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Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Linda,

I try to be tactful, but when I am worried about someone I get a little bolder. I am worried about you.

You said you are going back on taxol. My gyn Onc said she would use topocatan (I do not have the spelling, I am sure we can find it online) if I relapsed within eight months. I am not sure that is given with taxol but I think so.

What I don't understand about these chemotherapy regimens is that regardless of stage we are all given the same: six cycles of carbo/taxol. It would seem to me that for those of us with more than a stage 1a would need more chemo to start with. I remember Ted Kennedy's son getting two years of chemo with his leg cancer. And the biker Armstrong had quite a long treatment too I believe (He had met to brain).

What I am getting at is that we only know your CA 125 is up and you have a few enlarged lymph nodes. You were Stage III. Wouldn't it make sense to try a more agressive approach yet? Is it really time for salvage chemo yet? Perhaps you need a second opinion.

I don't mean to throw a wrench into your plans and cause you any more suffering. I am not an oncologist and certainly not a Gyn Onc. But my Gyn Onc is young and her response for treatment would be different from what I hear from you.

I apologise if I am sticking my big nose into your business. Perhaps if a gyn Onc would explain to me why everyone gets the same chemo regimen regardless of stage I would understand.

Please don't drop off the board. We are all living with cancer in one way or the other. I did it with breast for ten years. That mess could still recur but I have had ten wonderful years as I went forward anyway. Forgive me if I overstepped my bounds.
Love,
Diane

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Diane, you aren't butting in; you could never 'butt in' with me! I need everyone's input and any 'virtual second opinions' you can get from your own oncologists are VERY welcome! I'm not leaving this Board either. It's just that this is WAAAAY too busy a time of year to have cancer! Maybe I SHOULD have waited until after Christmas to start my chemo. I don’t have my tree up and still don’t have the ‘wow’ Christmas gifts bought yet for my grandkids, and Jakey’s playing basketball now and my girlfriends all want to schedule our ‘Christmas lunches’ where we exchange our gifts (none of which are wrapped and none exactly what I’d feel good about giving). It’s so important to me now to ‘make memories’, and yet with the weekly treatments and all the other activities, I don’t know when I’ll have time to bake cookies with the kids or make gingerbread houses, yet alone go shopping to get the ingredients. But I’m afraid to wait and do NOTHING until after Christmas.

I think Christmas coming played into the decision for the 'taxol only' for 4 weeks. I was given the option of just waiting until after the holidays, and I think part of the 'taxol only' decision for the 1st 4 weeks was a 'quality-of-life' one. My oncologist seems to feel that the weekly taxol is enough to hold the cancer in check within the lymph nodes, and weak enough that I won't feel sick at all. And it just MIGHT be enough to knock my CA125 down and shrink those nodes. If I don't make any progress after the 4 weeks, we'll be switching to a new chemo drug, or by then it may have been enough time for them to add carboplatin to the taxol. (They like to wait as long as they can to re-use carboplatin so that you don't get platin-resistant and they lose that option. My gyn-onc feels 6 months from last chemo is enough; my chemo-onc likes to hold out longer if he can. The other concern is that, with all the radiation I had, my bone marrow (platelets, WBC & RBC) may tank quickly when I get carboplatin again. It's been 9 months since I finished chemo (March 26) and 5 months since I finished radiation.

So, I'm start chemo on Monday (2 days away), with the hope that the low dose of taxol won't make me sick, but should start shrinking those swollen nodes and hopefully hold the cancer to just the nodes and no organs. Doxil is anothert possibility if my CA125 doesn't drop after 4 weeks of taxel. Doxil is given every 4 weeks, but has side effects like very painful palms (like skin chapping) and the bottoms of your feet can get very sore. The plan is balance ‘quality of life’ with holding the cancer in check, and they try and keep the chemo as light as they can now that they aren’t even trying for a cure any more.

I didn’t really have any recurrance symptoms that I can put your finger on. I did have a tiny discomfort in my armpit sort of like you feel when you graze yourself with the side of the razor when you shave. But it really was painful when I had to keep my arms over my head in my PET-scan for 20 minutes so they could scan me under there. And last night my armpits hurt enough that I couldn’t lay on that side to sleep. I had the grandkids overnight and then took Jakey to his 10am basketball game (He scored 4 of their 12 points & they won!) After they went home from the game with their dad, I came home and called the weekend ‘oncologist-on-call’. She pulled my PET slides and said that the pain was likely from the inflammation around the malignancy, and that the pain would probably get WORSE after the first couple of chemos, and then the chemo would start knocking back the node and the pain would go away. And when I am at my laptop for a lot of hours in a row working, my torso would hurt almost like I’d done too many sit-ups; it felt like muscle pain under my rib cage. I attribute that to leaning forward to see the screen when it’s on my lap.

Someone asked about other women in recurrence. There was just 1 who contacted me and I’ve already forgotten who it was (name). She used to post about her mother who had UPSC. The email I got was that her mother had recurred but she didn’t want to scare the women on the Board with that news. It wasn’t like there were dozens of recurrances that weren't posting or anything. So please don't build too too much into the few recurrances we have had on this Board. We have far MORE ladies in disease-free remission, FAR more! Remember that!

Doxil can ONLY be given with a port. Even though I am starting out with just taxol, I didn’t want to wait until my white counts and platelets tank and then try and have surgery for the port. So I am getting a port next Friday. It’ll make it easier with the weekly treatments. I was so happy I made it through the initial chemo with no port, but I think I really need to bite the bullet this time.

Love you guys. I am just so sorry that I have frightened so many of you. This will NOT happen to you!! Okay???

The more ‘normal’ I act, the better my family does. They were all soooo pitiful at first, so many tears that you’d think I was already dead. But busy life almost immediately came to the rescue, and there simply is no time for any of us to dwell on this. The boys have a million decisions to make in order to take over my business January 1, and with all the kid’s holiday things, I think they can all avoid thinking about this. The grandkids both curled up with me in the big chair and watched ‘Monsters VS Aliens’ last night, one on each arm. My underarm was KILLING me doing that, but it was something we all needed; no talking about it but just reassurance that things haven’t really changed yet. Emily asked me as her tucked her in “You’re always gonna have cancer now, aren’t you?” and I said “Yes, but you can see that it’s not really any different now than before we knew. I’ll just be bald again.” And she said “And then you’ll get that soft fussy crewcut again; I love that softy hair!” And she was fine with it.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Thank you for your answer. I feel better now. Just what you need, making us in the group feel better! I love you! I live in Virginia. I may get energetic someday and come visit you. I think they have a good plan in place. I have a port and you will like yours too; it makes life so much easier.

If you have trouble with any chemo you just have to take other meds to help. Don't be afraid to treat side effects. I have a reaction to taxol but was able to handle it with other meds. I have neuropathy and take lyrica and some other stuff and it controls it beautifully.

My hubby and I brought all the stuff to decorate down from the attic and we are sitting in boxes. We decided to do "christmas light" this year. we're not putting up all the stuff as we tend to go overboard. We're not doing as many presents. We may not even do outdoor lights. Our focus is going to be our family and enjoyment. So I want you to take it easy too (you super achiever).

If it makes you feel better my lower abdomen feels sore after I sit at the computer and it also hurts under my ribs. I think it's the sitting and radiation.

Don't withdraw away from us. We all need you. The holidays are wonderful but they can eat an overachiever like you up! so take it easy.

Love,
Diane

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I noticed a tiny clear dorless discharge on my underpants when I went to the bathroom just now, which is new, but reminds me that I did have, looking back, what may have been symptoms of a recurrance when I was in Greece (Oct. 12 to 26). 2 days after my 11 hour flight, my pelvic mound swelled up. I was too far from home to call my oncologist, and within 36 hours it was back to normal and stayed that way ever since. That day I did have a little discharge in my underware when I took them off at days' end, but then nothing like that until today. My oncologists both put the pelvic swelling in Greece down to lymphodema from the long flight at the time. But since today I have a similar clear odorless discharge. The last recent CT and PET did show a little bit of fluid collected on each side of my pelvis.

So I guess the 'symptoms' I'd say to look for may be this small discharge and any pelvic swelling. That's something you should mention if it happens. All the oncologists seem baffled by the underarm lymph node lighting up on the PET, so I don't think that's a typical place to be looking for a recurrance. & there's a million reasons for your under arm nodes to swell or hurt, so don't let that make you think recurrance if it happens.

Anyway, I had a lovely evening. Vic helped me set up the tree and I called the grandkids to come over and help me decorate it. I have photo ornaments of each of them from every year of their lives and they love hanging those, and bird ornaments that were my grandmother's that hung in my tree as a girl, and so many beautiful hand-blown balls and 100 glass ice cycles. It looks so beautiful! We played 'Manheim Steamroller' Christmas songs and danced goofy dances to the tunes. The kids stayed for dinner. I swear, my underarm hardly hurts when they are here; I forgot all about it!

And when they left I wrapped my gifts for my "BFF" Carol and she and I are going for a fancy 'girls lunch' tomorrow to exchange our gifts. I'm actually in the Christmas spirit! How can this be when my worst fear has happened? I don't know, but I AM happy, sincerely.

deanna14
Posts: 738
Joined: Oct 2008

So happy to know that despite all of this... you are enjoying yourself. Really that is what this life is all about. Enjoying those that we love, doing the things we love to do with them.
Have fun tomorrow.
Lots of love and cyber hugs to my friend!

bella09
Posts: 37
Joined: Mar 2009

I am sorry to hear about your reoccurance and all that you will be going through. I am happy that you have such a close family and this site to help you through it. I feel in my heart that you will make it through this. You and all on this site on in my prayers.

Jean

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Linda, I did some research before making the decision to get my port. Most women reported that it was a good thing. As I've mentioned here, I still have mine 10 months post chemo completion. I'm not a pessimist, just a realist about the high recurrence with UPSC and so far so good (my good luck charm theory is holding - knock on wood).

So fear not, you will be sore for about a month, but then you will not notice it. I am "pumping iron" and swimming alot lately and have no problem with the port - the vascular surgeon who inserted it was excellent - every nurse that accesses it raves about it. So enjoy your port - consider it an early Christmas present to yourself. I remember reading your posts about your poor veins.

Blessings and light to you. Mary Ann

Kaleena's picture
Kaleena
Posts: 1226
Joined: Nov 2009

Hi Linda:

I just wanted you to know that I still have my port in since October of 2005. I get it flushed every month since I have been done with chemo since May of 2006. Before I was waiting for the day when they would take it out. Now that it is still in, I just go with it. It doesn't get in the way. Sometimes, though, when I first had it if someone gave you a BIG hug, you may feel a pinch.

It is a lot easier than looking for veins!

Kathy

PS Although now I do not know why they put one in since I was clear at staging and I was only going for preventative treatment?

PSS Also, I am a stomach sleeper. I can now sleep on my stomach too!

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

I'm just sayin'

Claudia

deanna14
Posts: 738
Joined: Oct 2008

I would have left mine in for the CT scans and blood draws, but it never worked properly from the beginning. It was becoming increasingly more difficult to draw blood from and was causing a lot of aching in that shoulder. So, I had it taken out after the doctor told me that if I ever needed chemo again, we would have to put a different one in. :(
The literature that came with my Power Port said they can be left in for up to 5 years if properly maintained with the monthly flushing.

howdybooth
Posts: 44
Joined: Aug 2009

Linda, I too am sorry to hear what is happening to you. I haven't been on the site for a while, but it is my oldest sister fighting uterine cancer. She completed her radiation treatments at the end of October and had a PET scan just this past Monday. Sorry to say they found a small spot on the back right lobe of her liver. We are once again back in the fight. It looks like surgery is in her future followed by chemo. I will keep all of you in my prayers!!!

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