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Starting chemo July 2014

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Comments

  • nancy2581
    nancy2581 Member Posts: 407

    knmtwins we will be routing for you. When does chemo start? I did have thin hair before all of this, but I had a lot of it so it was ok. Now I don't have a lot of it. I have splurged on products that make your hair appear thicker. They work somewhat. Wow can't believe your hair is down to your waist. I have never been that fortunate. Anyway, I do hope chemo goes easily for you because you certainly don't deserve to have to deal with this crap again. We are here for you. Hugs

    Nancy

  • knmtwins
    knmtwins Member Posts: 437

    Chemo starts Wed. Woo Hoo. My stupid prescription drug plan has denied all of the GERD drugs that are in my formulary, so I have to call and fight them, like who needs that. I'm going shopping for all those things you need, like Biotene toothpaste, saline nasal spray, a lady on Feb 2019 chemo sisters is a pharmacist and she says, canned peaches make the 'metal' taste go away, so you know I'm getting them too. As to crap... yep, crap, crap, crap. Oh, this time I'm on 5 steroid pills the night before and the day of and then it is in the pre-cocktail. Seems if you stop and start Carboplatin you have an increased chance of allergic reaction. YIKES.

    Thank you all my July Chemo sisters!!! I think I need to pm Slappy-Squirrel and ask for a chemo beenie. I wonder if she knits them in something that wouldn't be too hot? I never got one last time. I just sent her a pm

  • elainetherese
    elainetherese Member Posts: 1,624

    Wow, kmntwins! That's a lot of steroid pills. If that were me, I'd be getting an Ambien prescription already. Ugh about your insurance. You shouldn't have to fight for basic medications.

    Man, I do remember the bad-tasting food on Taxol. Again, there are those who suck on ice chips during chemo, but I wasn't one of them. As a result, I lost 10 lbs. on Taxol (which I quickly gained back).

    I'll be thinking of you on Wednesday!

  • knmtwins
    knmtwins Member Posts: 437

    Elaine Therese - did you do Taxol weekly, every other week, or every three weeks. I'm every 3 weeks and freaking out about how much that will be. How many steroids did you have to take as at home pre prep?

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    I did Taxol weekly. I took two steroid pills the night before and then two steroid pills the morning of the transfusion. So, that's four, which really isn't that much fewer than five, so I shouldn't be so startled at five! I guess I was thinking that five at once would be a lot.

    My MO did give me meds for sleep aids, so there's that. I just really hate tossing and turning in bed, unable to sleep.

  • knmtwins
    knmtwins Member Posts: 437

    I did 5 tonight and 5 tomorrow morning

  • elainetherese
    elainetherese Member Posts: 1,624

    Good luck with your first transfusion, kmntwins! Hoping you suffer minimal side effects.

  • Slappy-Squirrel
    Slappy-Squirrel Member Posts: 199

    Praying for you kmntwins. Hang in there! Shirley

  • nancy2581
    nancy2581 Member Posts: 407

    Interesting. I did not take any steroid pills during taxol. I'm sure it was in my cocktail infusion, but never took the pills. Guess everyone is different. Did you have chemo kmntwins? How did it go?

    Nancy

  • knmtwins
    knmtwins Member Posts: 437

    Poo, I posted but the site ate it, at least I think it did.

    First infusion with Taxol on Wed, had anaphylactic reaction to less than 1 tsp (5cc's). I can no longer have Taxol or Taxotere, it was so severe. I will do Abraxane, which is Taxol but with Albunim to coat it so you don't react. Went back today for '1st infusion'. Cycle 1, week 1, Abraxane and 1/2 carbo, week 2 Abraxane and 1.2 carbo, week 3 off, Cycle 2 - 6 repeat. Problems, I've never done this, so we need to get through 1st week to see what my symptoms will be, I haven't had a bm in 2 days, and since I'm only 3 weeks post total hysterectomy, my vaginal cuff isn't healed enough for me to push hard, and certainly not enough for me to strain. TMI, sorry I know.

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    Glad to hear you made it through the Abraxane/Carboplatin combo! Sorry to hear about your lack of stools; that can get annoying, but not as annoying as unexpected diarrhea. Are you taking any stool softeners or anything?

    Take it easy! That reaction to Taxol must have been SCARY. ((Hugs))

  • Slappy-Squirrel
    Slappy-Squirrel Member Posts: 199

    knmtwins,

    I’ve got hats ready to go. LMK where to send them. Hope you’re feeling ok after chemo.

    S

  • puffin2014
    puffin2014 Member Posts: 915

    Realized this afternoon I hadn't checked here for awhile and was surprised to see all the messages. Sorry you have to do chemo again kmntwins, hope your body likes this new regimen better. Get out the prune juice.

  • nancy2581
    nancy2581 Member Posts: 407

    How are you doing kmntwins? I've been thinking of you. Hope you are doing ok. Hugs

    Nancy

  • knmtwins
    knmtwins Member Posts: 437

    Slappy -thanks so much. I'll message you my address.

  • knmtwins
    knmtwins Member Posts: 437

    Elaine - thanks, the problem I have with potty issues, is due to my 'vaginal cuff' not being fully healed, I'm not allowed to push hard, as it could open that wound and I could hemerage. I mean really, you need everything in working order for chemo. Yes, I'm on 3 stool softeners a day.

    Puffin - I know, right, how crazy is a second primary and chemo again. But I will say, my daughter became more interested in science after the last and now wants to work on the CRISPR project when she gets her Masters - so 9 years from now. https://research.cornell.edu/news-features/genetic-editing-crispr

    Going in for 2nd week of Abraxane and Carbo today. Fearful of Friday night - Sunday night. Last week I passed out in the bathroom on Sat. Fortunately, I had an idea it was coming so leaned against the door jam and just slid down it to the floor. Not sure why, I hadn't thrown up or had D, so I wasn't dehydrated. That was my BAD day, but by Monday night, I could stop taking nausea meds and on Tuesday drove myself to the follow-up for my port and picked all 3 kids up from school at different times.

    Nancy - keep those hugs coming

    July 2014 Sisters - I love you and get so much comfort and knowledge from you!

  • elainetherese
    elainetherese Member Posts: 1,624

    Oh kmntwins.

    I was so sorry to read about that passing out bit. I'm praying that your Abraxane/Carbo infusion goes better this cycle. My sister-in-law was just diagnosed with endometrial cancer, and she just had her hysterectomy. She should be getting her pathology back this week. I don't think it's serous, but we'll find out, I guess.

    Take it easy, Friday--Sunday. I know your DH works crazy hours, but hopefully he'll be able to help over the weekend a bit. ((Hugs))

  • nancy2581
    nancy2581 Member Posts: 407

    kmntwins I'm sorry you passed out. Chemo sure does take a toll on us. I really hope this infusion goes better for you. And yep many many hugs coming your way. We are all here for you.

    Nancy


  • knmtwins
    knmtwins Member Posts: 437

    Elaine so sorry for the family news. Did she get a biopsy first? What was the result? That was how I found out I had Serous. There are a few others that require chemo too, but most, if caught early, the hysterectomy fixes. I'll pray she has one of the easy ones. Tell her to go to hystersisters.com and get into the topic about this weeks hysterectomies, she can follow other women's recoveries. If she ever wants to talk/email I'm here for her. BTW, yes she will be able to laugh, cough and sneeze again without awful pain. I think it is between week 3 and 4, as I am there now.

    Passing out, my oncologist thinks I might have had too much liquid and too little salt. So, I'll be upping the salt game. Are there any MSG free oodles of noodles?

    Everyone - thanks for your thoughts and prayers, I feel them!!! Maryland is a medical marajuana state, so I will take my first toke in almost 40 years around 2pm, to try to stay in front of the nausea. That was an interesting conversation, from the don't use drugs mom, of 2 15 year olds and an 11 year old.

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    Cathy did get a biopsy, but DH was vague about what it showed. (It's his sister.) I believe it isn't serous because after her hysterectomy, they're just talking radiation. The lesion was 4 cm., but the nodes were all clear.

    Good luck with the medical marijuana! I hope it works for the nausea and other side-effects. Yeah, I can imagine that conversation with your kids, LOL.

    ((Hugs))

  • knmtwins
    knmtwins Member Posts: 437

    So, this time I got an extended release anti nausea shot and did some medical cannabis, it was night and day. OK, I wasn't running around and the DON'T COOK IN THE HOUSE rule was still there, but so much better. Sappy-Squirrel was kind enough to send me two beenies. Woo hoo, I have them now too. I was to embarrassed to ask last time, not anymore, you guys are my family now.

    As to family, please keep our lovely PinkNinja in your prayers. She is having a rough go of it at the moment and is in the hospital. Her electrolytes are off and they are trying to balance them, brain swelling from the old tumors and new ones.

    A freiend sent me a very nice check and said do something for you, so we are going to the beach this weekend. It won't be warm enough to go in the water, but just to listen to the waves should be lovely. The weather forecast is not encouraging, so odd, since we are 3 hours away, and our weekend forecast looks lovely.

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins!

    So glad to hear that this round went better! Enjoy your visit to the beach; I love visiting lakes and beaches whenever.

    Thanks for the info on pinkninja (not on Facebook myself). I definitely will remember her in my prayers. Sigh. Cancer sucks.

  • nancy2581
    nancy2581 Member Posts: 407

    Glad to hear this chemo went pretty well kmntwins. How nice of your friend to send you a check to do something nice. Beach sounds relaxing.

    I saw the post from Rachel (pink ninja). Yeah she's having a tough time right now. I think about her often. She has such a good attitude. I don't know if I would if I were in that situation.

    Hoping you continue to do well and this will all be over soon.

    Nancy


  • nancy2581
    nancy2581 Member Posts: 407

    kmntwins how are you doing? Have been thinking about you.

    Nanc

  • knmtwins
    knmtwins Member Posts: 437

    Nancy, thanks for asking. The drama continues, for cycle 3 week 1, I had a reaction to carboplatin, so no more platinum based drugs for me. My MO is checking with collegues at Johns Hopkins Rare Gynocological Cancers and Memorial Sloan Kettering, to see what is next. I did cycle 3, week 2, yesterday and just had the Abraxane. At my appointment next Friday, that will be one of the major topics to discuss.

    I also have found out that our new cancer center, part of the MD Anderson umbrella, but to me, still my dinky regional hospital's oncology center, as the doctors are all the same, well they got all the newest cutting edge stuff to do vaginal brachytherapy, so I need to call and make my appointment to 'chat' with them about that, but I won't do it till I'm done with chemo at the end of July, so I keep pushing it back.

    Kay

  • elainetherese
    elainetherese Member Posts: 1,624

    OY, kmntwins! Sorry to hear about your reaction to Carboplatin. I guess these intolerances for certain chemos can crop up at any time, as you made it through TCHP.

    I'm curious about what your MO might suggest; hopefully, there will be some good options for you.

    Have your potty issues cleared up? I hope so; that would be one less thing to worry about.

    Thanks so much for the update! Like Nancy, I've been thinking of you.

  • nancy2581
    nancy2581 Member Posts: 407

    HI Kay - thanks for the update. I'm sorry the carboplatin is causing problems. I'm sure your MO has some tricks up her sleeve. Interesting that your oncology center is associated with MD Anderson as mine is too now. Are they putting their name everywhere? Nothing has changed at our oncology center either. Despite the chemo I hope things are going well for you. Keep us updated!


    Nancy

  • elainetherese
    elainetherese Member Posts: 1,624

    kmntwins,

    How's the chemo going? I hope you're still hanging in there.

  • puffin2014
    puffin2014 Member Posts: 915

    Saw my oncologist this afternoon. Originally she'd said that the most current research showed that since I'd had chemo I should stay on the arimidex for another 5 years, and only ordered the Breast Cancer Index test when I insisted. It came back showing that the arimidex would have little effect on preventing a reoccurence for me in the next 5 years. Today she told me that because of those test results I can stop taking my arimidex the end of October, the end of my 5 years. I'm so glad I insisted on the test.

  • elainetherese
    elainetherese Member Posts: 1,624

    Yay, Puffin!!! How awesome for you! I'm glad you pushed for the BCI test, too. October can't come fast enough, right?

    Unfortunately, I wasn't node negative, and my cancer was HER2+, so the BCI test isn't recommended for me. My MO has told me that I'm on the 10-year plan. Sigh.

    Oh well. I just had my biennial dexa scan, and I've graduated from full-blown osteoporosis to osteopenic. Thanks, Prolia!