Starting Chemo, November 2013 Group

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  • FairyDogMother
    FairyDogMother Member Posts: 253
    edited February 2014

    Ellen- big hug ()

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  • jab
    jab Member Posts: 220
    edited February 2014

    Ellen, my sincerest thoughts are with you. Not an easy week. Please let us know how things go....

    Bec - I do feel redefined, that is a good way to say it. Today I was at a neighbours house with several other women and even the conversation seemed more meaningful and connected. I felt myself making more direct eye contact and looking for the 'significance' of the conversation. I feel like I need to make everything count.  On the other hand, I also felt annoyed at how some people do get caught up on little things and make them big  (I am sure that was me a year ago...)

    smrlvr - Yes to the stomach distention! It is not pretty! I totally relate to feeling dependant too. I am (was) very type A, and very independant. It seems to me that my DH and I are going through a renaissance, of sorts, as I feel more dependant, he has more voice. It's like the fulcrum of our relationship is changing. Anyway, it has got to be hard for our men to both care for us and manage the stress of the situation. Maybe your DH is in protection mode as Pat said, and he really just wants to make sure you dont fell any worse then you already do? Men are funny beasts at times....

    I was on Dr Google the other night and read yet another very depressing study, something, I swore, I'd stop doing. It dawned on me that I cannot predict the future with studies (God knows I have tried and tried...), but I think I know a litte more about how my future might unfold. It is either a gift or a curse. I want it to be a gift and make this crappy situation count for something.

    Pardon the indulgance, I'm pretty tired....

    Good night ladies

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited February 2014

    oh Ellen, I'm so sorry.  Birthdays and anniversaries are just plain hard.  We'll be here for you all week long.  So glad you had the party. <3

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  • smrlvr
    smrlvr Member Posts: 422
    edited February 2014

    Ellen, this is going to be a tough week for you.  I will be thinking of you. I hope you have friends and/or family to keep you company.

    Pat and Jab, you were right.  DH was trying to protect me! keep me from being upset that I can't do the fun things I used to do.  He thought that stress would make me weaker.  What he didn't understand is that him keeping things from me makes me feel weaker in spirit; like I've already lost a battle.    I think he gets it now.  

    It must be hard for the husbands; mine is not used to being the nurturer or caregiver and he is doing his best. I am just sick of this s&$@.

    BGC tomorrow at 800 am.  No sleeping in for me. Good night.

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  • BanR
    BanR Member Posts: 289
    edited February 2014

    ellen: sending a big hug to you. my prayers for your husband and i am sure he is happy wherever he is.

    i have been reading all the posts here and am so happy that all of you are doing good.

    i started my chemo november 7th and now my last taxol will be on feb 19th. so just one more to go.

    in the meantime ladies, there is a query which has come up my mind.

    i came across an article which says chemo must begin within 30 days of surgery. Preferably i hear its 21 days. Mine began at 36. The later chemo begins, the more negative the impact is on long term survival.

    the link is: 

    http://www.washingtonpost.com/national/health-scie...

    pls let me know when you began your chemo and what your doctors suggested.

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  • Phebe38
    Phebe38 Member Posts: 197
    edited February 2014

    hi everyone: I can sure identify with what you're going through Amazon, but I also have a sore bum. I'm using an ointment that the doctor gave me. I have to encourage myself through all this. I try to exercise my arm faithful at least twice a day. I come to read daily but I don't post because of this weariness

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited February 2014

    BanR my MO used within 120 days as a guideline.  With sooner being better. Due to infection, my chemo didn't start until day 108.   

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  • inks
    inks Member Posts: 746
    edited February 2014

    BanR - here is a smaller 2003 study that found no difference in starting chemo 1, 2, or 3 months after surgery

    http://jco.ascopubs.org/content/21/20/3792.full.pdf So go figure, which one should we believe. If we want to look for fault in our treatment we will find it. I had my dose reduced because of a cold and that is supposed to give you a worse outcome. But I can't go on living and worrying about that constantly. The way I look at it, it is what it is, if it wants to come back it probably will do so no matter what measures I have taken. All I know is that I have done my best to keep it at bay.

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  • inks
    inks Member Posts: 746
    edited February 2014

    BanR - here's another study

    http://www.jco.ascopubs.org/content/24/30/4888.abstract

    but to sum it up:

    Conclusion This retrospective analysis suggests that adjuvant chemotherapy is equally effective up to 12 weeks after definitive surgery but that RFS (Relapse-free survival) and OS(overall survival) appear to be compromised by delays of more than 12 weeks after definitive surgery.

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  • ellenkc
    ellenkc Member Posts: 173
    edited February 2014

    Here's an old photo from better times, circa 1999 or 2000. I was in my late 40's (still had mostly dark hair!) and Tom was in his 60's. Happy Birthday, Tom!

    image

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  • BanR
    BanR Member Posts: 289
    edited February 2014

    what a lovely picture Ellen!

    i know such pictures do make us nostalgic, but  time is unpredictable and time moves fast ahead and at the end everything will become memories including us. 

    sending you warm hugs!

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  • BanR
    BanR Member Posts: 289
    edited February 2014

    thanks inks for those links...

    and just like you even i had my AC 4th, dose reduced by 10 percent plus it had to get postponed by 6 days also because my counts had gone really low inspite of the neulasta shots. i did read a lot about it that how a reduced dosage affects overall survival. i talked to my onco about it but then as he said that its a decision you have to take, to save some immediate life threatening circumstances. some oncolologists dont reduce dosage, come what may..but anyway. so many "what ifs" keep coming and with a disease like cancer ( and that too i got triple negative type)..negative possibilities are endless.

    thanks QuirkyGirl for the reply..

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited February 2014

    Love the photo Ellen!!!! <3<3<3. So much joy

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  • kimie06
    kimie06 Member Posts: 215
    edited February 2014

    Ladies; popping over from the December group, had my first round of taxol a week ago, anyone experience the numbess and tingling in the feet and hands, if so how long did it last, I did have some wicked leg pain the other day, but it settled.  Now I worry about my hands and feet and there is a little bit there.  I cant regulate my own body temperature its driving me insane

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  • BanR
    BanR Member Posts: 289
    edited February 2014

    hey kimie

    i just finished taxol 3.

    after first taxol, i had terrible leg ache and after 2nd and 3rd taxol i get this terrible itchy burning tingling etc sensation under my feet. 

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  • BanR
    BanR Member Posts: 289
    edited February 2014

    jab: whenever you come across some crazy depressing information do share it with us. maybe some of us can give another counter-information to balance it out! i find this community very helpful to vent all my fears out...since we all are more or less in the same boat ( most of you are hormone positive, but some of us got the worrisome triple negative cancer- you will find us discussing so many fears in the TN thread)

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  • Lissy2304
    Lissy2304 Member Posts: 60
    edited February 2014

    Ladies! Hi and congrats to all that are done, hugs to all that need them, and encouragement to all. 

    I had my last chemo on Jan 9th with Neulasta the next day and it kicked my butt! Super tired, diarrhea, pain, taste buds were GONE, ugh don't even want to think about it!  Much better now! Started Tomoxifen  Feb 2, and so far just a little achy.  Now I have to finish all my fills so I can start Rads, which originally I didn't need, but the guidelines have changed and I got drafted into that protocol. Soooo, that means 6 weeks of rads. It seems like a never ending story, just when you think you are done they throw  something else at you. Needless to say I had a meltdown in my car when I left the onco's office! I thought I was done and moving into the reconstruction zone! Anyway, after I cried, called a friend, sobbed, had a pity party, for about 35 minutes, I felt better and drove home.  I too am TIRED of being boobless and hairless! TIRED of having no energy! I am TIRED of all these appointments!  

    On another note, I don't wish this ordeal on anybody, ever!  Why are we the "lucky" ones that have to do it? I have had 3 friends diagnosed with BR CA recently, bigger tumors, larger number of malignant masses, invasive CA,  and all they had to do was the surgery. No chemo, no rads!  Wow! 

    I am just ranting here! I will do whatever I need to do to beat this UGLY disease, I don't want to put myself or my family through this again if I can help it.  

    Any similar stories? 

    Lissy

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  • Palameda
    Palameda Member Posts: 259
    edited February 2014

    Ellen, sending out hugs and care to you. Maybe knowing that this will be a tough week will help? So much sadness underlying all of our lives. We carry on, soldier on, but beyond our health problems there is the frustration and difficulties of "regular life." In the picture all the love you felt for Tom is obvious in the way you're looking at him. Not everyone gets to have that relationship ever. What a gift.

    My husband and I have had a role switch too. I always took care of everything and my husband was happily passive, letting me be in charge of everything, even when I complained that it overwhelmed me. He has now stepped up, and has shown he can rise to the occasion when necessary.

    BanR, that study was retrospective. In those studies we have to be extra careful of interpreting results. What were the factors that went into delays of chemo in those cases? Were the women "non-compliant" with others parts of their treatment? If they delayed chemo by choice, did they delay surgery, rads and hormone treatment too? I didn't start until day 116. My understanding is yes, earlier is better, but day 120 is the cutoff and I just squeaked in. Like Quirky I had an infection that was life-threatening all by itself and had no choice. I just can't dwell on negative possibilities: that's going to the dark side: I suggest you try to avoid it too as going there accomplishes nothing but anxiety.

    I had some tingling in my fingertips during treatment: gone. Getting stubble on my legs AND some DARK stubble on my head! (Thick in the back, a little sparse in the front) Taking Biotin 5000 2x a day and using women's rogaine and nioxin shampoo. I've lost 4 pounds of water since Friday! How do I know it's water? I'm peeing every 20-30 minutes.

    On another subject. This from Stanford: http://stanfordhospital.org/cardiovascularhealth/lymphaticvenous/documents/FAQs-Lymphedema-Risk.pdf

    Please read if you haven't been warned/followed regarding lymphedema. I had to ASK my MO when I could start working out. She told me to wait until after rads. No one at the RO office told me not to. I've got an appointment later in the month at a lymphedema clinic BECAUSE I REQUESTED THE REFERRAL. If I wasn't proactive, where would I be? Why isn't every woman referred to a specialist? If having axial dissection or more than a few nodes out and/or rads puts us at 15-25% risk why aren't we carefully educated?

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  • lisa137
    lisa137 Member Posts: 569
    edited February 2014

    @Kimie06 - I can't regulate my own body temperature, either, and yeah, it also drives me crazy. I put clothes on. I take them off again. I cover up. I uncover. I feel great but my temp is up. I feel lousy but my temp is normal. I get hot and sweat profusely, or I get hot and can't sweat at all. 

    The only solution I've found is to dress in easily removed layers, and keep a thin sheet, a light quilt, and a heavy blanket on my bed, so that whatever I need at that moment is available.

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  • inks
    inks Member Posts: 746
    edited February 2014

    Lissy2304 - my oncologist has also been hinting that I'll need radiation. I have not had the radiation consultation yet. They say the recommendation is because of being under 40, grade 3, and lympho vascular involvement, micromets in lymph node. And this is not the whole breast radiation that people get after lumpectomy, mine will most likely be chest wall, axilla and subclavical. I have been reading studies about it and my brain is smoking. I might just get a second opinion about radiation it's driving me nuts that much. They almost never did radiation after mastectomy. I am freaking out about possibly messing up my reconstruction with the tissue expander as well. How many more fills do you need? I will not get Neulasta for my last chemo so I will have to wait another month to get my last 2 fills. And that would push the radiation even further.

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  • kimie06
    kimie06 Member Posts: 215
    edited February 2014

    lisa137 ..happy to hear I am not alone in the struggle with temperature.  just another se to deal with for now I guess.  but its terrible.

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited February 2014

    I have temperature issues, too.  Must have a hot bath before bed and then spend the rest of the night trying to cool off or warm up.  My hat is on and off all day trying to do the same.  This was not a SE I'd expected.

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  • Bec65
    Bec65 Member Posts: 312
    edited February 2014

    Ellen -- what a lovely, happy, uplifting photo!  Thank you for sharing that with us.

    Paulette?  Pauleeeeeettttttttttte?

    Re studies, I think we all need to find our own balance between self-education and trust in our medical teams.  I know I have learned that I can find a study to reinforce any position I want to believe.  But, I also know that I don't have blind faith in my MO.  I learn what I can to bring to her for discussion and, thank goodness, she listens and explains things in terms I can understand.  I definitely feel like we make decisions together and that we both have my long term best interests in mind.

    Smrlvr, hope the BGC treated you right!

    BanR, I started chemo day 33 post-surgery.  I feel good about that...I don't think I could have taken it on any sooner.  Too many drain removal and mental health issues to clear up first.  I know how you feel, though.  I'm not triple negative, but I am stage III.  I want to squeak out every percentage improvement I can.  I've done a lot of soul searching and for me, it really boils down to this:  If somewhere down the road this comes back, what treatment decisions will I regret not having made or pushed.  So far, none.  I know myself, and even though my MO wanted to cut my last Taxol by 10%, I couldn't do it.  I wanted my ovaries out, and she reco'd Tamoxifen for awhile before we consider that; I agree now.  I wanted 6 weeks of radiation but my RO says 5 is enough, and right now, I agree.  It's a constant mental balancing act.  Some days I'm a crazy person about it all, and some days I'm very clear-headed.  I'm glad to say, though, the the crazy days are getting fewer and farther apart! 

    Phebe, hang in there!

    Kimie06, I had random shooting nerve pains after each treatment, but they went away during the two weeks to the next treatment.  I still have pain on pressure in all fingers/thumbs except my ring fingers (weird!) and only in my middle toe on each foot.  My feet themselves are okay, thankfully.  I have discoloration in all the nails of the painful fingers/toes.  Strangely, I haven't had any temperature control issues lately.  

    Lissy, yay for you being done with chemo!  I'm glad to hear Tamoxifen is manageable.  I'm sorry rads is delaying where you thought you'd be in treatment, but it sounds like you have a good medical team that's on top of things.

    Pat!  You have hair!  Woo hoo!  I'm so jealous!  I'm one of the ones who did get a lot of unsolicited education on lymphedema from my cancer center.  I had an hour-long appointment with a PT who specializes in lymphedema, and I've been measured for a compression sleeve and gauntlet (that sounds so funny, me with a "gauntlet").  The sleeve and gauntlet are hung up in insurance auth problems, but once I have them, I know how and when to use them.  I also wear a medical id bracelet on my left wrist that is engraved with lymphedema stuff.  (I got that online from In-Style-ID, in case anyone is interested.)  My surgeon had quoted me about 5% of women develop lymphedema, but his nurse pulled me aside and gave the figures you quoted -- 20-25% are what she sees.  

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  • Palameda
    Palameda Member Posts: 259
    edited February 2014

    Bec, let's clarify my "having hair." I can feel stubble and I can see what looks like blackheads on my scalp.

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  • wallymama
    wallymama Member Posts: 146
    edited February 2014

    Ellen, so sorry that everything has to be in the same week as the Hallmark holiday. Lots of cyber-hugs and warm thought heading your way.

    Pat, at this point I'd say stubble IS hair.

    Kimie/Lisa, it's only my head that gets too hot or cold. The rest of me is usually ok, but the head really doesn't know what temperature it wants to be.

    Bec, I'm finding that the things that once would have made me a ranting lunatic don't cause a raised eyebrow anymore.  I'm a much calmer and accepting person that I was before Oct. 28. The little annoying things that hubby does that once would have made me want to pull my hair out, now seem almost cute. Fix what I can, let the rest go and not dwell on it at all.

    Smlrvr, how'd the BGC go today?

    I'm not reading many studies. The few I've read seem to be contradicted by the next one, so I gave up. My father-in-law read one that touted shark cartilage for my late mother-in-law's brand. He spent a long time, even after she died, being angry at her for not trying it. But that study has now been disproven, so he spent all that time being angry about nothing.  I'm trusting that my MO keeps up on all of this much better than I could. The only study I would like to see is one on internal (pellets) rads vs external.

    Ban, why would there be a time limit on when to do chemo? I'm sure that there is probably some reason, but it really doesn't make any since to me. If there is still anything in there to kill with the chemo, wouldn't it be better to do it no matter what the time frame? I actually have issues with having it before surgery. It's supposed to root out and kill anything left over right? So how will it get to anything the surgeon may miss, if I'm having it all now? That's on my question list for my next MO visit. I know that rads are supposed to do the same general thing, but they can only get to what's right there. Not thinking about it a lot, just wonder some.

    Don't know if anyone can help with this since most of you had surgery first, but why is the mass hurting sometimes? It certainly didn't hurt before, or I would have caught it sooner. Since it started shrinking so much ( yeah, chemo), it's gotten tender to the touch. Another question on my list I guess.

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  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited February 2014

    Pat - I miss that wonderful bald photo of you.  It was awesome and mighty!  Good luck with the hair growth.

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited February 2014

    smrlvr-  I got "deported" by my BS.  I had day surgery and was given enough knockout drugs so I took a nap and woke up a few hours later in a day surgery recovery room.  My BS was the one who put it in during my UMX and he asked to be the one to remove it.  I was happy I wasn't awake for the removal even though I had to go through the normal hosptial admissions process and be at the hospital very very early in the morning to be admitted and processed.   Also, my port had been there for over a year and I felt more comfortable having the BS remove it  BTW:  I did not allowed to keep the removed port since it was considered a biohazard by the hospital. 

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  • kimie06
    kimie06 Member Posts: 215
    edited February 2014

    wallymama...omg its totally just my head most of the time !!! drives me insane. especially at night ... oh the joys, I almost melted during my last chemo treatment, thought I was going to be stuck to the chair when I left. Shocked

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited February 2014

    ellenkc- Hugs to you and hoping you find some peace and calm as you get through some tough days.  We are here. Sending you some virtual HUGS.....

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited February 2014

    smrlvr-  As VirginiaNJ said, you need to be aware of what drugs should not be taken while on Tamoxifen.  There is a very short and incomplete list on the BCO.org main website which lists these drugs.... Here is the link:http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.

    You can also use the drugs.com interaction checker for Tamoxifen.... Here is the link for that http://www.drugs.com/drug-interactions/tamoxifen.html.

    FYI- Grapefruit interacts with many drugs besides Tamoxifen and causes the drugs to not be absorbed by the body.

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