January 2013 chemo group

LeeA

cancernoway, Yep, I had number six last Wednesday - Neulasta Thursday afternoon. 

Friday and Saturday were my dark days.  Sunday was so-so.  Yesterday was better than so-so.  Today is better than yesterday. 

Regarding Herceptin - I had one loading dose of Herceptin by itself on December 12, 2012 because the chemotherapy had to be delayed due to an infection on the non-cancer breast (I had a double mastectomy).  That first one ran for an hour or an hour and a half. 

The infusion nurses wanted to run Herceptin for a half hour throughout chemotherapy but I asked them to run it for an hour and they obliged and now they know that that's how I prefer to have it (spaced out over an hour).  Who knows, I may even change it to an hour and a half for the first one (I have plenty of time and I want to make sure that first one goes smooth post-chemotherapy because of travel plans).  

I'm so excited for you to be on the verge of crossing the finish line!  We shall do a happy dance online together! 

And duckiedee, so happy to hear things went smooth for you on your first Herceptin infusion!  I hope you are feeling well and great news on the blood counts!  

Ladies, we have all been going through quite an experience together.  I can't imagine going through it without you all!  Thanks so much for all the information along the way - as well as the laughs and the sharing of everything that goes along with this stuff! 

duckiedee

LeeA - Congrats on finishing #6! Yippee! Each day will get better and better.

I am now about 3 and a half weeks from my last chemo. Still have the twitchy eyes and tearing as well as some muscle aches. But I have a new thing happening in the last week or so and that is swollen feet and ankles! Haven't had that at all till now. If it doesn't go away soon, I guess I'll call my oncologist and see what they say. I did a search on here and read that other women had noticed this side effect when taking taxotere. So maybe it is just part of water retention and edema that sometimes happens. But it's weird that I didn't get this at all until recently. Is anyone else out there experiencing this?

Went for my radiation tattoos and planning session on Monday. Hoo-boy! That was a doozy of an appointment. There is certainly no modesty allowed when it comes to radiation therapy. Then this morning I went back to my breast surgeon and had my seroma drained. Was going to just leave it alone to reabsorb on its own. But about a week ago I noticed that my nipple on that side was starting to flatten and invert - six months after lumpectomy! That sort of weirded me out, but my breast surgeon said that sometimes happens even this far out from surgery.

I have my final x-ray and rads simulation on Monday and start full radiation treatments on Tuesday. Will go in daily (Monday thru Friday) for 6 weeks. I'm a little nervous about possible side effects from that, but I know that it will help protect me even more from recurrences. So here I go. The fun just never ends, does it??? Wish me luck!

Anonymous

duckiedee~~Im on Taxol, still a Taxane like taxetere. I get treatment every Friday, and this Friday will be #9. I notice that my feet & legs are very swollen on days 5-6. But it's pretty much gone before next tx.



Blessings

Paula

Zorina

Ywheels - Hope you don't need that shot either!  On the other hand, a blood transfusion in the hospital would  not be pleasant either, so if you have to, try the neupogen. 

Klaudiak -  Welcome to the finish line! 

ywheels22

zorina: WBC was 8.24 so I am good! MO said he highly doubted I would need any shot through the last two but did say it is possible. RBC was a tad low at 11.65 but he was not worried. Said to start taking my multi vitamin again and eat a bit more lean red meat. #3 is Wednesday so here's hoping my counts are good. If they are low I will get the Nuelasta on Thursday so here's hoping they are just fine!!!!

Fighter69

Hi Ladies, Hope all is with you.

Well for the MRI I was unable to get it when it got fixed . Got put on the table and could not fit inside . The tech said it was a smaller model so my doc ordered an ultrasound which is in the am . The doc suggested I get intouch with the surgeon for a lumpectomy

which I did I meet with her Tuesday to discuss my surgery. Chemo doc says that I may have to do 4 more rounds of chemo but said it was up to me my choice. But that is not how I feel , I want to have the surgery and radiation and then he says either way I still will need it and he said he is looking at 3 years from now . I am agt a crossroads. 

Fighter

ablydec

Yay, klaudiak!    I get to say that - that I'm done -  tomorrow!  (Not counting Herceptin, but I'm not counting it!)

P.S.  Are anyone else's nails getting worse now, near the end.  Meaning not just discolored, but sensitive, making it difficult to do things require dexterity.  (Like open a ziploc, etc.) Not life-threatening or suffering, but super annoying.  Like when I was a kid and came in from playing in the snow, and my hands were swollen and I couldn't do anything!)

duckiedee

ablydec - Yes! My nails got worse near the end, too. I couldn't pry open anything without grabbing a scissors or something to help me. And they were all super sensitive. They have turned very white at the tips and are ridged. And there are a few more angry looking than others. (One in particular I have been afraid might lift, but so far it is hanging on.)

I finished my chemo on April 1st - same drugs as you - and started Herceptin only on Monday of this week. And 3 and a half weeks out from final chemo, my nails are already less sensitive now. Hopefully yours will start to feel better too. But I had the same exact experience. Congrats on being done!!! I was positively giddy walking into the infusion room for just Herceptin this week. It was a breeze compared to chemo, and I was in and out in no time. Hang in there, my friend, and know that the worst is almost behind you! Good luck!!!

ywheels22

Ablydec: Congrats!!!! It must feel so good!!!

SeattleMama

Klaudiak, Ablydec, LeeA doing a happy dance for you all.  Hootin' and hollerin'

Right back atcha, LeeA, thank you for being you and sharing info and helping us.....all of you are amazing and I hope you know it.

kingboo

Went to the first Rad doc yesterday. This is what the doc said:

5 weeks of 5 days/week radiation of the whole breast, and the 6 week booster only to the lumpetomy site.

There is a faster option, 16 + 5 booster sessions.  This will be a denser dose.  There are not enough studies in the USA to make any conclusion.  But the European and Canadian studies show good results.

First step is to make 4 permanent tattoos on your breast. At that point the doc will evaluate if I can be a candidate for the faster option. Most ladies tolerate the normal longer sessions. This is the pros and cons for the faster versus the normal radiation sessions.

The doc will give me cream to put on -- udder cream (less greasy), or pure aloe, cortisone if itchy

You can wear bra -- no underwire bra. The doc recommends bra-less as much as possible to air the area out.  I will feel fatigue in about 3 weeks, and probably by the end I may want to wear a cami.

Also NO antioxidant, no Vitamin A, C etc., no green tea.  I am doing my detox before starting the radiation treatment.  Biotin is OK to take because it is mainly ammino acid.

I will meet with a second radiation doc on Monday. I will see if I get a different opinion.

Have a nice weekend ladies. And Hooray to those that have completed the chemo.

Jean

Zorina

Ywheels – It’s really wonderful that you did not need the Neulasta.  My RBC was down to 8 at one point, but I hit 10 on my most recent labwork! 

Fighter – I am sorry that the path is not clearer.  I am not sure what your diagnosis is, but a lot of decisions are made by evaluating the type (ER/PR/HER or triple negative) a well as whether it has spread to lymph nodes.  Perhaps discuss it with the doctor again asking questions about these things specifically and how they impact the recurrence rate.  Then you may have a clearer idea of how to make the decision.

Ablydec – Congratulations!  Yes, my fingers are a problem.  I had to have my DH open a Ziploc bag the other day!  I had my last Taxol a week ago, and while my nails are yellow, ridged and hurt,  I don’t think I will lose them. 

Kingboo – Thx for sharing info on what your RO told you.  I won’t visit mine for a couple of weeks, and this was food for thought.  I know I was lucky to keep the girls, but I got a visual when I read the bit about only wearing camis at the end.  Without a bra, my d-cups are going to look like cow udders and the world does not need to see that!

Dea43

Hello ladies.  I have not been on here for a while.  Congratulations to everyone who has finished the last round of Chemo!  Hang in there everyone else.  It will come soon. 

I too had my last round this past Wednesday.    I will continue Herceptin weekly. (I have always gotten it over 30 minutes/weekly no real SEs on Herceptin only weeks)   I will be going for CT scan on May 7th to see where we are with everything.  No bone scans for now.  Waiting for the bones to heal I guess after having radiation.  I will also continue with Pertuzamab and Zometa every three weeks. In one way I was lucky to be pulled from the Taxotere, so my SEs are not so bad  now... As long as the Carbo did the job!  Not moving into surgery either.   I will be starting Tamoxifen in three weeks.  ARe any of you starting that? Or has anyone had that?  What are the SEs etc.  (I know we all handle them a bit differently) But I read the effects.  Nausea being one of them.  I don't want to walk around feeling sick and tired all the time.  But.. whatever I have to do to fight this thing, right?

LeeA: Good luck with radiation.  I had a week of it.  Not so bad.  I had a friend who just went through 20 rounds of it and made it with little SE issues.  A bit tired mainly. I pray it goes well for you.

SherylB

Hi all,

OK I am a sick puppy. I haven't posted on here for awhile and as I was reading through the posting I had the sickest thought. I am TN so no hormone therapy and I felt a little left out as I was reading through the posts. I have always been told that we are not responsible for our thoughts just our actions, but I can't help but wonder what my brain is all about when I feel left out because I have a type of BC that doesn't respond to hormones. Just thought I would share because I do know that sharing takes the power out of thoughts. I wish the best for everyone.

Hugs, Sheryll

cancernoway

My fingers have been a nightmare for the last 3 treatments. So sore I have to have help for lots of things and it looks like I have bruises under my nails. MO doesn't think I will lose them but can't promise. Weird thing is my nails are growing really fast. Hair won't grow but nails will lol. My radiation will start a month after chemo ends so somewhere around the middle of june. Should be done by August. Herceptin for a year infused then a year by pill, tamoxifen for 5-10 years. I haven't looked up the side effects for them yet. Almost afraid too.



So happy for everyone that's done, I'm right behind you. This time hasn't been too bad so hoping #6 is the same. Biggest thing is I'm tired of being tired. And I want my taste buds back.........bad. It won't be long now. Happy dance for you all and gearing up for mine!!!



I agree with LeeA I couldn't have done this without you all.

Rhonda2

Cancernoway,



We're ending just about the same time. My last treatment is May 9th then it's on to radiation beginning June 10th. I too want to thank all of the fantastic knowledgable woman on this thread that have so graciously shared their story to help us through this treatment.

ablydec

Ditto.   Thanks to all of you, the sisterhood of survival!  As for looking up side effects of the other stuff (Herceptin, tamoxifin), keep in mind that Google will tell us all the possibilities, it doesn't mean we'll get all of them!!

martha323

Wow! So happy to hear about those of you who are finished - or who are close! Congrats - cancernoway, Dea43, ablydec, duckiedee, and LeeA! Hope I didn't leave anyone out! Rhonda and Paulayou are so close!

Sheryl, This is the place to vent, as you know! I hope that the shadow passes quickly re: what is not available to you for treatment. Hang in there - you've been a great help through these months with your advice on many topicss - thank you, especially, for the tip on dissolving tums in mouth to help a tender tongue. I have a bit of that with paclitaxel, but not anywhere near what it was on AC!

Toes and nails - My right big toe nail is slowly turning th color of liver, but it's still intact. Fortuantely, fingrtip sensitivity hasn't become more pronounced, but nails are whiter than usual ...

The support I've received from all of you since I joined in early February has been my source of strength. I've never participated in a discussion board and I think an angel led me to all of you. I hope that we'll still be in touch as our treatments take us in different directions and different schedules.

Hugs and prayers to all of you for a peaceful day - Martha

cancernoway

Sisterhood to Survival......that says it all. 

I'm not looking at side effects yet, I don't want to jinx myself. 

LeeA - I know you have had some night terrors and in the last few weeks they have hit me pretty hard.  To the point that I get up and sit in the chair because I'm afraid to go back to sleep.  In almost every single one of them, at some point in time, I'm being choked and can't breathe and I'm fighting whatever or whoever is choking me.  I wake up kicking and fighting and screaming and gasping for breathe.  Then I can't go back to sleep because every time I close my eyes, I'm right back in the dream.  Last night, I had one and when I woke up I saw my wig sitting on the styrofoam head on my dresser and it scared the shit out of me.  I thought someone was in my room trying to choke me.  I had to get up and try to sleep in the chair.  It scared me to be in my own bedroom.  WTF!  The dreams are different scenarios, but always the choking.  I'm wondering what it means.  I told a friend of mine who is a cancer survivor (different kind) and she thinks it is because everything about my "normal" life is changed and she thinks I feel like it is smothering me now.  Like no matter what I do I can't get away from this diagnosis and from what my future may or may not hold.  I don't know, I'm tired of being terrified to go to sleep. 

LeeA

cancernoway, I am so sorry that you're having to deal with such a scary side effect!  I'm assuming this is a side effect?  Regardless, being afraid to go back to sleep is a really awful feeling.  I've had it a couple times but fortunately not that often.

Regarding the choking, is it possible that you're having acid reflux during your REM sleep?  That happened to me one time and it was horrible!  It doesn't sound like that's the case with you but I thought I'm mention it anyway.  

Your friend's dream analysis is interesting.  Sounds like she might be onto something.  

Here's a link about choking dreams: 

http://dreammoods.com/cgibin/dreamdictionarysearch.pl?method=exact&header=dreamsymbol&search=choking

I hope this crappy dream cycle (as opposed to dreamsicle ) passes quickly!!

LeeA

One more thing - one of my side effects with five and six has been difficulty swallowing the first bites of food at a meal.  It feels like my throat/esophagus is restricted. I wonder if this sensation could be one you're experiencing in your sleep??  It has been a pretty annoying side effect and in fact thought I was kind of getting over it but it happened at the END of dinner tonight.  Ugh.

cancernoway

I take Prilosec every day so I don't think it is acid reflux.  I have had trouble with swallowing during the week to 10 days following each chemo cycle the whole time.  Then when I got that stupid thrush it was that much worse and come to think of it, that's when the dreams started.  Hmmmmm.  I read the Dream Dictionary and I do tend to keep things in and too myself.  I don't really let my family and friends in on my feelings.  I try to protect them since there really isn't anything that they can do to help me through it.  Even when I feel like crap, if they ask, I almost always say I'm doing good, just tired.  Even with my poor DH, I try my hardest to protect him from everything that is going on.  He knows my dark days (we've been married 22 years), but I'm so headstrong I still manage a smile and manage to get up everyday and at least make it to the chair and take a shower and walk to the mailbox.  I'm still working except the week after chemo and I go in with my head held high and even if I don't feel my greatest, I don't tell anybody that.  I just smile and do my job.  I'm the Administrative Assistant of an Acute Rehabilitation Unit so I work independantly most of the time.  I'm the caretaker of the staff so my role is to make sure everyone has everything they need before they need it.  Even when I'm off for chemo, I make sure they have everything they need.  I can't let anybody down, I just don't know how.  I don't know, maybe I'm letting myself down in this process and that is why these dreams are coming and are so vivid.  Thank goodness this part of the process is almost over. 

Nicole503

Hey ladies,

One of the Bellas shared this video on the FB page they started and I loved it so much I want to share it with all the January sisters.  I remember when I was pregnant, my midwife encouraged me to think about the first 3 months of my baby's life as the 4th trimester ~ a continuation of the pregnancy with the baby outside your body but still intimately connected through nursing and lots of skin contact.  I think a similar approach should be taken to breast cancer treatment ~ that the first few months after chemo/radiation are as important an aspect of treatment for healing the spirit as surgery/chemo/radiation is for killing the cancer.

<<A little series of video clips of women discussing thoughts after treatments are all over...  Thought it was relevant and poignant.  Didn't scare me to watch it, so I thought I would share.  http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/survivor_care/reducing_recurrence.html>>

Happy Weekend everyone!

ablydec

Very interesting video clip.  Thank you so much for posting it!  I also was dancing a jig with my family last weekend, "I'm done!", so now it feels anticlimactic this week to say, "but I still can't eat anything (because the taste is messed up) and I'm starving!!".    But still, all in all, it does feel good.

honeybair

Nicole, thanks for posting the link to the video.  it was really interesting as well as helpful.

Skigirl72

Taxol #6 today. Just waiting on my counts to come back. Thanks for the video Nicole. I was just talking to someone about having PTSD after this is all over.The stress, physical aspects, the never going to be like it was feeling. We need to remember when chemo ends we are still battling our physical and emotional issues.

ywheels22

I am not sure how I will feel when I am done but I think, for me, it's going to be a breath of fresh air. I don't think too much on this kind of thing (most of the time) and I hope I just keep moving forward without looking back. I do not know how quickly I will get back to my pre-surgery -chemo self but I plan on working my ass off to get there as quick as I can. My personal trainer is already working me hard and when I am done, I know she is going to slam me with some brutal workouts! My horse trainer is also getting me ready to start riding my own horse in June. I am getting ready to be completey done! I have my TE exchange end of June and I know that will be a slight recovery but I expect it will be fairly simple. I am ready to be back!

LeeA

Debbie said: <<We need to remember when chemo ends we are still battling our physical and emotional issues.>>

This is so true.  I was so looking forward to the end of chemo but then other issues unrelated to breast cancer came up during my first weekend post-chemo.  I've had to remind myself that I'm still in recovery mode from the sixth treatment and that this is typically the time when my white blood count is low (not yet at three weeks).  

A reminder to us all:  we need to take care of ourselves just as much after chemo ends as we did during the chemo process.  Many of us are moving on to radiation and more surgery and that puts even more stress on our bodies both physically and emotionally.  

My husband keeps using the oxygen mask on the airplane analogy.

duckiedee

I finished chemo on April 1st, and though I feel better now (5 weeks later) in many ways, I am still struggling. Everyone expects you to be all jubilant because chemo is over. And - yes - I AM glad not to have anymore taxotere and carboplatin. But I have just started 6 weeks of radiation and will still have herceptin infusions from now until the end of December. So it's not exactly party time yet.

And I have discovered that radiation is much harder than I thought it would be. Harder emotionally, that is... I've only had 5 treatments so far (out of 30 total), and for now I haven't had much in the way of side effects. But the whole planning and simulation process was demeaning and humiliating to me. Tattoos and x's written in magic marker on my chest, having technicians taking digital photos of my bare breasts, laying me on that table and shifting me and touching me like I was a slab of meat. Ugh... I have hated every minute of this. I have met maybe 2 nice technicians who bother to call me by name or talk to me as if there is a real human behind this radiated chest. Most of the rest of them are just cold and clinical, and the whole experience leaves me feeling sad and depressed. I get that they have lots of patients to get in and out in the radiation dept. But so did my MO. And over there I was treated with kindness, respect, and dignity. Seems like it wouldn't kill the radiation techs to smile or show a little compassion every now and then.

I think part of my issue is that I am simply exhausted. I was diagnosed on Sept 14, had surgery on Oct 25, started chemo on Dec 14, and began radiation appointments on April 22. That's a long time to be dealing with this crap. And even though chemo is over, I still feel so many of the side effects that make me feel tired and crummy. Friends who have been through BC all told me that radiation would be a breeze compared to chemo. So these anxious, sad, angry feelings I've had the past week or so have truly caught me off guard. I was expecting to be "breezing" through this and not getting a knot in my stomach every weekday morning at 8:15 when I have to put that stupid hospital gown on and parade down to that lonely, cold radiation room. Maybe part of this funk I am in is just due to unrealistic expectations on my part. Who knows?

But I watched the video clip, Nicole. Thank you for sharing it. It was really very good and captured many of the feelings I've been dealing with. It made me cry, too - only because it was such a relief to hear other women speaking some of the things that were in my heart. It's hard when everyone expects you to just jump up and be this perky little cheerleader simply because chemo is over. I am learning that there is more to this battle than just finishing chemo. Way more...

Thanks for letting me vent, ladies. I apologize if I brought anyone down, and - hopefully - those of you going on to radiation will have better experiences and better staff people at your facility. I am a work in progress, and I will get through this eventually. Thank you for understanding and for letting me share my thoughts. I admire you all greatly.  

ywheels22

Duckidee: it is a long journey. I am fortunate that I do not need rads or any other tx after my chemo is done May 15. I will have to have tamoxifin or one of those for 5 years I believe but not sure yet which one.

I think for me, being done is just going to be a blast! I cannot wait. I know I wll have some SE's to get through but I truly believe my body will bounce back (at least that is what I keep telling myself!) and I am not looking back. I have a full summer of trips, hard core workouts and horse shows planned and it is going to be the summer of me!!!

Good luck everyone. It is a hard long journey but we will get to our finish line and be healthy, happy and free!!!