April 2010 starting chemo

toughmom38

kad22- I was told by the nurse at my plastic surgeon's office not to bother with regular bras while I still have the TE's because they won't fit right.  She told me to wear sports bras but I will admit that they are quite a pain to put on and take off.  It rolls up when I put it on and the rolled up part always lands right on my port. *ouch*  I tried on one of my underwire bras the other day that I used to wear before and while it still "fits" it definitely does not lay flat all the way around like it used to.  I will be glad to have these lovely TE bricks taken out!

sumby-Before I started chemo I considered using the scalp cooling caps but after reading about how cold they have to be kept and changing them every 30-40 minutes and lugging around the cooler I decided I had enough going on without them.  Losing my hair has been the most traumatic thing for me out of all of this and I admire you for using the cold caps.  The thing I think about the most every day is when will my hair start growing back?  If you can get through all your treatments using the cold caps I think it will be worth it.

SGJ05- CONGRATS!  I'm a week behind you.  Let me know if the SE's from #6 are even worse than #5.  I'm sending you good thoughts and I hope your side effects are minimal!!!

dutchgirl- the steroid also turns my chest and face red and it feels warm to the touch (like I have a sunburn!).  I have never gotten that burst of energy that some people feel, either.  I don't think ANYTHING has given me a burst of energy since I started chemo...

{{{HUGS}}} to everyone and thank you all for sharing your good and bad experiences.  It helps me get through all of this with my sanity intact!

Jennifer

caltex_catlady

sumby, I've been getting taxol rather than taxotere, but they're cousins. I get lots of bone and muscle pain for several days after treatment, but it goes away (just in time for the next treatment ;-) I won't say it gets easier, but each time you're one step closer to being done. I do take steroids (dexamethasone) the day before my taxol treatment (12 hours and 6 hours before) and haven't had any reactions during infusion, I think due to taking those steroids. It's just hard to have to wake up at 2:30 in the morning for a dose. I also haven't noticed any increase in energy from them, although it would take a lot to make me do housework. At least I haven't really had problems sleeping after the steroids, which some people get.

dutchgirl6, it's funny you mention the flushing. I get that from taxol. I'm very fair, so it looks like I'm really embarassed all day for a couple of days after the treatment. It's just these big round spots on my cheeks. No blusher needed, at least.

Congratulations, SGJ05! I'll add your smiley face to the top message in a moment. And if I've missed anyone else who has finished their chemo, let me know.

Karen

JenC

SGJ05 - CONGRATULATIONS...  Best of luck with the remainder of your treatment.  that is great that they gave you a certificate you deservie it..

SGJ05

Thanks everyone, you all have been an awesome support to me!!!!! I will be sure to return the favor for all of you, but bear with my absence for about a week as I go through the side effects--I am already feeling the effects:(

Toughmom, I will post side effects for you before you go through tyour last one!!!

marcy4

I take weekly Taxol and my experience is the same as caltex-catlady.  I take a total of 10 dexamethasone before my treatment 12 hours and 6 hours before.  I take 5 at 10 pm and 5 at 4 am.  Also can easily sleep after taking them.  My infusions have been uneventful with no adverse reactions.  I do get a flushed face for a day or 2 following the treatment.  I get Taxol for 3 weekly doses and then one week one off. Then it repeats.  I find I do not need anything for constipation or pain medicatin afterwards. It could be because my weekly dose is smaller.  A week ago I felt some tingling in the tip of one finger, but that only last for about half a day. Other than that I have found it to be fairly easy.  I also get some other IV premeds for the Taxol on the day  i take it.(Ondansatron, Benedryl and another one that starts with R for my stomach). 

arubajan05

Shygal - Hugs to you and positive thoughts.    I think we have a similar diagnosis and I worry , too, if I made the right choice in a lumpectomy.  My rads will start first week of August I think.  Is it common practice to do the MRI before the rads?  I have my radiation onc consult next week and I am not sure how this process works...

Hope all of you have a wonderful weekend! 

Hugs!

jan

tpcjkk

I am now FINISHED too!!!  This last session was not too bad.  I did not get as sleepy as usual.  I highly advise getting oral Benadryl as opposed to IV Benadryl.  They give me 50mg right before the Taxol, and it works like a charm.  My PICC line came out too.  Yay.

With the last two sessions, I have noticed more numbness and tingling.  The numbness actually feels like my hands and feet are swollen, but they aren't.  The tingling feels like my feet are asleep.  All of these symptoms went away before the next Taxol.  My onc told me that my neuropathy is mild (based on it being intermittent and not causing lack of strength, coordination or fine motor skills).  So I don't take any meds or supplements for the SE's.  He says it's likely to go away on its own whereas if you have problems with strength, coordination, or fine motor skills, it's more likely to last longer or be permanent.   

I have a rads "planning" appointment in about 10 days.  I should be starting rads in about 3 weeks.  I was told that I would get periodic blood draws during rads, as it can affect blood counts.  Little nervous about this, since I won't have a PICC line and it's so hard to get blood draws.  

I am one of those that elected lumpectomy instead of mastectomy.  There was disagreement amongst my doctors about which I should have, and my case went to the tumor board, where again there was disagreement, but ultimately, I elected to go with my surgeon's recommendation, which was the lumpectomy.  I have to say that naively, I thought I could salvage the year by choosing the less invasive procedure (and finish treatment faster), which was of course, totally MISGUIDED on my part!!  Due to the location of my tumor, the lumpectomy did change the appearance of my breast (my nipped is pulled downward), which some of the (male) doctors have commented on as a reason maybe I should choose mastectomy, but I was never really too concerned about appearance.  I have a lot of sensation in the breast/nipple, which a (female) doctor commented was important.  Ultimately, it was the opinions of the female doctor and my surgeon that seemed to make the most sense to me which is that there was not much more to be gained by a mastectomy since I would still need rads, and due to the location of my tumor (sitting on the bottom crease of the breast), all of the the breast tissue in the vicinity was totally gone anyways. I have no doubt that at the first sign of trouble (i.e., questionable mammo, etc.) I will choose to get bilateral mastectomies but that is a bridge I'll cross later.  I am actually OK with that.

Good luck to those as they near the finish line.  

~Julie 

saralmom

Congratulations to Julie and SGJ!!  Love hearing about some of us finishing this craziness.

Arubajan - I was wondering about the MRI after hearing about shygals recent news.  I had a mammogram on my unaffected breast last week and it was fine.  Then I had a surgeon follow up and she said that the rad-onc will take it from here for awhile regarding images.  And she thinks I'll have another mammogram of both breast next May-ish.  I feel like they should look at me before that!  I hope there is an MRI sometime before May and perhaps around the start of rads?  Then I am supposed to be on a 6 month plan - mammogram, 6 months later MRI, 6 months later mammogram, etc...  Plus onco bloodwork, etc...

Well, I am officially done with 6 weekly Taxols.  6 more to go.  Which makes me so excited to be done with 10 out of 16 total treatments.  My Taxol still continues to be uneventful.  I don't take dex at all at home - and I never did for any of the treatments - even AC.  I get it as part of my pre-meds in the IV though.  I don't notice any SE from that.  The infused Benadryl still knocks me out for hours after the chemo, but by dinnertime I am fine.  Am definitely having more bloody noses when I have to incessantly blow from the drippiness.  And am noticing an increase in what I assume is neuropathy in my fingers.  They HURT.  And I can't do buttons, or open pop cans, or open ziplock bags, etc.  I am in the clinical trial for the acetyl carmitine, but I am now assuming I'm in the placebo group.  Such a bummer.  But still better than nausea and fatigue - which I haven't had AT ALL.  

Have a good weekend all!

Sara 

kad22

SGJO5 - Congratulations!!! Yeah another one of us done and on to the next step! Hope those SEs are nil to none!

Julia123 - Thanks - I too have been wearing those cami's with the shelft bra but, it has been soo hot to wear two tops that I just have stopped wearing them. Tried a sports bra and think that may be the route I need to take for now. Need to get a larger size of course because I just can't stop gaining weight!!

Has anyone's hair started to come back even in the slightest yet?? Just wondering.

caltex_catlady

Sara, I'm doing that ALC trial as well. I've also had a fair amount of neuropathy, mainly in my fingers but also sometimes in my feet. It seems to come on a few days after a treatment then last for several days.I figure it could be that I'm getting the placebo, but maybe I'm getting the drug and it doesn't work or I'm getting it and it's actually making the neuropathy better than it would have been but just isn't getting rid of it completely.

Last time I saw the onc before treatment, she said we'd keep an eye on how bad it is and may have to lower my dosage of taxol. No! I just have one more treatment left and don't want to have to stretch it out to another one or maybe end up with less than the full amount. I want to feel like I've run the full course. But, I don't want the neuropathy to be permanent, so we'll see what she says on Monday. I hope my taxol tx on Tuesday is still my last one so I can give myself a smiley face!

Karen

dutchgirl6

Julie, hooray for finishing your chemo!!! I find it very encouraging that so many of our April group are finished or close to finishing.  It makes me realize that before we know it, the end will be here for the rest of us. Enjoy your treatment "holiday", good luck with the rads.

You must also be thrilled to have the PICC line removed.  I for one can't wait. I think that I am more eager to have this thing out than to finish with the chemo, lol.  I hope that you don't have too much difficulty with your blood draws in the future, that has been the one thing that makes having the PICC bearable, no needle sticks!

Kad22, I have a bit of chemo fuzz, around the top of my head.  I look like a "Peanuts" cartoon character, I am pretty much bald except for these straggly hairs that are growing straight up.  Oh, and those nasty chin hairs seem to be making an appearance, and I had to shave my legs this week.  What's up with that?

Emme

SGJ05-

Congratulations on finishing your chemo!  Yeahhhh! you did it!  Congratulations.

I got back from helping my daughter move.  Wow...I had no idea how little stamina I have. I was trying to help pack and tape a few boxes and next thing I know I was having to take a little nap.It was really sad when the moving truck came....I am going to miss her so much!

Have a good night everyone.

SGJ05

Thanks everyone for the Congrats on being done:) I am dealing with the side effects from the last cycle so not too much celebrating yet, hopefully by the end of next week!! I cannot wait to cheer you all on as you finish up your treatments(Hugs)!!

Toughmom--I know you are going in for your last treatment this week and I wanted to let you know this cycle has not been nearly as bad as #5, so there is light at the end of the tunnel:) I have had some nausea that has been intense at times, however compazine, steriods, and Zofran have taken care of it. I have also had some minor GI upsets and exhaustion, but this is pretty typical for me. The neuropathy and muscle aches usually hit around days 5-9 so nothing there yet and I have been less emotional this time round--thank goodness, LOL! And the greatness news, no mouth sores, finger nail color changes or pain, and I still have my eyebrows, thinned drastically but still there-YAY (hope they stay with me)!! So there is some good along with the bad:) So for those of you starting Taxotere-keep your chins up, you can do it!!!!!

Hope you are all having a great weekend!!!!!!

Emme

Good luck to all my sisters having treatment this week.  Lets hope for a good week.

Emily

shells43

Hi Catlady, add me to your list. Don't know how I missed this link until now. I started my chemo 4/16/10. Done with the FEC and have had one taxotere. Have tax #2 on Thursday.

 I see lots of you are finished, congrats! Did you find the fatigue to get a little worse each time? I'm working full time but have been taking sick days as needed. This last time the fatigue hit me a little later, about days 5-7. No bone pain with the taxotere, have been reading about some of your experiences. Just a lot of GI discomfort and now hot flashes.

Hair? What hair? I'm a bandana girl. It's so hot in Fl I just reserve my wig for church on Sunday! The rest of the time I wear a scarf or bandana, to work. At home I wear a bandana or go bald. My kids are older and have gotten used to seeing me like that now. Hubby calls me GI Jane, which I sort of like. My eyebrows are almost gone and have started using a brown pencil to fill them in.

Also wondering if any of you who had Mx feel like their scar is stuck to the chest wall? Is it supposed to be like that or looser? Mine feels really tight. I've been swimming a lot to try to stretch it and I'm not sure it is helping. Any ideas?

I'm really looking forward to being done with chemo and starting radiation. I'm glad to hear radiation is a breeze compared to chemo!

Hope we all get through this with flying colors!

 Shelley

kad22

Hi Shelley - glad  you found us even if it is for this!

SGJO5 - gald to hear you SEs are not too bad this time - just think this is the last time you have to deal with them - yeah!

Well I go for #3 today of Taxol - weekly ones really fly by! Hope it goes faster today- last time I was there forever it seems!

Good luck to everyone this week!

Kelli

Emme

Welcome Shelly!  I found I was more fatigued with each treatment.  It's been really hot here in the Northeast too we are in our second heatwave.  I haven't been wearing my wig either...just hats and scarves...and in the past week...bald.  I go bald around my home and at my friend's pool.  BUT last night I went to the ice cream place and today for lunch at a local restaurant...I went bare.  Well, bare headed that is   It is very liberating! 

Kelli-

I hope your treatment went well today!

Everyone else with tx this week- I wish you luck!

Emme

JenC

Emme - I am so impressed that you went bare out in public.  I am debating on what to do when I go on my sons field trip on 8/5 to water country.  Thinking about the bare thing but then again not wanting to "scare" the kids or be stared at all day, on the other hand how the hell do you keep something on your head at a water park???  Either way I am sure it will be a great day. 

Best of luck to all having treatment this week.  Fingers crossed for no SE's  I start back with treatment on the 29th...

Jen

dutchgirl6

Welcome Shelley, this is a great group of supportive friends.  You and I seem to be on a similar schedule, I will also have Tax #2 this week.  I really admire you for working full time during chemo, actually I admire all of you April-ers who continue to go to work every day, or every few days.  I took this time off (thank heavens for employment insurance) and sometimes I feel guilty because I haven't had such a bad time with SEs, and feel that I could have continued working, but then I have a day when I have no energy, or my white cell count is low, and I realize that I did the right thing for my situation.  

Jen, you could look for one of those retro bathing caps with the daisies on them, talk about making a fashion statement.  Although that would probably be even more hot than wearing your wig.  How about a big floppy hat?  

Emme, like Jen I am so impressed that you went topless, what a brave thing to do.  By the way, I like your new picture.

Good luck to all who have tx this week, and may any SEs be mild.

 

shells43

Hi Dutchgirl6,

Did you have any of the bone/joint pain I've read about with taxotere? I didn't. I was really wiped out on days 5-6, with GI distress (putting it nicely) and did go home from work in the afternoons. My boss is great and my job very flexible, I'm so lucky. But last week and this week I've felt really good. Also wonder about the potential loss of fingernails I've heard about, are you doing any of the cold treatments to preserve yours?

Hope that your treatment goes well, will be thinking of you!

Shelley

dutchgirl6

Hi Shelley. I had terrible bone and muscle pain after my first Tax, in fact my whole body ached.  I also had Neupogen, four shots.  The pains started on day 5, the day of the last Neupogen.  It lasted for two days, which happened to fall on Saturday and Sunday, what a way to spend a weekend!  I found that Tylenol Extra Strength helped, and I took T3 with codeine at night. This time I will start taking them on the Friday night to avoid having the discomfort.  So far my fingernails seem to be holding up.  I asked my onc about icing them during treatment, and she said that it might help, but when I was in for my treatment, I forgot to mention it to the nurses, so I didn't end up doing that, good old chemo brain in action, lol.  I will try to remember tomorrow when I go in for #2.

Thanks for the positive thoughts.

Karin

kad22

Well down to single digit # of treatments left - woo-hoo! Yesterday went well other than having to be stuck three times to get a vein. Sometimes I just wish they could do it on the other arm also. My poor hand was still bruised from last week and here they are slapping it to find a vein. I had to be very good not to scream!! ;-)  Last night had trouble sleeping and bad GI problems but other than that feeling good today and am on my way for a mini-vacay to WI. DELLS!

Jen - for that water park I will let you know what I end up doing today! I think I will probably just wear a dew-rag. They can get wet and then my whole head isn't bald. People will stare but I am used to that already. Nothing you can do about it - just to remember that you are fighting for your life and being strong about it.

good luck to others who have treamtents this week! ((Hugs))!

shells43

Hi Karin,

BTW my sister's name is also Karin, she is coming in tomorrow for a visit. Very excited. Are you taking dexamethosone for 3 days with it? They gave me that to take starting the day before. What is the Neupogen for? I don't have that.

Good luck with your tax tomorrow, I go on Thursday. Best wishes to everyone in treatment this week!

Kad22- Have fun and don't forget your sunscreen! 

JenC

Kad22 - Have a great time today.  Let me know how it goes.  Getting to the point that I really dont think I care what people do or say.  Like you said we are fighting for our lives and that is what matters:) 

Jen

sumby

Hi Dutchgirl: Thanks for the info...lol at the "great, maybe the vaccuuming will get done"....i took a couple of steroids with my first regimen(EC) and i had terrible heartburn/indigestion, not that much energy though : )

No, i won't be taking either of those shots...what was that for?

But what major SEs did you experience with the T?  

sumby

Toughmom38: The truth is the scalp cooling actually works. See a few strands of hair every now and then but it's not noticeable. The only snag is having to have the cap on for almost 4hours every time i go in for treatment and that makes my hospital visit considerable longer. Thanks for the advice, might just stick it out...i'm half way through already.

Caltex_catlady: I wasn't told about the 12 and 6 hour thing just that I should take 4 tabs twice a day for 3 days but will do the 12 and 6 hour thing, now that i know....thanks. Always have issues with sleeping with steroids though  

shygal

Thanks everyone for your thoughts and prayers. I really appreciate it as I await my (hopefully) final biopsy this Friday.  I had to arrange for an Ativan since it's MRI-guided and my previous MRI caused me to panic in "the tube".  I also have a strong family history and will be tested later for BRCA and will have to decide about surgical options if the biopsies come back with a new cancer..yuck.

SJG05 - Congrats....it's a great feeling to be done with chemo and moving on. 

My one piece of good news at 5 weeks PFC is that I can definitely see some new hair growing.  My white patchy stuff has continued to grow and now I'm filling out with more dark brown baby hair....this makes me very happy as I can kind of see a Sinead O'Connor look in the near future.

 Hoping everyone is managing okay with the heat, hot flashes and the dreaded wig......these are my current annoyances but otherwise everything is good. 

LauraM

Shelly43 - When I went to physical therapy, my therapist used Nivea cream and massaged my scars to get them to not "stick".  I forgot what she called this when they stuck, but after about 6 weeks, all of my scars had good movement.  Good luck.

shygal

ArubaJan and Saralmom, you both asked about the MRI prior to radiation.  My Rad Onc actually suggested we do a mammo only on my lumpectomied (?) breast to validate that all the tumor was gone prior to radiation.  I requested that we do a MRI so we could see both breasts in case they had missed something at the initial diagnosis since I was never initially offered a MRI in January and I know that DCIS shows up in MRI but not in a mammogram.  This makes me realize that you have to be your own advocate because the Docs are not necessarily focused on all of you....just your one cancerous breast.

I'm glad I asked for it since I'd rather find out any new issues now rather than after I have completed radiation and have gone back to my real life.

dutchgirl6

Shelley, my sister is also coming for a visit, on Sunday, I am also very excited.  Her name is Sylvia, but wouldn't it be funny if it was Shelley!!  Yes, I am taking Dexamethasone, the day before, the day of, and the day after, with breakfast and dinner.  The Neupogen is to build up the white blood cells, some chemo sisters get a related drug called Neulasta.  I had neutropenia after my first FEC infusion, so it was something that my onco felt strongly about.  Better safe than sorry.  By the way, the side effects with the Dexamethasone were that my face and throat area turned red, and I looked sunburned.  Also, I did get an energy spurt last night, I organized the storage closet, and Sumby, I even vacuumed it!

The major SEs that I felt from the Tax have been fatigue, a little bit of neuropathy for the first week or so (tingling in my fingers and feet), a twitchy eyelid, again for the first week, a rough feeling in my mouth, but no mouth sores.  I have been using a baking soda mouth rinse, cheap and stuff I already have at home, this seems to help.  Also, and somewhat indelicately, loose stools, but no actual diarrhea.  I have been using baby wipes on that area, and those seem to be nice and soothing.  I went over all this with my onc today, and she seemed to think that I was doing all the right things.  Hope this helps.

I had my second infusion today, and it was uneventful.  We were out of there in under two hours, the fastest yet.  It's nice when things go smoothly.  Only one left!!  I hope that the next three weeks fly by.

Shygal, that is exciting about the hair growth.  It is nice to see some positive results after all you have been through.  

Kad22, I hope that you had a good day at the water park, nothing like a place like that to cool off.