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Another Dr's apt with not so good news.. Another Dr's apt with not so good news..

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Unread 11-25-2003, 06:13 AM
Another Dr's apt with not so good news..

Well my mass is growing again. Soooooo, my new chemo will be Topotecan. Has anyone had this? I was told my hair will probably not be affected. It is about 1 inch long now. So, here I go again with another chemo drug. I will be going weekly still four weeks with chemo and the fifth week having an exam by the dr. Then four weeks of chemo, fifth week with Dr.

Tomorrow is my first treatment with this drug. I'm glad it was the day before thanksgiving, cause usually the next day is fine, it's Friday, that I will start getting sick.

Good news is, I haven't collapsed again. I'm taking it easier. Although if I get up too fast, I do fall. And I occasionally loose my balance and fall. Maybe it's an inner ear thing, and not the chemo. I'm still in constant pain (that's my indicator that the chemo is working or not) I told the Dr, last week that I knew the chemo wasn't working any more. He asked me how I can tell, I told him, I'm in pain, and I'm bleeding again.

I'm sick of bleeding, I thought once I had my hyst. I wouldn't have to buy those darn pads anymore. But now, I'm buying them my the truckload it seems. Can't get enough of them.

The job front.... Well, I will be going on long term disability either next month or in Feb. Depending on my hours. If I can keep this medical leave until Dec 26, when I started it, it will kick in again at 100% for two months, so I have to wait till HR tells me how many hours I have left this year for my medical leave. Cross your fingers that it will extend until the 26th.

I talked to my Dr about this, and he said it was a good idea to go on long term disability.

I would have to go on Cobra which is VERY expensive. Is anyone on Medicare and/or Care Link. I would like to know what the coverage is on those. Cause if it okay, then I will go on that, instead of keeping my coverage through my employer. Oh did I mention, that once on long term disability I no longer work for my employer, that is why I would have to go on Cobra to continue my medical coverage. Oh well, I expected it. They can't keep me on their payroll forever, and I was very lucky that they were reasonable, and let me work from home, and the lot for 10 months before they got someone to replace my position.

Anyway, sorry for the lengthly post but, I haven't posted for awhile, and had alot to say.

Everyone have a wonderful Thanksgiving, and 's and ers to everyone!!!
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Unread 11-25-2003, 06:45 AM
Another Dr's apt with not so good news..


Please know that I'm praying for you as you enter this new trail on the journey. I'm sorry that things are not going better than they are, but we're all in the hands of Someone greater.

Blessings and peace.
Unread 11-25-2003, 09:21 AM
Oh Tammy, I was so sorry to read your

post. You sound ok, though, and that is a good thing. Keep your spirits up and let this new drug KICK SOME BUTT. (not yours, just those pesky cancer cells). Let's pray that you get relief from the pain.

You are in my thoughts and prayers.
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Unread 11-25-2003, 09:45 AM
Another Dr's apt with not so good news..


I am sorry you have been going thru so much for so long. You are in my prayers. I hope this new drug gets rid of that tumor. Are you still trying the blood roo? There was a woman having chemo at rhe same time as me that was on topetecan. She said the side effects were not too bad and it didn't cause hair ;oss. I hope yopu have a blessed Thanksgiving
Unread 11-25-2003, 10:00 AM

Darn it! I was hoping for good news from you. I don't know much about topotecan (Hycamtin) but I know it's widely used. Give it your best shot--it may be THE drug that'll wipe those cells out once and for all. As you have it, visualize those cells, sitting there laughing that they survived the last chemo. They're getting ready for Thanksgiving. Then, pow! Topotecan. Ugh! The ones that don't get blasted right away will find the fastest way to get out of your body. We're all praying for you. Topotecan is a good drug. Please be sure to post on it--I've never had it and would like to hear a first-hand experiencer.
Unread 11-25-2003, 10:20 AM
Another Dr's apt with not so good news..


I really pray that Topotecan is the drug that finally cures and heals you. You have been through a lot, and maybe you feel like me - I'm tired of having cancer, but we still go on.

Fingers plus toes crossed, as a Norwegian dear friend of mine says, that you keep that medical leave until the 26th.

ers and s
Unread 11-25-2003, 11:04 AM

Hi I was on Topotecan for half of my chemo cycles for OVCA. It was a really easy chemo to deal least for me it was. I didn't get sick at all. I also didn't loose my hair...which is a plus. I got very tired the third day after.... Taxol is the chemo that really gave me problems but i was on it for only 4 cycles..if i had had to be on it for all 8 I don't know what I'd do??? Good luck, it should be easy to deal with.
Unread 11-25-2003, 12:22 PM
Another Dr's apt with not so good news..

Dear Tammy,

OK. Here is my question. Is there any way that your doctors can do some sort of chemo sensitivity testing? From what my doctor says, this kind of testing can at least knock out those chemos that have no hope whatsoever of working. It seems like that would be easier than making you go through so many chemo regimens that don't work.

I know some hospitals don't do this testing, or make their patients pay for it. You would also need frozen tumor sample to test against. Something to keep in mind, especially if something was saved in the hospital storage freezer, or if you have to have another surgery of some sort.

I don't know anyone who's taking Topotecan, but let us know how it works for you. Has your doctor considered Doxil or Gemzar? I have been hearing fairly good things about both drugs. I believe the most positive news on Gemzar occurs when it is combined with Carboplatin. I can't see your signature while I'm typing, so I don't recall exactly what you've already taken.

I'm sorry to read about your inner ear thingie and losing your balance. And the pad nightmare! None of that is fun! But . . . you are alive with a good man and kids, so that counts for a lot! :-) If we're here typing, we have something to be thankful for!

With COBRA, you must IMPLORE your work to extend the coverage to 29 months. Given your medical history, this is imperative. Even if you were in remission for five years, your rates would still be double, triple or quadruple the rates of people who hadn't gone through cancer treatment. The standard COBRA is 18 months, but you CAN get it extended. You will have to fight for it, though. Be sure you are prepared to do that. It is important. Once COBRA ends, you may have a difficult time finding any type of insurance that is affordable because of your pre-existing condition. So make sure that you do your research on this before signing anything. (A girl in a support group I just started attending just went through this.)

Is COBRA really that expensive? I seem to recall that mine was about the same price as I pay at Kaiser: $185 a month. I guess when you're working, your employer pays part and you pay part, so it seems like less . . . but I think the total is still around the same.

In any case, you need to be sure to look a few years out. Don't just think about next year. Think about four and six years from now. That will help you make the best decisions and negotiate the best exit package possible. I'm sure your employer will be understanding and helpful with respect to your health situation. It sounds like they've been really good to you so far.

I'm glad you are still smiling and hope that the pain and bleeding go away soon. I think about you often, dear Tammy! I hope you are still journaling/scrapbooking, and that your family live is making you smile!

Many s!
Unread 11-25-2003, 01:47 PM
So sorry

Tammy. What crappy news. You have been through so much! It's just not fair.

I see from your signature that you had the same cancer that I had, and at the same stage. I am assuming that after your surgery they didn't do radiation or chemo. Is that correct? What kind of cervical cancer did you have? I was not able to have surgery, because of the size and location of the tumor. So I had radiation ( 3 day internal and 25 external) and 6 doses of cisplatin. I do know that cisplatin can cause hearing loss, perhaps this explains your balance/ear problems? I'm guessing here.

It stinks that you have to be in pain and be bleeding! Does your doctor have any suggestions for either? Where is the bleeding coming from? Can your doctor prescribe something for the pain?

This all STINKS!!!! I hope you get some relief and some good news, SOON!!!
Love and hugs,
Unread 11-25-2003, 04:57 PM
Another Dr's apt with not so good news..

I am so sorry to hear that the chemo was not working any more. I was so hoping to see a post with good news from you. Hopefully, this one will be the one. Your in my thoughts and prayres.

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