Starting Chemo in April 2014

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  • Ddkath70
    Ddkath70 Member Posts: 129
    edited August 2014

    hey there BC sisters, wonder if anyone is dealing with swollen ankles. I was feeling like my legs  were tight And heavy so my husband gave me a massage. Next thing I know my feet and ankles are swollen and my legs are fine. My MO seems to think that it's due to the steroids and water retention, even my face is puffy. She gave me a water pill, seems to be helping. Just wondering if anyone else is experiencing this. 

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  • lilyrose53
    lilyrose53 Member Posts: 216
    edited August 2014

    Ddkath,  I have had the same issue for awhile.  It started with the Taxol.  I am on Lasix and also needing to wear compression stockings.  My face is puffy too.  My MO tells me this should disappear once I finish chemo.

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  • Swissmiss
    Swissmiss Member Posts: 111
    edited August 2014

    For those who have finished chemo...have you been in contact with your MO?  I am four and a half weeks PFC, and have not heard from my MO at all.  I started radiation a week and a half ago, and still have several weeks to go.  But wouldn't  my MO wonder how I'm doing since my last chemo?  Or want to set up an appointment for post radiation plans?  I'll probably be put on tamoxifen after radiation, but I'm wondering why not now?  I know I must be over thinking this, but from the beginning of my treatment I've felt sort of lost in the shuffle, like I'm always being forgotten.  

    I have an appointment with my breast surgeon tomorrow (finally!) to have my port removed in her office, and to go over my mammogram results.  Wish me luck!

    Wishing you all a great day!

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    I saw my onco one week ago.  When I had a question I could not reach her.  It's weird.

    Now I'm getting nervous about skipping the sixth infusion and it does feel odd, it's as though she's done with me.  I'm not supposed to see her for three months.

    I had a talk with the social worker.  She told me it's important to advocate for yourself.  But then she contacted my onco.  It was the only way I could reach her!

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  • MomMom
    MomMom Member Posts: 523
    edited August 2014


    Swissmiss,  I agree that you should have had an appointment with your MO by now.  She should certainly be checking up on you to see how you're doing post chemo and suggest a date for beginning rads.  She should answer any questions you have on what's next regarding other treatments and when, and when you should next see her.  I would call and make an appointment and come to the visit with a list of questions/concerns.  BTW, my MO suggested starting rads 3 wks PFC, but my RO was in charge of that & it was only 2 weeks, which made me very happy as I was ready. 

    I think I posted here that my in office "Deportation" as my breast surgeon referred to it was quite easy and I've had no issues with it 6 days later.  Steri strips have almost fallen off.  I'm sure you will have a good experience too.

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  • SharonDe
    SharonDe Member Posts: 222
    edited August 2014

    Swissmiss / Trina - My MO wanted a follow-up appointment at one month PFC.  Because we were leaving the state, we agreed to meet at 3 months PFC.  I knew I could call if I had questions (as I mentioned before, she was always on the phone with someone else during my visits, so I wouldn't hesitate to call if I had a question).

    I guess I should make a 6 month follow up visit with my surgeon (although I can't recall if he said 6 months or a year).  

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  • Kazzy115
    Kazzy115 Member Posts: 122
    edited August 2014

    Swissmiss - I saw my MO just before my final chemo tx.  She indicated she didn't need to see me until after radiation was completed, presumably for tamoxifen script.

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  • mmtagirl
    mmtagirl Member Posts: 509
    edited August 2014

    I was seeing my MO with every third infusion.  Last week when he said the last cycle of three infusions wasn't needed and I could stop after the next two he said he wanted to see me in a month which would be 1 week Pfc and we would start tamoxifen.  He would then see me every 3 months.

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    Why did he say the last infusion was not necessary?

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  • mmtagirl
    mmtagirl Member Posts: 509
    edited August 2014

    Timbuktu, my original treatment was Taxotere and cytoxan. I only did one round of Taxotere because it gave me chemo induced colitis and neutropenia resulting in a 4 day hospital stay.  He then switched me to AC for the remaining 3 rounds and 9-12 x weekly taxol.  He is satisfied that the 9 are enough and I would not get any added benefit from the additional 3 or 1 full cycle.  So, I have two Tuesdays left in the chair.

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  • MommyQ
    MommyQ Member Posts: 117
    edited August 2014

    Timbuktu: Wow, glad you got that misunderstanding cleared up & there is no malignancy, but sorry you had to worry all week!

    linda505: I'm sending positive vibes that your bone scan is clear.

    SharonDe: Thanks! I'm happy to have finished all 6 chemos. Now I just have to get better from this round to close this chapter.

    SwissMiss: I think Tamoxifen can start either same time as or after rads are finished. I have a 3 week PFC followup scheduled with my MO for first week of September just to see how I'm doing. It's worth a call to see if you're supposed to have a follow up visit and also to go ahead and schedule your post-rads visit to get on hormone therapy. Your MO could have forgotten to schedule you when you were there for your last chemo.  Good luck with your port removal (let us know how it goes) and your mammogram tomorrow!

    ************

    So, we had a bit of a fright yesterday. I had my 6th TC chemo on Wednesday. Yesterday, at lunchtime, I made a sandwich and got a drink. I felt lightheaded, was breathing in short shallow breaths, and was sweating profusely as I sat down to the kitchen table. Feeling weak, I put my head down on the table. My husband said I passed out for about 15 seconds. Freaked him out completely since he was holding me and said my eyes were open but I was unresponsive. He yelled to wake me and I finally did. He moved me to the couch where we took my pulse, and it was like 42! Scary!!!

    I guzzled some Gatorage and laid down on the couch to rest, where my pulse went back up to the 60s. I think I was dehydrated because I didn't drink anything all morning (I know, stupid me!).

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  • linda505
    linda505 Member Posts: 847
    edited August 2014

    Hey all - thought I was going to have to wait until next week for results but that were posted on my site that the MO posts my info on and ALL CLEARS - NO METS!!!!!!  woo hoo so relieved - thank you all for all your positive thoughts and prayers!!! 

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    OK   mommy, you just made up my mind.  That's what can happen with the 6th infusion!  Thank God you came back to normal!  How frightening!

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    Woo Hoo is right Linda!  Celebrate!

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  • MommyQ
    MommyQ Member Posts: 117
    edited August 2014

    Yay, Linda! Great news!

    Timbuktu: Thanks. Yep, skip #6! Yikes!

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  • SharonDe
    SharonDe Member Posts: 222
    edited August 2014

    Celebrate, Linda!!!  Great news, and glad you didn't have to wait.

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  • mmtagirl
    mmtagirl Member Posts: 509
    edited August 2014

    Great news Linda!  Go celebrate!

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  • MomMom
    MomMom Member Posts: 523
    edited August 2014


    Linda,  SO happy for you!!!  Go celebrate - Yay!!

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  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited August 2014

    Linda - That is wonderful news!

    MommyQ - Just reading your scary moment made me. cringe.  Rough go.

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  • linda505
    linda505 Member Posts: 847
    edited August 2014

    Thanks all  - so relieved and I got scheduled for my exchange surgery today - will be on Sept 19th!! 

    MommyQ - scary stuff - hope you are feeling ok now!!

    timbuktu - make that decision and don't second guess yourself - you know you are making the best one for you!!

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  • MommyQ
    MommyQ Member Posts: 117
    edited August 2014

    Brigadoon and Linda: Yes, Saturday was very scary. I think I'm better now, thanks. I'm a bit nervous to be home by myself today though.  I just need to be careful, make sure I eat and drink, and take it easy.  I'm also keeping the cell phone with me at all times.

    Linda: I'm jealous that you get your exchange surgery soon. That's great! I can't wait to get these cannonballs out, and I'm sure you probably feel the same way. :)

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    Mommy, have you talked to your dr about what happened?  I couldn't sleep last night so I was doing some research.  One article said that 16% have that reaction to the sixth carboplatan infusion.  And it can happen up to 3 days out.  I'm wondering if antihistamines or some other med could help?

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  • Sunshine36
    Sunshine36 Member Posts: 88
    edited August 2014

    Hey ladies!! Wow I hadn't realized how long ive been away from here, congrats to all those who wrapped up chemo, and good luck to those wrapping up soon!  My final chemo was 7/24 - had some wicked side effects including my the aweful mouth sores that I battled through each round, but now im feeling tons better and my bilateral is on wed (soooo nervous and anxious yet in a wierd way, excited to get it done!). And ive got stubble on my head woot woot!!!!

    Can I ask, for those of you that already had a bilateral,  how many days did you spend in hospital and what did you think was the hardest /worst part??? My dr said average is 2-3 days if things all go well, but just curious about everyone's exoerie

    Xoxo

    Jen

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  • MommyQ
    MommyQ Member Posts: 117
    edited August 2014

    Timbuktu: I haven't told my MO about what happened Saturday. Should I? Thanks for looking online for possible causes, but actually, the "C" in my "TC" treatment is Cytoxan, not Carboplatan. Sorry for the misunderstanding. I took a Claritin Thursday and Friday around 3pm to aid in minimizing muscle pain from my Thursday Neulasta shot. I think my problem was dehydration.

    Jen: Glad to hear you're feeling better post chemo. I was only in the hospital one night after my BMX. The hardest part for me was not being able to lift myself up from bed and lay myself down without help for the first 2 weeks afterwards. It was just painful. Also, the drains were uncomfortable. The surgery scars themselves surprisingly didn't bother me too much. Washing my hair was a pain too.  I had hair half way down my back. Trying to keep my chest area dry while washing that much hair was crazy. Plus, I couldn't raise my arms up that high so my husband or my daughter had to do it! So, take a really good shower/bath before you go in for surgery! :) 

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  • Swissmiss
    Swissmiss Member Posts: 111
    edited August 2014

    I'm so happy for you, Linda!  After all this worry, it's wonderful to see you get good news :)

    Mommyq...oh my goodness, that is scary! Glad you're ok.  With all the sweating I do with my constant hot-flashing, I often feel like I'm dehydrated too.  Your scare is a good reminder to get more fluids in.

    MomMom...I head out in an hour for my "deportation."  Love that term!  Were you sore after?  I'm taking my husband along today, but wondered if driving might be an issue tonight and tomorrow.  Three kids have me on "mom taxi" duty every day :)

    Hope you're all having a good day!

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  • linda505
    linda505 Member Posts: 847
    edited August 2014

    Hey Jen - I had surgery at 3 pm and was out of the hospital by 1 pm the next day.  The hardest part of the BMX was the inability to get myself up and out of bed for the first week or so.  I spent that time in an electric recliner - I rented it from rent-a-center and it was the best thing that I could have done - it gave me the ability to get up and go to the bathroom without help in the middle of the night.  Just remember you can barely use your arms - that is the hard part.  Make sure everything that you need to get to is counter height or lower.   Think of T-rex - that is your arm movement range.  Also hard to open jars, bottle etc as that force is more than you can manage.  My pain was very minimal - really very little pain.  I had more muscle spasms than pain and my PS gave me valium which I used at night for a number of nights to help with the muscle spasms in my chest. I only took pain pills for two days I think.  

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited August 2014

    It's really amazing how little pain there is with a mastectomy.  

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  • Ddkath70
    Ddkath70 Member Posts: 129
    edited August 2014

    great news Linda! Congrats! 

    MommyQ, that is scary! Hydration is so important in our condition. I can tell when I need to drink more. 

    I have my simulation on 8/25, anyone have that yet? And....drum roll please...I get my port out on 8/29! Yay!!

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  • Sunshine36
    Sunshine36 Member Posts: 88
    edited August 2014

    Ddkath that's great news!  Getting port out has to feel so exciting! 

    Thanks girls for helping ease my nerves aboutpain level!!! How was evereveryone's experience with anesthesia?  I had only ever had twilight (during my port placement!) And was fine with that, but jve been warned anesthesia can cause some bad nauseas and sometimes vomiting when you wake up?!?

    My big day is tomorrow and so nervous! I want to believe that after 6 rounds of chemo, this has to be easier, right??!!

    Xoxo jen 

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited August 2014

    In the chair for taxol #11. One more to go in a week then I get to drop the taxol part. I am so excited about next week. I did have to get more magnesium again today but I am almost done. :). Radiation I think is going to be a pill but I will deal with hat one day at a time. 

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