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

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited July 2015

    HI Everyone,

    I have been catching up on all the posts. First, I am sending out big hugs to all of you.

    Kbeee, your dream from some days past had me in tears and then I knew that it was fear talking. Cancer does a number on us!

    Lynne - you wrap those beautiful arms around your family again and again; they are SO lucky to have you. I hope your numbers get better and vacation is fantastic.

    Littleblue - come hell or high water, my friend...here for you! Don't be afraid to get a second or third opinion as it is never too late. My MO#1 said Lupron, my MO#2 disagreed, so I am looking for MO#3 to help me decide on ovarian supression.

    Addie - I have been thinking about getting a FB account and your post might just make me do it. Your hair will come back. Sometimes, I reach for a brush and then remember but something is sprouting on my bald top. My kids also let me know that I have a dent. :)

    Andrea - I love that your friends came out to help with the garden.

    Gingeel - Love your attitude in pushing through chemo and living life!

    Gingerchi - thinking about you and hoping your recovery after the hospital stay is going well.

    Rpayton - I agree with your recommendation of yoga, meditation, etc...it helps keep me in the present moment.

    Ksusan - good luck with radiation

    Stephmoen - hope all your treatments go smoothly

    I missed many of you and I wish you well. I am on tamoxin, fighting through depression, trying to transition back to one day a week at work, sad about one of my closest friends who did not know how to be there for me. And then I look at my two lovely kids who do know how to love me, and my husband, who gazes with worry, and my mother, who just got called in for a second mammo (they think it's a cyst)...and I know that I am loved more that I ever thought I would be. Tomorrow, I booked a hotel in Mystic, CT and got library passes for the aquarium. I will send you all pictures of a beluga whale!!! :) I am determined to find a way to beat the anxiety and depression crap that comes with cancer. And July 3rd is our 16th wedding anniversary! I hope some of you are well enough to enjoy the 4th of July fireworks.


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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    KBee - you can be a fill in for Special K!!!!

    Hey, Katy - YOU'RE DONE WITH CHEMO!!!!!!!!!!!!!!!!!!!!!!!!!

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  • Addie29
    Addie29 Member Posts: 307
    edited July 2015

    positive spirit mystic is lovely. My brother lives close to there so we've been there a couple times. The beluga whale is my favorite:) enjoy and Happy anniversary !

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

    Special K is waaaaaay more knowledgeable and on a wider breadth of topics! I just use some of my "down time" at work to do research, I know MOs have a ton of patients with lots of different types of cancers and with the tons and tons of studied out there, it is nearly impossible to keep up yo date on all. I on the other hand, only have to research breast cancer! I have always been a research geek anyway

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

    Ok I feel better...a jog helped. I dont know what I would do without you all!

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    KB - thanks for the link to that poem - made me smile - so true! I shared it on mylifeline.org page so that my friends and family could read something real.

    Ok, my MO said there was no difference in outcome with 12 weekly or 4 DD Taxol - here we go again with different things we are told. She said the only difference was that weekly Taxol is found to be easier on patients as far as side effects, etc. She actually recommends the weekly Taxol, but the MO that I met with in Boston recommended DD with no hesitation - there were no other options suggested, even though I asked, and I felt comfortable with his unwavering confidence.

    Tina, sorry to hear about your reaction - I had one too, not too bad because they stopped it right away, but PITA anyway because it added to the long day.

    Jen, sorry to hear you are having tough time. This really does a number on your head. My sister was just saying today how it's a full time job and exhausting just keeping yourself in a positive place psychologically, and I hadn't really thought of that, but it's true.

    Lorraine, same to you - have fun in Mystic, try to forget this cancer stuff for a few days.

    Addie, thanks for making me cry with that song! It made me sad - I do have family and friends who care and love me very much, but I don't feel that support from DH. I am so disappointed in how my husband and children have reacted and responded to this. I try to give the benefit of the doubt that they just don't know, and sometimes I think maybe it's a good thing that they are not feeling like they have to change at all, but it would be nice if I could get a little caring from them without having to ask for it. That's my little pitty party.

    Andrea, so jealous of friends who will help with your yard! I look around at my weeds, and I wish I had someone who would offer to do that. I have all sorts of friends who say, "if there's anything I can do", but I just cannot bring myself to say, "sure, could you weed my garden?" I think if there's one thing I've learned from all this, is that you don't offer, you just do it, and I hope to be able to pay that forward.

    I had a great day today, even though I did not get to sleep until past 3 AM yesterday. I was really wired from steriods, and didn't take Ativan - forgot, and then it seemed too late to take it. I was obsessed with troubleshooting the TV situation here and trying to get it working, so finally went to bed. Today I had good energy, we went to the beach, I made dinner - just some leftovers and a salad, but I can still taste. I am enjoying it while it lasts - took my Neulasta shot, and I'm sure I'll crash tomorrow. But, it's supposed to rain, and my BF is coming to stay for a few days, so that will be perfect.

    Well, it's getting late again, so I'm going to try to get some sleep.

    Lynne

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

    #21: I am grateful to be allowed ibuprofen and aspirin for the first time since January!

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  • Addie29
    Addie29 Member Posts: 307
    edited July 2015

    Lynne im truly sorry I upset you. That video does a number on me too. And I'm sorry you get get the support from your family. Some people I guess don't know how to react to a family member having cancer. It's really unfortunate. Everyone deserves love and support.

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited July 2015

    Add me to the list about people dreaming about hair! :-)

    Good luck everyone that goes today!

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  • gingeel
    gingeel Member Posts: 102
    edited July 2015

    It's so frustrating how one Dr. says one thing and another Dr. something different! Ugh. Well, I'm putting my trust in her, and hoping that I'm not extending my chemo for no reason. Was looking forward to being done, but didn't want that to make up my mind for me. Oh, well. I'm going for it.

    Lynne, I'm sorry that you don't feel support from from your family. I think they are just used to what is going on and feel like they can act "normal" around you. If your not complaining, then they must think your ok. I do notice that with my own husband. If I'm walking around ok, then I must be!

    Positive Spirit, enjoy your mini vacation and your Anniversary! Hopefully it will get you out of your slump. Feel better!

    Today, cause I'm feeling good, and my mom is here to watch the kids, I'm going to meet up with a few friends for the afternoon. Haven't seen some of them since April, and they are all off today from work. Looking forward to some catching up!

    Enjoy your day ladies, and good luck to all heading to the chemo bar.

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

    good luck to everyone heading to the bar today!

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  • Alibeths
    Alibeths Member Posts: 656
    edited July 2015

    anyone else feel completely in a fog following chemo? I had chemo on Friday and I'm just starting to come out of it. Sleeping for like 15 hours straight. Crazy. SO over this!!!!!!!!!!

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

    Addie, The song made me tear up in a good way. Thanks for sharing it.

    Positive Spirit, Enjoy your time away. I hope it will help you. Cancer really plays nasty tricks with your mind.

    Alibeths, I thankfully am able to drive home from chemo and do not feel any chemo fog. My days of exhaustion are Saturday and Sunday after my Tuesday infusion. I think that's when my counts drop the lowest and I get a low grade fever.

    Gingeel, It is frustrating that docs say different things. Some consider 2-3% not to be a benefit. When people are deciding to do chemo or not and would benefit 2-3%, they typically are told there's no benefit (though the risk-benefit may swing against chemo in these cases). I am not sure what percentage they consider to be of benefit when making these suggestions. The frustrating thing is that the research study that compared dose dense and weekly head to head did the dose dense for 6 weeks so that the time frame would be the same. Hence there was more neuropathy in that group...they got 6 full dose dense infusions so they got more total Taxol. In actuality the 12 weekly Taxol hit the dose dense total after 9 infusions, so they actually get more total drug and have the higher likelihood of neuropathy. The trade-off is that the doctors can monitor more closely for it and adjust the dosage as needed. I have never figured out why they were not compared head to head in their current form. My guess is that there may be a short term 2-3% benefit, but that the overall survival is still identical.

    Lynne, The next time a friend says "what can I do" reply that you would love a half hour of help in your garden followed by a half hour if just relaxing and visiting over some nice cold iced tea. You will appreciate the help and the visit and your friend will appreciate the opportunity to help. They will gain more out of it than you. Our friends do feel helpless and really want to know what to do. It is nice when they know to step up, but most only know that if they've been through something similar. Most do truly want to help though.

    Good luck to all headed to the chemo bar for your cocktail today. Wishing you maximum cancer killing and minimal collateral damage.

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

    I slept pretty well. I guess melatonin, ibuprofen, Tramadol, and lorazepam would do that :)

    The port removal site is a hundred times more comfortable than the port insertion site was. It aches, and the dressings itch (I've apparently become sensitized to regular paper tape as well), but I can manage it. probably change the dressing (not just the tape, which I did last night) and leave the new one on for another 24 hours. After that, it's just steristrips for 2 weeks, assuming they last that long.

    I'm taking a lorazepam before my sim since I still have twitchy chest muscles, but since I teach tonight, it'll just be ibuprofen after that. If I'm feeling okay after class, I'll walk outside or on the treadmill at 2 MPH in the evening. Because of the holiday I don't teach this weekend, and I'm very glad for that. Watch for my stars 'n' stripes do-rag!

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  • ankledolphin
    ankledolphin Member Posts: 99
    edited July 2015

    just popping in again to say hi....so many posts to read when i decide to not log on for just one day...so many things to answer back on...so here goes a brief answer for everyone!

    i honestly can't imagine what a lot of you are all going through with no help/support from family....all i have to do is ask, but i hardly do, since i never was the one to do the asking, i was the one who gave the help....

    good for everyone who is able to take a break, go outta town...I have been given a 2 night stay at the local theme park..all i need to do is find the time that my husband can go as well so it will give my daughter some normal summer stuff....this week my SIL and nephew are in town from AZ and all its done it rain! hoping it will stop so the kids can go to a baseball game tonight....

    addie...loved that poem and I am posting it on my blog....

    i have a meeting on monday with my surgeon....1 more major chemo as I call it to go....so game plan is going to hopefully be set soon, since I hate being in limbo with things....

    my side effects suck...my hands/nails are killing me an typing is a chore...but here i am typing to you and i have work to get done...can't just stare at this computer all day long!!

    :)


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  • Addie29
    Addie29 Member Posts: 307
    edited July 2015

    so happy that everyone enjoyed that poem. It's from a blogger. I will have to find the site. Also my doc told me I need to be more active. I'm gaining too much weight. It's so hard to be motivated when you feel tired or are just in a brain fog. I am going to try my hardest to keep my weight down. I feel gross just looking at myself but I guess it comes with the territory. I'm at the point now where I don't want to eat because I don't want to gain anymore weight. Thinking about joining weight watchers. I'm so happy that I've been able to connect with some of you on Facebook. All you ladies are just so lovely.

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  • Susfai64
    Susfai64 Member Posts: 3
    edited July 2015

    Thisis my first time posting in a forum. Karen, sorry about the return of your cancer...fight on! My cancer was diagnosed in Feb but started chemo (T and C) in May. Surgery was first. 3.6 cm. tumor. All positive. micro metstisis to one of 4 sentinel lymph glands. No on codex testing. My oncologist has been unclear about whether or not to have 4 or 6 sessions. Just finished my 4th and have scheduled appointment in 2 weeks to discuss. He just tells me that it will be 6 if I'm tolerating it hmmm. Just wondering if anyone else has faced the uncertainties of treatment and how they coped and their personal decision making process


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

    Addie, Now is definitely not the time to diet; your body needs the protein to heal. When you are hungry from those steroids, eat, but just make healthy choices...especially since you probably can't taste the food anyway. Also don't drink your calories...drink water, decaf iced tea, etc rather than juices or soda. You can tackle the weight afterwards. I find that my daily walks actually give me energy. I tend to have more energy at the end of my walk than when I leave. They also are my "me" time and give me a mental break from everything. Just me and my music. Which reminds me. I added Myley Cyrus's The Climb to my song list. I really don't like her much, but when I heard the song on the radio this morning it spoke to me...so I added it!

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

    Susfai, We were posting at the same time! I tackled that last time around. My MO originally thought 6 rounds. He never did oncotype though. I pushed after 3 rounds for oncotype. It came back low, so he refused to do last 2 rounds even if I would have wanted them. It is not too late to ask for oncotype test. Results take about 2 weeks though. Good luck! And welcome to the April gang!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    Welcome, Susfal, and best of luck. I'm glad you found us, but sorry for the reason why.

    KSusan- really great news that the port coming out was easier than the going in. For some reason I always stress out of proportion in re the port. It has never stopped being bruised in almost 4 months and I will be glad to say goodbye

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  • gkodad
    gkodad Member Posts: 188
    edited July 2015

    I start DD Taxol tomorrow.

    Some of the differences in recommendations have to do with your specifics - pre-menopausal vs post-menopausal, node positive vs node negative, ER+/Her- vs Her+  vs Trp Neg, proliferation rate, etc.  It's a complex set of variables.    Dose dense and weekly are equally effective - weekly is just less expensive and easier on the patient in the early rounds.

     

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

    Katy, mine was always bruised, too. Today I both yawned and swallowed without discomfort!

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  • Susfai64
    Susfai64 Member Posts: 3
    edited July 2015

    KBeee. My MO offered me the oncotype testing in the beginning. He explained that it isn't usually done with positive node finding. My mother died from metastatic CA. sarcoma in her leg, not breast cancer, so I told him that I tended to want a more aggressive treatment. Now I am 4 sessions in, and we all know how much fun it is, but I'm still thinking of pressing for the full 6 sessions. No guarantees with any of this. Recurrence had to be a GREAT disappointment. (Understatement). So great of you to offer us this support and return it to you in kind. And others.

    New topic for my discussion....weight gain! What the heck? Steroids (just 3 days each session). And taxotere are just a great recipe....trying to walk and eat sensibly. Any thoughts?

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  • slv58
    slv58 Member Posts: 1,216
    edited July 2015

    to all the Canadians! No disrespect to my American sisters, just our day to beam with pride!



    image

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

    yay Gkodad! We ride together, then, chemosabe!

    Happy Canada day Slv, Andrea, and anyone else!

    Addie, I feel a little toad like my self just now. How many more dosing do you have? We should totally do some kind of fitness thing to celebrate end of treatment...what do you like to do?

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    Addie, no worries - like KB said, good tears!

    Also, KB posted link to that blog a couple posts before yours:

    http://www.huffingtonpost.com/jodi-meryl-wallace/o...

    Lynne

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

    Happy Canada Dsy Andrea and SLV... And anyone I missed!

    Susfai, if you can tolerate 6, then go for it as long as MO is on board. The steroids increase hunger and can contribute to weight gain. Both Taxol and Taxotere can also cause fluid retention in some people.

    KSusan, So glad all is well with port removal.

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

    #22: I am grateful for a fun job.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited July 2015

    KSusan, your daily gratefulsremind me to be grateful, even when I'm not feeling so grateful!!

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

    Any chemosabes riding with me today?

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