August 2010...anyone starting chemo besides me?!
Comments
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Ginger - I am so glad to read your post, I was wondering many times how you were doing. Please ask the doctor if you could get a prescription for neurontin (gabapentin) perhaps. I think Lisasinglem takes it and it helps a lot with her neuropathy. I saw the neurologist and he also prescribed it for me but my neuropathy is numbness so far and the neurontin is for pain/tingling I think. There are some other medications available too. What about the L-glutamine and vitamin B6, also vitamin E. Some others take L-carnitine for the neuropathy. I have many suggestions because I am hoping you will feel better. The B6 helps me the most I think - I take a pretty big dose but since it is water-soluble I just pee out the excess. Hang in there!!!0
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Hi everyone,
I also started chemo in Aug, 2010. I didn't find this thread late October and the group was so well established that I felt wierd posting. I had DD AC x 4 and DD Taxol x 4. I started coming here and reading your posts often since I developed neuropathy after my 3rd Taxol (numbness in toes and balls of my feet both sides.) My oncologist offered to change to Taxotere for my last treatment but I figured that the evil I knew was better then the evil I didn't and I opted to get the last Taxol treatment. Well, my left foot went completely numb and I felt like there was a tourniquet around my right big toe. I started taking Vitamin B6 and L-acytel Carnitine supplements and there has been some improvement. I also have a prescription for Neurontin but I think the supplements are helping so I'm sticking with them right now. GINGER I know that there are other medications for the neuropathy pain too. I hope your doctor can offer you something that helps!
I've been coming to this site more often since I finished chemo on November 16th. My husband wanted to celebrate and I wasn't feeling celebratory. I found myself more teary then I had been since diagnosis, I was completely without energy and generally felt down. None of my friends could understand. Well the 3 passing weeks have restored my energy and reading your posts and knowing I wasn't alone helped me immensely.Thank you!
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ginger: Glad you are noticing an improvement. I did not have the neuropathy you are experiencing with taxotere. The last 2 treatments I began to notice a very slight numbness is finger tips and feet. Since I have mastered what I hope is my last forever chemo I'm focusing on week two (next week) after, cause I know the taste buds start to recover more. My go to food is chick-fil-a ice cream, pudding cups, yogurt. I'[ve not been able to eat pnut butter since I began this party. Keep getting better. Beth
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OMaz I'm interested in staying in touch with your over the long haul since your are Her2 positive. We seem to have similar treatments. Myself, I have at least once positive lymph that I know of. Won't know precisely until the Jan 4 lumpectomy. Can't remember if you had neoadjuvant chem or surgery first. Beth (feel free to PM if you'd like)
HER 2 I would really be interested in all of us that are HER 2 positive keep connections as we move forward. Since Her 2 is a very interesting little nasty factor, it would be nice to have fellow chemosabes that are keeping up with the latest and greatest. Beth
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Librarylil - I would love to stay in touch! I had the lumpectomy first at the urging of the rad onc. Glad you have some time to recup before surgery. Feel free to PM me too!
toomuch -Welcome and just join right in!!!
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Ginger It is good to hear from you again! I'm sorry you are having so much trouble with neuropathy but hopefully some of the ideas the other ladies have given will help and as time passes I hope it will get better.
Toomuch Welcome to our group and I'm glad you decided to post. Even though you have finished your chemo you are welcome to stick around and keep posting. We have several ladies now who have recently finished and they are giving those of us who still haven't finished yet (like me) reports from the other side! It is good to hear that you feel like your energy is returning now that you are 3 weeks post chemo.
librarylil I certainly hope that our group will continue to remain active over time. When I look at this chemo forum I see groups of people who started chemo back in 2009 or even 2008 that are still active. Hopefully we will be like those groups and continue to come back and check in with each other as we move forward. I am also HER2+ so I agree it is good to keep up on that and it will also be good to keep up on the research about Tamoxifen and other AIs since many of us will be taking those for years to come!
So far I am doing ok on day 3 of Abraxane. Last night I had a slight temperature (99.6) and this always worries DH. I have told him that we are supposed to call the dr. if it gets up to 100.5. I wasn't too worried and just went to bed but since he usually stays up later than me he woke me up a few times to take my temperature. Sometime in the middle of the night it went back down to normal and has been normal so far this morning. Also last night I was achy all over but that seems to be better this morning too.
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Hi everyone--I am 10 days post my last chemo and feeling really good. For me, the last Taxotere seemed to be the easiest for side effects--whether that is because you are used to feeling crappy or you are used to the side effects. The worst part is the taste and for me it was almost impossible to find things that I could drink--water had the taste and feel of slime so I have tried almost every type of juice on the market, fizzy water and other random drinks. Just in the last couple of days am I able to tolerate water. I start rads in January so I have heard you need to drink water like crazy so I am trying to build up to it
I am to start Tamoxifen right before xmas--eeekk--have looked at a couple of the Tamoxifen groups to see about side effects--probably not the best idea as we all know that everyone handles things differently but I am too curious. I have my CT simulation for rads on Dec 22nd so my xmas present this year will be new tatoos and a tamoxifen pill....could start a strange 12 days of christmas song with this stuff.0 -
too much -- your emotions are like mine. I thought I'd be jumping around - doing all kinds of things and that I'd be totally estatic. But like you, I feel teary. I feel cut loose somehow and scared. Like, 'Okay, what's next?"
I was thinking about it and I think it's because while you're on chemo, you have goals - measureable time frames between treatments, etc. But once you're done, it's like "now what?" My port is hurting this morning for some reason and the back of my shoulder and rib are still sore. Just wish I could be done.At church today, I asked another lady who had a lumpectomy, LN involvement and chemo five years ago, how do you deal with post-chemo and she said "Yes, I know what you are feeling. You just do one day at a time."
I think it's about counting blessings too, which I'm trying to do more of!
kelly 0 -
GOOD DAY CHEMOSABES AND RADICALS!!!! I hope this day finds you all in good spirits!
Toomuch: WELCOME! You don't have to be shy with us. Stop in and chat. We are just talking about existential matters as they relate to chemo and rads. Should our thread interest you, come back any time. Everyone is welcome. We might be well-established but we also readily embrace anyone going through the same experience we are. I am glad our words have helped you. We traverse all levels of emotions here from being melancholy to road rage! Come one, come all! I am glad you find solace here. We are glad to have you. May you continue to get better. Best of luck.
Omaz: mentally I think you are wanting to do 6 but physically your body is saying no. I think stopping at 5 was beneficial for you even though not going for number 6 is renting space in your head. When I was getting all my pre-chemo scans, my best friend's husband said they are trying to make sure you are healthy enough so they can start to kill you! He is the consummate joker but, more to this point, stopping at 5 is probably a good thing ultimately!
Calamtykel: last night I purchased a $600 Hon lateral file cabinet off of CL for $25! In any case, the gentleman I purchased it from was a podiatrist turned acupuncturist. While waiting for my friend to show with the truck, we got talking. I told him about you with the cording and how that hit me right out of left field and how I was getting the distinction impression our battle never ends. He said we ladies with bc have quite a battle on our hands. I am still stunned about the cording and it just does seem like it can turn out to be the never-ending battle. That cording still stuns me. I would probably get so pissed that I would stretch to the point where I break them! Oh, Kel....may your DH win more money and may you sell a bunch of stuff on the net! Also, you do everything you possibly can to increase your bottom line and forces beyond our understanding help those that help themselves so you should be in for some more bottom line help!!!!!!!
Carolyn: I am glad my response helped you. We can all have bummer days with this madness. I hope the Xmas decorating went well and Mr. 40-Days is feeling better as a result! Try to have a good day.
JSW: The Office is hysterical! I love when they are trying to resuscitate the Red Cross dummy and they all start dancing to "Staying Alive!!!!" Everyone in the conference room...!
That is interesting that Abraxane could replace Taxol and Taxoterrible! Good news. Hopefully it is easier on us. That D stuff I had to take last time (I am so in tune with my care!!!!) was better than the A relative to SE. I am not looking forward to going back on the A. I am sure I have no say in this matter if the nationwide shortage is over, I will be back on the nasty A! As for your insurance, after your doc sends the letter all should be fine. Don't forget, our insurance co's are happy to pay for us to get bc txs because they know if they put up a fuss the bills can get much, much higher! I am sure you will be ok.
The temp is scary, however. I would take my temp all day today if I were you. 99.6 is way too close too 100.5 so keep close monitor. I am glad you are feeling a little better today. May your aches, pains and temp BE GONE!
Iowa: 28 people and a pool party in Iowa at Christmas...now that is a good time! Have fun! That is going to be one crowded pool!!! Joking...I know not everyone goes in at the same time...at least I hope not!
Ginger: soo good to hear from you again. I had the breathing thing, too, but not to the extent you did. The girls on this thread have reminded me red blood cells being low can affect breathing but my blood work did not show anything. The light-headedness can be caused by dehydration especially with you having lost so much weight in a few weeks. Have you tried Ensure? Even DanActive which is basically like liquid yogurt? Mojo is largely used in reference to sex drive! I think the tree being up is a big help! The lights will cheer you up. I hope you start to see more progress and your numbness subsides. Best of luck to you and I am glad you checked in again.
Zenith: what is wrong? You don't like bug spray for Xmas dinner?!??! I know what you mean. This week is #5..gross! I will be back in bug sprayville for 2 weeks! Almost done, almost done...we must remind ourselves we are just about over all this mess. I hope you have a good Sunday.
Libraylil: don't forget, as Tex told me, taste buds only last 10 days. There are like 10,000 taste buds on our tongue (after Tex told me that I had to do some research) and they just fall off. If you brush your tongue (good way to avoid bad breath!) that will help them move on! Unfortunately we never know what day we are on unless we trace back to our date of birth and count a plethora of 10 day increments! In any case, thankfully they are short-lived!
Rachel: I would encourage to try to avoid reading other women's experience with tamoxifen b/c, like you said, everyone is different and so, so many women are having zero SE with Tamoxifen that you might want to hold off and wait to see what your own experience is. As for fizzy water, plain seltzer/club soda or Perrier is all I can tolerate these days. I still do 1 part NON-diet Ginger Ale and 4 parts seltzer and that is ok. You could definitely make a strange 12 Days of Christmas song with what we are going through! I did not know rads required a bunch of water also. Why is it that so many people tel me to add Crystal-would-like-some-cancer-causing-agents-Light (!!!) to my water?!?! That stuff is filled with phenylketoneurics! Stick with your water and good luck on Tamoxifen.
Calamtykel: counting blessings is the best thing you can do. Honestly, I think of cancer like a flu: they have no cure but they can treat it. I don't really think about it going forward. Who knows what the future holds? Just keep living your life and forget about those things you can't control.
Well, I have a little shopping to do and I want to get the Sunday paper so I can peruse some flyers! I have some more gross chemo this week...ugh! Oh well....I must persevere! Happy Sunday all!
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Toomuch - Just in case you didn't know, Lizzymack is our fearless leader!!0
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Wherria - How are you doing??0
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BCO FRIENDS, I AM DONE WITH CHEMO. PUT YOUR HANDS UP!!!!!!!!!!!!!!!!!!!!!!!! I SAID PUT YOUR HANDS UP, IT'S ALL OVER!!!!!!!!!!!!!!!!!!!
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Thanks JSW19, OMAZ, CALAMETYKEL and LIZZYMACK1 for the warm welcome. Even though I've finished my chemo, I'm not done with my journey. I'll be having surgery Tuesday to remove my fallopian tubes and ovaries and a mass in my axilla, which was noticed after my lumpectomy. It's in my radiation field and the radiation oncologist wants me to have it out. My radiation simulation is on Dec 15th and I start rads on Dec 22nd. I expect that I'll be checking back often as I head down this new road. I have no idea what to expect from radiation and I am beginning to get a little freaked out.
CALAMETYKEL I also have severe axillary cording. Finally found a LANA therapist 3 weeks ago who gave me some great stretching exercises. I had been stretching for 3 months already but her's really seem to be helping. PM me if your interested and I'll see if I can describe them in detail to you.
I'm looking forward to continuing my journey with all your support! Reread this post and it didn't sound right. I actually am not looking forward to the journey but I am looking forward to going through it with your support!
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Zachsmom - Whoo hoo - Congratulations on finishing chemo!!!!0
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toomuch - yes, I'd be interested in any stretches or massage - -- will PM you --- I think my rib area and shoulder back are not as tender as they were. I can now straighten my elbow and get it higher than the other day without feeling the cording in my wrist.
Lizzy - counting blessings. Today I was talking to our pastor's wife. Without putting down my fears and anxieties, she told me about Uganda. Her son is a missionary there and she just returned from a long trip there. Her son and daughter in law actually just adopted a 7 year old orphan while they are living there. Anyway, bunch of folks from my church went on a missions trip there - building churches and homes, etc. She was telling me how different the mindset is there. You know for years they've been kidnapping children for the army and all of the horrendous stuff that goes on there. Anyway, she said "You should see the attitude of these women -they've lost husbands, they've lost children, they're sick; their children are sick - they have minimal medical care and yet they have this incredible attitude of 'No matter what happens, God will walk through it with me'". She said there is basically not a sense of "anxiety" and "worry" that we have here over our problems. I guess it's all perspective. Yes, cancer is life shattering but we're so fortunate to have what we do here in the US and more developed countries. What I find most interesting are those people who went on the missions trip, although they stayed in mud huts without bathrooms, beds, etc., their attitudes are all that their "hearts" are still there and all they think about is returning there......
Well, it's Sunday afternoon - can't figure out what to do. It's freezing outside and windy. Think I'll put on a pot of hot chocolate on the stove and take the kids outside to run around and get tired!
New neighbors moving in next door tomorrow - I will miss the lady who lived there. She lost the house because her boyfriend walked out on her. 
May we all continue to count each day with out loved ones as a blessing! 0 -
ZachsMom: Woo hoo!!!!
Tomorrow is my last chemo!!!
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Zach's Mom Congratulations. Just think each day better and better. You did it! Beth in NC0
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Calamtykel: In the past when I have remarked about how we could have it worse and how we could live in Kabul and a have a bc dx is perfectly analogous to what you reflected on this morning in church. We are very, very lucky to live in the US and have this disease even though we complain about our healthcare system. We would be luckier if we lived in Canada where, as you know, there is socialized medicine and they are more advanced than the US in a number of different respects relative to cancer treatment. A friend's brother lives in Canada and he has lung cancer. His sister lives in the US and she has uterine cancer. Based on their collective intercontinental experience, Canada wins! I should NOT be letting Beavertail and Buttertart know this, however!
Zachsmom: Congrats on crossing the finish line! I cannot WAIT to be done! I have had it with this crap! Good for you...party on, Wayne!
Toomuch: good luck on surgery Tuesday. Keep us posted and as for rads, everyone says it is easy...and much, much easier than chemo. I know a number of people outside of bc.org who have had rads and they say it is nothing at all. I have to have it but it will be summer. For me the biggest challenge is the potential for more fatigue and the travel to Yale etc... For me a 20 minute rads session turns into over 2 hours with travel...oh well! Whatevs!
I hope you all have a lovely evening
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I think we are all old enough to remember Billy Squier's "Christmas is the time to say I love you" so in lieu of a poem, attached is the link and below are the lyrics!! My assignment is that everyone use the link and their lyrics and GET HAPPY! Enjoy!
http://www.youtube.com/watch?v=EixTYzkwj8c
Christmas is the time to say "I love you"
Share the joys of laughter and good cheer
Christmas is the time to say "I love you"
And a feeling that will last all through the year
On the corner carolers are singing
There's a touch of magic in the air
From grownup to minor no one could be finer
Times are hard but no one seems to care
Christmas Eve and all the world is watching
Santa guides his reindeer through the dark
From rooftop to chimney, from Harlem to Bimini
They will find a way into your heart
Christmas is the time to say "I love you"
Share the joys of laughter and good cheer
Christmas is the time to say "I love you"
And a feeling that will last all through the year
Just outside the window snow is falling
But here beside the fire we share the glow
Of moonlight and brandy, sweet talk and candy
Sentiments that everyone should know
Memories of the year that lays behind us
Wishes for the year that's yet to come
And it stands to reason that good friends in season
Make you feel that life has just begun
Christmas is the time to say "I love you"
Share the joys of laughter and good cheer
Christmas is the time to say "I love you"
And a feeling that will last all through the year
So when spirits grow lighter
And hopes are shinin' brighter
Then you know that Christmas time is here0 -
PS- I chose that link because if you watch the video the ORIGINAL MTV veejays are in there...all of them! That was back when MTV played videos!0
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Libraylil - I am HER2 + also, and would love to keep in touch.
TooMuch & SoHard -- Good luck on your surgeries Tuesday! I'll be keeping you both in my thoughts.
ZachsMom & LadyinBama - Congratulations on getting to the end. I'm nearly 3 weeks out and I can definitely feel my life coming back. I realized yesterday that I'm laughing more. I had a huge belly laugh on Friday night, and I haven't laughed that hard in over 6 months. It felt SO good!
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Day 3 past last chemo and struggling to the finish line. Very tired, very happy to know this will hopefully be it, and also scared about what is next. Mastectomy was done in June and now that chemo is finished, just have herceptin and tamoxifen to look forward to. Also regretting decision to only take one side off, thinking about getting the other one done too. Not sure I want reconstruction. Just tired of the appointments, medicines, ect. Kids are running around like crazy and I want to have the energy to catch them! Maybe later in the week.
Best wishes to those who are still going and congrats to those who have finished (even though I know we have mixed feelings - at least we will hopefully start feeling like ourselves).
Michelle
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I'm getting ready to do the happy dance, last TC of TCH tomorrow Yippee!!! Super glad to be done with the rest of you !!! I'm still wondering how radiation is going for those having rad. I'm sure is must be a piece of cake compared to the poison.
Lizzy-it is a good time-the little ones love swimming indoors in the winter because they miss it. Luckily the pool is big , plus kiddie pool and hot tub.
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Zachsmom, LadyinBama, Mommichelle, and IowaSue Congrats on your last chemos! So happy for all of you and hopefully soon you will be feeling better.
Good luck to Toomuch and Sohard on your surgeries this week.
Rachel I'm glad to hear you are feeling better now that you are getting past your last chemo. I wonder if the recommendation for water during rads is to help the skin? I think that drinking lots of water is supposed to help keep your skin healthy and rads are of course rough on the skin. Hopefully Sweeney and others who have moved on to rads will let us know how things are going on that front. DH's step-mom was diagnosed with BC back in January and did not need to have chemo but did have rads. She did not have much trouble at all, it really does seem like for most people the biggest problem is the hassle of having to go every day.
My temp has stayed normal all day today and the aches are not too bad. In particular I am getting some aches in my hip (just on one side) that come and go but not terrible. Also feeling pretty tired, I laid in bed for about an hour this afternoon but didn't actually fall asleep. Just laying there in the dark and quiet made me feel better though. I expect to be able to go to work tomorrow but may come home early if I get too tired. Hope everyone is having a good night!
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Hi there---From what I have heard from others who have gone through rads--the more you drink--keep yourself hydrated--the better you may feel. I guess we will find out. I have been feeling pretty good since my last chemo but have noticed in the last few days that I seem to be bloating like crazy. Called the doc today and I have appointment at a clinic tomorrow morning to go through my symptoms and see what is happening. My Oncologist isn't handling this but a Nurse Practioner who handles post-chemo care. I seem to be bloating with fluid retention from my last chemo and they are going to run some tests including chest xray, ultrasound to look for any issues. It is crazy--I feel fine except for the bloating--but it is getting worse each day. Anybody else have similar issue? I was hoping that getting out and walking, exercise etc would help but it seems in the last week that the more I do--the more bloated I am becoming. Strange but supposedly is a side effect of Taxotere that can be extreme in some people--lucky me.
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Rachel - I just posted this on the taxotere/carboplatin/herceptin discussion:
For me, even without constipation I still had what I called 'belly bloat' that was uncomfortable. I don't know which part of the TCH or steroids or anti-emetics were responsible for this but I got it everytime. For me it lasted a few days and with the last chemo was the worst.
For the last chemo I was having trouble for almost 10days post treatment, my belly was poofed out and hurt. Not sharp pain but just sore and uncomfortable.
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Thanks Omaz. I am almost 2 weeks post my last Taxotere. The bloating seems to have become worse in the last week. Seems to get worse everyday--so strange. I am going to the appt tomorrow as they will just doublecheck to ensure no real bloating in abdominal cavity because that can become a bigger issue. Honestly, when you think that you are done with the SE and starting to feel better....really is the gift that keeps on giving
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Rachel - I have read that sometimes women take a mild diuretic because of the taxotere induced fluid retention. Glad you are going to the doctor, hope that you feel better soon!0
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Anyone also gaining weight with the bloat. This time I seem to be bloating 2-3 weeks out from the tx but my weight seems to be going up pretty quickly too. I can't decide if I'm just gaining weight or water but I gained like 5 lbs in a week!
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Wow. Many people finishing lately. A big congratulations to all of you!
I'll be joining you in the swamp Friday Lizzymak. I believe you're diving in today. Healing vibes to you. Only one more left after this week! Already getting jittery about Friday...
Bug spray... yup. Chemo mouth is nasty and seems to last longer each tx.
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http://www.youtube.com/watch?v=SgM3r8xKfGE