goes well for you...Cat

stella65
Posts: 152
Joined: Feb 2011

Hi Tina, I was wondering how you are doing, hope you are ok X

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Thaqnks for asking, I have recently posted a new topic

Tina xx

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