April 2015 Chemo Crew... Starting in April? Please join us!

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Littleblue, I messaged you.


    #33: I am grateful for tea.

  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Georgie - I was told that the survival rate is the same for lumpectomy and radiation as with MX. Sometimes, women mentally just want them off, in which case it's an option. But it does not increase survival rate.

    Steph - So glad you're home. My husband came down with an infection in his artificial knee last summer. Had to give him infusions through his PICC line twice a day for 2 months. I was scared at the prospect, but managed just fine after just one visit from the visiting nurse. Actually, it was kind of fun. I sometimes had to administer while on a conference call. If you have no one to help you, you can do it yourself, you just need a little extender to make the PICC line longer. Don't be too down about it. And I think you can do just about anything with the PICC except, perhaps, swim.

    Have a good Sunday, everyone.

  • bluedog
    bluedog Member Posts: 212
    edited July 2015

    Georgie61,

    I'm TN and doing neo-adjuvant chemo. Getting 5 more taxols then scheduled for lumpectomy in sept with rads to follow. My BS provided little guidance re mastectomy vs. lumpectomy decision beyond saying that the risk was the same. It has been kind of surreal. Like so much else about this experience

  • georgie61
    georgie61 Member Posts: 95
    edited July 2015

    Thanks Bluedog - Since we are basically in the same boat. That is the same information I've been getting and I would love to have the easier surgery. Since I can't get hard numbers from my doctors - I've been googling - which could be a huge mistake. I saw the following on a website www.atlantabreastcare.com - which may or may not even be accurate.

    Risk of local recurrence Approximately 5-15% with Lumpectomy and Radiation Approximately 2-5% with Mastectomy

    Overall Survival Rate of Lumpectomy With radiation, same as mastectomy

    So, from what tI think they are saying is there is a higher risk of local recurrence - but it wouldn't affect survival rate - because they could treat it again??

    Did you have a good response on the tumor shrinking from chemo? I know mine has shrunk but they haven't done a follow up MRI yet, so I don't know how much.

    I know, I'm making myself crazy. I wish I could relax and trust that things will be ok - but since I already got so unlucky with this bit of bad luck - ( the out of the blue diagnosis) it's hard to not think my luck may continue this way.

  • georgie61
    georgie61 Member Posts: 95
    edited July 2015

    Ankledolphin - I couldn't agree more about the surgical studies. The only ones I've agreed to are the ones where they can just have access to my records, etc... But when asked to do things that require more procedures than necessary, a possible placebo, or more trips ( we live 220 miles away) I've said no. We need to take care of ourselves first - even though I know we both appreciate the research being done.

  • bluedog
    bluedog Member Posts: 212
    edited July 2015

    Georgie - oh yes, my tumor shrank a lot. From what felt to me like a golf ball to something I can't even feel now. At least the poison is working.

  • georgie61
    georgie61 Member Posts: 95
    edited July 2015

    That is awesome! That is about how mine feels as well. That is a big advantage of having the chemo first - knowing it was working! congrats!!

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited July 2015

    georgie, I am also doing neo-adj chemo prior to surgery. However, I had psychologically made up my mind to have a bmx the second the biopsy results were in. I think my brain is just wired to "go" there and can't wrap itself around any other decision. I have had 4 rounds of A/C, 1 round of taxotere/carboplatin (out of 4) and just had my mid point mri last week. It showed a complete radiological response. I hope you can get your mri soon so that you can feel the same relief that I did. Maybe knowing how your mass responded would help you decide what to do. I agree that it is still very overwhelming knowing that we have these big surgeries looming on the horizon.


  • Vanmama
    Vanmama Member Posts: 103
    edited July 2015

    Really been struggling this week-my CMF side effects cycled through pretty quickly and then I ended up with a double ear infection, throat infection, lost my voice, and a cough from hell. I have been so miserable and last night, I thought I was not going to be able to catch my breath after a few of my coughing spells.

    Today FINALLY I feel like I might survive it! My ears are better, my throat is not as sore, and my cough has loosened somewhat. My MO put me on a Zpack Thursday which seems to be working slowly.

    Today I am bummed because I made a cake at my hubby's request and got it all mixed up and in the oven when I realized I forgot the eggs! Chemo Brain!! I have never done that before!

    What a week

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited July 2015

    Steph, so sorry that you have had to deal with all the extra angst during your treatment. I hope that your antibiotic treatment goes smoothly and that this detour is quickly a thing of the past.

    HI everyone else. I had my first taxotere/Carbo last Monday. Neulasta on body inection went off late Tuesday night. When they say it beeps and flashes...yes...it's loud and noticeable. Really glad we postponed it the time before when it would have gone off on the airplane.

    As for the transition from A/C to T/carb...I am just mentally and physically discouraged. My mouth condition had slowly deteriorated throughout A/C, and it seems like T/carb has shown me that it could get a whole lot worse. I feel as though I have been chemically burned from the inside. My whole ENT area, mouth, esophagus is just perpetually aflame. My inner ears burned and itched so badly yesterday I could barely stand it. Not only are my taste buds toasted, but my salivatory glands are all but shut down. my nose septum burns and feels raw. I can barely swallow, can't talk, can barely manage fluids/smoothies.

    I am assuming that the horrendous bone/whole torso pain I was in was a combo of the taxotere/neulasta. I had thus far avoided the hydrocodon the MO prescribed me for neulasta pain during A/C....but by 9am on Wednesday I could not tolerate the pain any more. After a couple of days of barely managed relief with the hydrocodon, I of course ended up with big time C. So I spent yesterday dealing with the pain of waiting for the lactulose to work. The last 4 days have been a nightmare of pain, pain, and more pain. Today, I am manageable with the body pains, but the mucositis issues are unrelenting.

    It is so frustrating to have done everything I could to prevent the mouth issues only to have them be the greatest source misery. I even choked down the chalky glutamine in plain water hoping for the best results. At this point I am afraid I will not have the strength to "do this" 3 more times.

    Each day, I pray I will awaken with more strength and fewer side effects.




  • bluedog
    bluedog Member Posts: 212
    edited July 2015

    thanks, Georgie. And congrats to you, as well! You, too, Dizz!

  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    Diz park, when I did TC (different C), pain was worst days 3-5, but then improved quickly. You need some very strong heartburn meds because the mucositis can be horrible. I hope you start to feel better soon.

    Van mama, I hope those meds kick in soon. How many more rounds of chemo do you have?

    Georgie, those stats seem right on par with what my BS had told me.

    Littleblue, usually port removal is easier than insertion.

    MO is not there Tuesday, do I see him tomorrow and will therefore have chemo then too. Hoping for good counts so I stay on track... Hopefully by this time tomorrow, I will have 3 left


  • georgie61
    georgie61 Member Posts: 95
    edited July 2015

    Dizzparkmom,

    I will let you know on the MRI results when I get them - but I sort of like your approach BMX even with good response and shrinkage. Will you be getting Rads after surgery? I was told I will have 6 weeks of Rads - 5x per week - so I will have to find a place to stay by the hospital. Too far to drive every day. I sure appreciate sharing your story and reasons - this is all helping.

  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Georgie, is there a Ronald McDonald house near the hospital you'll get your rads at?  I hear they're wonderful. 

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    kbee, hope you get feeling better and can stay on schedule!

    Dizz, I got nothin, but I'm so sorry you have the bad mouth and GI sores..I had them too on AC. It's just miserable. Sending you strength!

    Ksusan, I heart your treadmill...and your cat

  • georgie61
    georgie61 Member Posts: 95
    edited July 2015

    They do have a Ronald McDonald house, but its only for families with a sick child.

  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    Thank goodness I checked my patient portal to see when and where they scheduled me for last chemo - they have switched my day to Tuesday the 28th! I may have mentioned that they were talking about moving me to another center, and so I had my DH schedule the day off on the 27th because I could not/would not ask for rides to the new center - too inconvenient. So, good news is that it's not at the new center, but bad news that they switched the day. If I hadn't checked, I wouldn't have known until they called with confirmation later next week - maybe not until even Saturday.


  • GingerChi
    GingerChi Member Posts: 252
    edited July 2015

    Georgie, have you checked out the American Cancer Society Lodging Program? http://www.cancer.org/treatment/supportprogramsservices/patientlodging/index

    They have lodges near some hospitals, or can get reduced rates at hotels for you. Here's the number to call: 1-800-227-2345.


  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Good luck everyone going to the chair today!

  • Alibeths
    Alibeths Member Posts: 656
    edited July 2015

    getting fluids. This has been the worst one for me. I'm DONE!!!!

  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    Yay, Alibeths! DONE!

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited July 2015

    Giant Congrats Allibeths!!!!!!!

  • ThePrincess
    ThePrincess Member Posts: 424
    edited July 2015

    Oh Alibeths! YAY!!!

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited July 2015

    woohoo, Alibeths!

    Thinking of all of you in one big swoop. Oncologists are fooling around with my meds to see if they can make me more comfortable; thankful for considerate care.

    I am turning 44 on Saturday ... I think I want to celebrate this birthday well.

    Lynne, let's plan our lunch. We'll toast to summer birthdays and this fabulous group.

    Littleblue: you are too funny!! Had me in stitches with the skateboarder stories. Love you back, rockstar!

    Kbeee - I was thinking about your son today. How is he? Broken leg?

    Dizzparkmom - sending you strength for all those SE. Really sucks.

    Stephmoen - not a day goes by that I don't think about you and your family. Hang in there, friend.

    Vanmama - heal well from the SE

    I still have chemo brain and started writing down lists. Depression is lifting since I have been off tamoxifen. Still struggling with Anal fissure which healed and then returned. Ouch. I am certainly not inclined to moon people despite being inspired by our talented Littleblue

  • bluedog
    bluedog Member Posts: 212
    edited July 2015

    Dizz, my post crossed with yours last night. I was congratulating you on your "complete radiologic response," NOT on your horrible SEs. So sorry you are in such pain. I hope you get some relief soon.

    Alibeths, congratulations on being done. Woot!

    Saw the dermatologist today for a chemo rash spot that turned scaley and painful. They did a biopsy. Guess there's no reason I couldn't have skin cancer on top of BC.

  • ankledolphin
    ankledolphin Member Posts: 99
    edited July 2015

    holy cow...when my MO said on Thursday on my last chemo day, things will get better after this....i was hoping he wasn't kidding....my SE this time are one of the worst ever. Thank goodness it should be the last one, and it will get better since it will just be herceptin after...i think that is what he was saying.

    I'm sharing with everyone My fortune cookie from last week since we all need fortunes like these:

    Nothing is capable of holding you back. :)


  • Scarlett152
    Scarlett152 Member Posts: 175
    edited July 2015

    Anyone have numb lips on TC? Just started yesterday 10 days post last TC.

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited July 2015

    bluedog- had derm biopsy a spot on 7/9 too. I had bcc skin cancer on face in 2010. I hope we both have good reports that we are worried about nothing.

    Scarlett, do you have any other mouth issues. My lips and tongue are a bit numbish...but my entire mouth is a trainwreck, so....just assuming it's all part of the same delightful package.


  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    Scarlett, no numb lips, but very dry - and not quite chapped, but just aware they are dry.

    Today (started yesterday) I am nauseated. I took a couple of tums. I'm thinking it's something I ate vs. SE, but never sure with the shit sandwich. If you were going to take something when already nauseated, would it be a zofran? Dexamethasone (steroid)? Or some MM?

    Lynne

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited July 2015

    Lynne, do you have Ativan? That helps with nausea too.

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