Starting Chemo in JAN 2007

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  • Nancyab
    Nancyab Member Posts: 276
    edited March 2007
    Wow, I finally understand the insurance charges.. thanks Rebecca, you explained it so well. Where's the book "Insurance Woes for Dummies" as I need a copy for every room in the house.
    T4T I get blisters on my hands very easily, I was cutting coupons the other day and within minutes I had a big blister on the inside of my thumb. I was amazed at how thin my skin is.
    I have Taxol #3 tomorrow at 1:00. Today for the first time I noticed my feet burned when standing. I too, have been slacking on germs and not being careful. It's just my hands are so dry I can't stand to wash them every time I touch something. I bought some of that anti- bacterial hand lotion from Bath and Body and now I can't stand the smell of it. Maybe its the lack of nose hairs but smells get to me bad.
    I know I am not suppose to clean up after the cats, but my DH is always at work and I couldn't take it anymore so I put on some gloves, a bandanna over my mouth and nose and cleaned the litter pans. Then I prayed I wouldn't pay later for it. Wouldn't ya know it, as soon as I was done, a cat went and dirtied it up. Just like a kid! You would think that for all my effort she could of waited at least an hour? LOL. Be well Chickies I'll talk again soon.
    Nancy
  • t4t
    t4t Member Posts: 28
    edited March 2007
    thanks Jan,

    In our 36 years of marriage I have always had an answer. Always.

    The hardest part is being helpless when she hurts so bad.
    You're right. It isn't fair.

    T
  • NOLONGERREADINGORPOSTING
    NOLONGERREADINGORPOSTING Member Posts: 778
    edited March 2007
    How's this for an insurance beef: you are Stage 4 and you've done herceptin, zometa, taxol, and just about everything else and your cancer is progressing. You've got one, maybe two years if things keep going the way they are. There is still one drug though that holds a lot of hope, Tykerb. It just got out of trials. Your insurance won't pay for it.

    I didn't make this up.

    Lot going on today, I'll try to catch up when I can. Tae, I hope you're feeling better soon. Recovery is in sight. We are the lucky ones.

    Mizsissy
  • Caya
    Caya Member Posts: 971
    edited March 2007
    Good evening all,

    The steroids for the Taxotere have me a bit wired, so I read through today's posts -

    DAr 1 and Viddie - congrats on being done ( at least for awhile - Viddie, when will you start the Herceptin?)

    Lynn - I had a one month post op visit with the BC surgeon, and another scheduled in July- about 7 months post op. I think my scar is okay too, but let him take a look.

    Jan - Let me be the first on this board to wish you a Happy Birthday ( on the official day) and good luck on your chemo - I think it's #4 FEC?

    Joni, shorti - I also had a clean mammo and ultrasound, 3 1/2 months before I had the breast reduction when my plastic surgeon found my 1.7 cm. tumour. MRI showed another tumour (which turned out to be 1 cm in the path. from the mastecomy) in the right breast, left breast was okay. You can bet I'll be having MRIs from now on - my dense breasts should have been getting MRIs like 5 years ago... Of course if the genetics test comes back + the left one is coming off, ovaries too. I may take the ovaries out anyways, I have an appointment with a gyn onc. in 2 weeks.

    Amera/Joni- I also forget that I am in chemo, and sometimes overdo it on what I feel is a "good" day - I still think I'm the old Caryn, the doer, the perfectionist, let's bake 10 dozen cookies, do 5 hours of paperwork in the home office etc. - then the immune systems says "hey kiddo - slow down - you need to heal".

    Ilene - hope your son is okay and all the tests come back showing NOTHING.

    Mizsissy - Good luck with your sewing project and the laptop - Oy!!

    T4T - I hope Tae is feeling better.

    So I came home from my first Taxotere today. Skye I asked about soaking fingers in icewater, and the nurse gave me 2 cold packs - one for each hand wrapped in a thin cotton pillowcase to hold during the treatment. They checked me every 15 minutes - temp. and BP. I got out at 1:00 p.m. so far feel okay - when did you all start with the bone/joint pain, muscle twitches, any other S/Es? So far I feel okay... is this the calm before the storm?

    hugs to all and good night, or good morning to those reading this on Friday...
    Caya
  • mer1957
    mer1957 Member Posts: 534
    edited March 2007

    Jan, I'm a small/medium, size 10. Thanks for the offer.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2007

    Mary - I sent you a private message with my email address.

  • Lynn12
    Lynn12 Member Posts: 1,008
    edited March 2007
    Jan, Happy Birthday! Hope you had a nice little party at your infusion.

    Caya, I usually get the stronger muscle twitches the same night I get the Taxotere, but I don't think that started until my 2nd or 3rd infusion. They are contant now that I've had 4. I get bone/joint pain but not until around day 3 and mine if very mild, I don't even take anything for it.

    Tae, hope you are feeling better, you've really had a rough time!

    Mizsissy, hope our sewing project is a success and your laptop is feeling better.

    Nancy, good luck with your Taxol today.

    Have a nice day ladies!
  • Dar1
    Dar1 Member Posts: 146
    edited March 2007
    Brenda, I'm sorry you are having these ins. woes - there must be a way around this! You need the Herceptin.
    Mary, I wore nothing (under my shirt!) home from my surgery. I had a mast. and didn't wear a bra for about a month. I wore a very soft sports bra and when I felt a bit healed, I put some quilt batting in it to make a very lop-sided boob! I wish I had heard of these post-surgery camisoles, they are very comfortable. Good luck with your surgery.
    We do have a breast MRI machine in Calgary - a friend of mine has had several. The doc. here said I would just get yearly mammograms on my remaining breast. I'm not sure I'm happy with that. I want to talk to the radiologist.
    Lynn I understand what you mean about dr. appts. I'm sick of them - I guess because they remind me of the cancer, even though I feel well. I spoke to a friend at work last night - she had bc 9 years ago and started having a lot of pain in her neck/back/arm. She has a congenital defect of her right arm and must use her left almost all the time - her right is quite a bit smaller. That is also the side she had her lumpectomy and aux. dis. on. Anyway, she said how scared she had been that it was the cancer come back in her spine. It isn't, it's just age related degeneration and nerve damage, and her over-use of the arm. That's what being a survivor is, I guess, we're HAPPY when it's JUST spinal degeneration, even if it hurts like hell and has us off work for 3 months!
    I picked up the Tamoxifen from the hospital pharmacy yesterday. The weirdest precaution is - no grapefruit, ever! I asked the pharmicist about it and she said there is an enzyme in grapefruit that would cause me to over-absorb the medication, so not to eat grapefruit, or grapefruit juice as long as I'm taking it. I don't like grapefruit anyway, but I was surprised. She said all other citrus fruits were OK.
    Hope all are having a good day - we are nearing the end of this trip!
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2007
    Rita - good luck with Chemo today

    Nandy - good luck on Monday

    Thanks to all for the birthday wishes. This stinks - but I am looking forward to celebrating with friends in the chemo room. I'll let you know how that goes. I dread not seeing my girls for the next 2 days while they are at my moms.
  • Lynn12
    Lynn12 Member Posts: 1,008
    edited March 2007
    Quote:


    I picked up the Tamoxifen from the hospital pharmacy yesterday. The weirdest precaution is - no grapefruit, ever! I asked the pharmicist about it and she said there is an enzyme in grapefruit that would cause me to over-absorb the medication, so not to eat grapefruit, or grapefruit juice as long as I'm taking it. I don't like grapefruit anyway, but I was surprised. She said all other citrus fruits were OK.





    Holy take away my favorite fruit batman! ARGH! I absolutley LOVE grapefruit, especially in the winter. DH said that I should hurry up and down some grapefruits in the next 2 months before I start Tamoxofin.
  • Amera
    Amera Member Posts: 452
    edited March 2007
    Have a great weekend everyone! We are headed to New Hampshire. The kids and DH will be skiing and I will be getting a massage and hitting the outlets. I am so looking forward to getting out of town. I figure I can be tired anywhere. Might as well have a nice, mountain view while I rest.

    Hope everyone is feeling well...or at least better.
  • NOLONGERREADINGORPOSTING
    NOLONGERREADINGORPOSTING Member Posts: 778
    edited March 2007
    Good Morning Ladies,

    I just took a quick skim over the past few pages...you gals have been busy posting. Basically it seems like you all are doing sort of OK, so that's good. I've been so busy lately I hardly have time to catch my breath. Got my project mostly done, but found out I've got another deadline...we are having are meeting with our taxman and I have a big job to do. Somehow I've got to make that laptop work and figure out how much money I spent on my defunct art business last spring before Tuesday, and appointments every single one of those days...

    I'm getting over chemo and I wish I had time to enjoy it more. I can't remember if I let yall know that I saw the urologist, my lab tests came back negative and I am free of infection!!!!!! I'm also feel a LOT better. I am running or biking every day, and that has done more to make me feel normal than anything. I have my head back too. And the spring weather helps too!!!

    NIOXIN. I ordered my "kit" on line...the men's kit and it arrived but I haven't had time to figure it out properly. There were three bottles, a shampoo, which is kind of a joke. A bottle of head cleaner (I didn't know my head was dirty!), and then a bottle of the real stuff. I just read the directions quickly and it says it may make your scalp itchy. So has anyone else tried this? Is it safe? Does it work?

    I also am taking biotin pills. I guess I need to get going on this, because I can feel something growing on my head, but it doesn't look like much. The hairs are colorless and almost invisible and much too widely spaced...looks much more like duck fuzz than human hair.

    I am really missing my hair now....!!!! It's getting hotter and I don't like having anything on my head. I thought I was done with hot flashes but they are coming back!!!

    Mizsissy
  • NOLONGERREADINGORPOSTING
    NOLONGERREADINGORPOSTING Member Posts: 778
    edited March 2007
    On the subject of HOT FLASHES, I've been through menopause and my onc is thinking of putting me on Tamoxifen anyway, because I am concerned about all the SEs with Arimidex--thinning hair, loss of libido, but most all the bone problems. I have been trying to comfort myself with the idea that Tamo might have some gentle HRT-type effects since it is a mild estrogen. Anybody know anything about this?

    ALSO--now I can ask you. Of those of you who are doing taxotere and have also done AC, which was worse? Maybe that isn't a fair question, because you are on your second chemo without recovering from the first.

    FINALLY...now that I've gone through chemo and am recovering I am wondering if I did enough. I had a binodal tumor or two tumors; one was just about 2 cm (which puts me between Stage I and Stage II), and one was "invisible" and less than .5 cm, but identical histologically to the first. I had clear nodes, and my oncotype score came back at 36, which put me in the High Risk range. My oncologist has never really discussed the pros and cons of different chemo therapies or even offered anything more to me than the 4 session regimen. He didn't even discuss my change from AC to TC (that went through the good nurse). My chance of recurrence, according to the test was 25%, which is a lot. He did say chemo would cut that roughly in half. I was very strongly ER positive, HER negative, PR negligible...I do not want a recurrence. If I do get a recurrence, it will be aggressive. Any ideas on what I should be doing (other than changing oncologists, which unfortunately doesn't seem to be an option)???!!!!

    Perhaps I should have done more chemo, but with the shape my body was in, I don't think I could have. The urologist told me my entire UT tract is damaged right now and needs to heal, but I am wondering if I should consider another round after RADS?

    Mizsissy
  • skyedivine
    skyedivine Member Posts: 839
    edited March 2007
    Hi Ladies,
    I'm way behind, but just a couple of little things. Lynn and others losing taste buds on Taxotere, that must be another difference between Taxotere and Taxol because I'm getting my taste buds back on Taxol, can even eat chocolate again and all my teas taste good. Tae, I'm with you on the bone pain although session two has been better than round 1 that way. I had to drive myself to the hospital yesterday for a MUGA scan before starting Herceptin and it was all I could do to get through it, get back home and crawl back in bed. All the women on TV lately saying how they can work all through chemo are giving me an inferiority complex, they must be much stronger than I am or more fit or something.
    I have one bill of $4800 the insurers are refusing to pay so we are having a go-round on it. They claim it wasn't preapproved.
    On the silk scarves, the TLC catalog and other online places sell elastic gripper headbands which help, and also cotton scarf liners that fit with elastic on the back of your neck so the scarves stay right in place on them. The scarf liner adds fullness too.
    Happy birthday Jan, and trust me, I would so prefer a happy, celebrating bunch of friendly women in the chemo room to a very sick elderly lady with a leaky ostomy bag. Go for it and have some fun! - Skye
  • skyedivine
    skyedivine Member Posts: 839
    edited March 2007
    Quote:ALSO--now I can ask you. Of those of you who are doing taxotere and have also done AC, which was worse? Maybe that isn't a fair question, because you are on your second chemo without recovering from the first.
    Mizsissy, AC was worse than Taxol, which I think is similar to Taxotere. It has been four weeks since my last AC, and I finally have lost the metal mouth, my eyes stopped tearing, my nose stopped bleeding, and my sweat has stopped smelling like chemicals. The bone pain is no picnic and I am fatigued, but I feel better the second week of each treatment than I did the second week of each AC round. My hair is no longer falling out, either. In my book, AC is still the red devil. - Skye
  • Lynn12
    Lynn12 Member Posts: 1,008
    edited March 2007
    Mizsissy,

    I've read other women having the same feeling you have about not doing enough. Do not downplay the ht therapy. Tamoxofin and the AI's save many many women from recurrence or mets. The Onc at Dana Farber said that he would chose HT over chemo if he had to, that's how strong he felt about the benefits of HT. (although I'm premenopausal, so that might have been part of his reasoning) I am strongly ER+ and asked my Onc how soon after chemo I'll go on Tamox. He said about 3 - 4 weeks. I don't want to go unprotected for very long.
  • sharon56
    sharon56 Member Posts: 220
    edited March 2007
    Wow alot of posts we are a busy bunch .
    Caya : Hope you are doing ok today , my pains started about 4 days after my treatment but it was not too bad tylenol helped , my nails are ok i think it depends on each individual on the SE hopefully you will not have anyting real bad .
    I do know that the Tax is easier than the FEC , but just because i was not "sick " did not mean that i was real tired ..... body tired .... and I also wonder how some go back to work and do chemo ....me no way i need the time to heal ... maybe its my age and the fact i am on the menopause track too being 50 with both ... rather be at home . My job way too stressful .
    As for all your insurance woes down in the US , I have mine with our companies insurance to much paperwork and follow up . Now I may have to pay back our gov UI insurance as the long term for work overlapped 3 weeks . Waiting for a letter in the mail for our dear gov. I am not in a hurry to get that !
  • NOLONGERREADINGORPOSTING
    NOLONGERREADINGORPOSTING Member Posts: 778
    edited March 2007

    Skye, I've been told that taxotere is a much harsher chemo than taxol, that is why you get it only once every two or three weeks, not each week. For what that's worth.

  • Rebecca
    Rebecca Member Posts: 971
    edited March 2007
    OH MY GOSH!!! I can not face life without my grapefruit! Just being told that I can not have it makes me want it even more! Yikes. Well, at least, like everything else it is temporary because you do not stay on Tamoxifen forever.

    Anyway, I am just back from my consult with a radiation onc, and I was told (as I rather expected that I would be) that I should go ahead with 5 1/2 weeks of daily rads. Blech. I am going to be getting started in the middle of May, three weeks after my last chemo. I am more than a little bummed about it, but on the bright side, during our discussion, this doctor used a wonderful word that I have not yet heard fall from the list of any of the multitudes of doctors that have now seem me without my shirt on and it was....CURE RATE. Wow, it makes the (metaphorical) hair stand up on the back of my neck just to type it. He said that there are some large studies that were done in Canada and Europe that appeared to show that young women with moderate tumors and few positve nodes showed a significant increase in cure rate when rads were used in conjunction with adjuvant chemo. It was not a hard sell for me from that point. He cautioned that this result may not hold true in the states because of differences in surgical techniques etc, but that there is a study underway right now to see if it does....results to follow shortly. In any case, I am willing to take my chances particularly since I think I would be very upset should the results of the domestic study come back replicating the other results.

    In other news, I had a great thing happen today that I think only you, my BC sisters would understand... I ate something delicious today!!!!!! vegtable panini sandwich...and I actually tasted something that was not gross or bland. I think I cut my tongue on the bread, but it was worth it. ahhhhhh I think I am going to go back to the place where I got if for lunch tomorrow

    and...(as if I wasn't longwinded enough) I was very distressed to read your post Brenda. This is so incredibly frustrating, but I think (if it matters) I understand now what is going on. Your major medical is not covering your drugs, they are being covered by a separate prescrption plan, and whereever it is that your onc is getting his drugs may be an out-of-network pharmacy, and thus the out-of-network rules are kicking in for you. When I was setting up my treatment plan with my onc, we discussed this contingency, and it was agreed that I would obtain the drugs on my own (and be responsible for them) and then bring them with me to my chemotherapy sessions for mixing and administration. In my case I did not have to do that, but maybe you can work something like that out for yourself. On the other hand the words of the billing woman that you related in your post make me want to vomit. That is absolutely inexcusable, particularly given your medical situation. Profit is not at issue here, your life is, and maybe she did not take the hippocratic oath, but your onc did so I am sure that if you stay away from the billing dept and talk to the medical staff you can work it out. I still think that you should double check with your insurance company and make sure that they are allowed to balance bill you...the lady in the billing dept (I think I have already adequately expressed my opinion of her) may just be saying that to you, when in fact it is not true. Keep us posted.

    Amera have fun this weekend!
    Those of you still aching and feeling yuck from infusions, feel better.


    ok, I think that is enough for now. busy morning. I think I may be stuck in the house for the duration because my blood counts came in and they were absolutely awful (WBC 1.8 and platlets 65). Yuck. hope I can go to the gymnastics meet this weekend! hope you are all having a great day!
  • viddie
    viddie Member Posts: 547
    edited March 2007
    Hi,
    Neulasta treatment today after my last A/C yesterday. Went for neulasta shot today. Now pretty tired.
    Jan
    Happy Birthday!
    Lynn,
    I have been getting A/C every shots three weeks. After that I will get taxol/herceprin in three weeks for twelve consecutive weeks. I also need a muga test sometime betrween A/C and taxol. I enjoy my 3rd week. It is the only week that I actually feel great. When I asked my oncologist if 3rd week would make a difference in cell growth return she told me that it didn't. Perhaps she wants you to rest your body before she gives you your next round of drugs.
    Caya, I am starting my taxol/herceptin treatments on April 19 for 12 consecutive weeks.
    Rebecca, Sorry your counts are so low. Do they give you Neulasta?
    Amera, Have fun this weekend.You deserve it!!!

    Viddie (Paula)
  • Rebecca
    Rebecca Member Posts: 971
    edited March 2007
    Hiya Viddie, Congrats on your last AC! That must be such a load off. To answer your question, yes indeed I get neulasta...that is why I am so freaked by my counts. I endured the awful bonepain and fog from that blasted shot and I have no immune system anyway? sheesh. Life is unfair sometimes
  • Rebecca
    Rebecca Member Posts: 971
    edited March 2007
    Oh, and remember that postal worker I posted about a week or two ago that lost his wife to breast cancer? Well, I had to mail a parcel this morning, and he was there. He greeted me and we chatted. Before I left, he said "wait, I have something for you!" He pulls out a little card from under his desk. It was one of those wallet cards with inspirational sayings on it. He told me that someone gave it to his wife, and she carried it with her before she died, and that he wanted me to have it now. He took my hand looked me in the eye, smiled and said I KNOW you will be ok.

    awwww snuffle...it was so mushy, but yet so sweet. I told him I would carry it and think of her.
  • Lynn12
    Lynn12 Member Posts: 1,008
    edited March 2007

    Oh Rebecca, I love mushy stories like that. How special! Thanks for sharing!

  • Lynn12
    Lynn12 Member Posts: 1,008
    edited March 2007
    Quote:


    Lynn,
    I have been getting A/C every shots three weeks. After that I will get taxol/herceprin in three weeks for twelve consecutive weeks. I also need a muga test sometime betrween A/C and taxol. I enjoy my 3rd week. It is the only week that I actually feel great. When I asked my oncologist if 3rd week would make a difference in cell growth return she told me that it didn't. Perhaps she wants you to rest your body before she gives you your next round of drugs.




    Viddie,

    I think you might have misunderstood my comment. I have my chemo's 3 weeks apart as well. I was asking my Onc about the time between my last chemo and when he'll start me on Tamoxifin. He answered it would be 3 - 4 weeks. I don't know what/if there are any tests before starting Tamoxifin. Dar, did you have any tests?
  • IowaCindy
    IowaCindy Member Posts: 341
    edited March 2007
    Sending some healing thoughts from Iowa that your beloved will feel better soon!

    Cindy
  • IowaCindy
    IowaCindy Member Posts: 341
    edited March 2007
    Mixsissy,
    My onc just told me this AM when I went in for Taxotere #3 of 4 that she prefers NOT to use Taxol as it has greater risk of neuropathy.So when I experienced tolerance problems with the Taxotere, she opted to reduce the dose rather than switch to Taxol.

    Cindy
  • IowaCindy
    IowaCindy Member Posts: 341
    edited March 2007
    I now have one chemo left - on April 13. I had my 7 of 8 this AM. I talked to the onc about my port, wondering if it would stay in a few months, half a year or more. She said I won't need it after my last chemo and I can have it out anytime after two weeks after my last treatment! Yea!!! Out for summer!!!

    As soon as I came home I called the surgeon to schedule the follow-up appointment that she wanted after chemo. I told her receptionist that I needed to talk about the port removal also. May 1st I can get that scheduled. Makes me do a little happy dance in my chair.

    And I talked to the onc about when will I feel better/stronger/alert after the last treatment? She said that after one month I should notice a difference and after 2 months the tiredness should be gone. Unless I'm one of those who chronically are tired (not me). But she also said that many of her patients tell her they think they're never going to get there and all of a sudden they wake up and it's a good day and they realize normal is returning. She also told me to be physically active, it will help.

    Last thing - I asked her about the B17/Laetrile that my daughter had ordered for me. She said she wouldn't take it, it does nothing.

    I think it's nap time. I didn't sleep too well last night. A little anxious pre-treatment.

    Have a good weekend, everyone!

    Cindy
  • nandy42918
    nandy42918 Member Posts: 37
    edited March 2007

    Greetings everyone ! Does anyone know if there are different strength prescriptions for Ativan. Just noticed mine is 1 mg. Wasn't sure if thats because they are trying to wean me off them since, my last tx is Monday. or if thats what they have always been.I only take one at bedtime and it seems to take longer to fall asleep.--Nandy

  • skyedivine
    skyedivine Member Posts: 839
    edited March 2007
    Hi Mzsissy,
    Well, you could certainly be right that Taxotere is harsher than Taxol. I don't get Taxol every week, though. It's every two weeks like the AC. I read somewhere that Taxotere and Taxol are "sister" drugs. I wonder if regional policies and doctor's personal preferences play a part in who gets what. - Skye
  • mer1957
    mer1957 Member Posts: 534
    edited March 2007

    Thanks - I replied. Happy Birthday to You. May you have a blessed day.

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