August 2011 chemo, anyone w/ me?!

YaYa5

deb, i met with my RO yesterday.  i'm having simulation tomorrow and i really dread it.  i don't know why.  i think i'll be starting rads next week.  the nurse was pretty adamant about not using anything other than aquaphor, lubriderm, etc.  she told me if i wanted to use something else to bring it to them so they can check the ingredients.  i'm getting full-breast radiation, too.  my RO said that the chance of lung damage is about 2% and we're both lucky that our tumors were in the right breast. honestly, i'm really dreading tomorrow.

vtellen

Deb, yes I was told that about 5% of my right lung would be scarred from the RADs. My skin has been fine until now, 18 txs in. It is still fine, just hot feeling and red. Nothing that is very hard to ignore. i am putting on some kind of aloe combo cream that they gave me. I have 8 more to go, then 5 boosts. I am 7 weeks out from last chemo. I still have neuropathy and muscle pains, also my gums still have pits in them. But, overall my energy is WAY up.

Robyn6463

Ellen, I'm glad to hear you sounding so good! We're getting there!

DebinUtah

Thanks, everybody, for the skin cream info.  When you say Aquaphor, do you mean the same kind of greasy stuff you put on your lips? I'm so relieved to hear that most folks are finding the SEs of radiation to be managable.  Do you have any problems wearing a bra? 

Robyn and Ellen--I'm so happy to hear that you're boh doing so well.  Life after chemo sounds good!

YaYa--I'm dreading my simulation appointments as well.  I know there will be very little pain involved (the needle pricks for the tattoos), but I'm just so tired of being poked and prodded and positioned.  Just zap me and get it over with.  I still don't undetstand why I need THREE separate simulation appointments.  The way the RO talked it's all about getting the computer/lasers configured accurately.  Still seems unnecessary.  

Okay, so when does my hair start coming back?!?!  I've still got the same crispy stubble on my head that I've had since the 2nd round of chemo.  Is there anything I can do to stimulate growth? Special shampoos? supplements? standing on my head?

Patience and hugs to all!

YaYa5

deb, i had my simulation today.  (i love to say 'stimulation' and watch the techs react!)  it truly was a piece of cake; it took maybe 30 minutes from getting undressed to getting dressed again.  they put me on a table with laser beams going down my front and coming from the sides.  then they did a cat scan.  i had to put my arms above my head, holding onto a bar, and i had to be still for maybe 15 minutes.  it wasn't long enough to be uncomfortable.  i got 3 tats and the needle sticks were nothing.  i have to go back for a 'practice run' in a week or two and radiation will start the day after the practice run.  they take the positioning and the lasers very, very seriously and i'm sure that's a good thing for us.  my RO was there today to approve the positioning and she'll also be there for the practice run.  i didn't need to be anxious about it and neither do you!  after what we've been through, it's truly a walk in the park.  when is your simulation?  let us know how it goes.

michelleo13

YaYa5, interesting that you had to hold onto a bar. For my simulation, I laid on this bean-bag thing and once they had me positioned correctly, they vacuumed all the air out of it to make a mold that they'll use for every treatment to position me properly. I had 5 tattoos, probably because I had 2 positive nodes and they're also zapping the node area.

I had my simulation a week ago and I'm still waiting for my appointment schedule. I hope to get started the week of Dec 12.

JMULL

Hi Ladies!  Wow!  So many of you are so far into rads.  My last chemo was supposed to be yesterday, but due to all the zany side effects (mainly the hand/foot syndrome and out of control itching) my MO canceled it!!  So I am officially PFC!

I have my RO consultation next Tuesday followed immediately by my simulation.  I am guessing that I only have 1 simulation as that is the only appointment I have.  My MO said I would have to wait 4 weeks after my last chemo, so I am hoping to get started no later than the last week of December.  I am a little nervous as I am a left side mx. 

Hope everyone is well and has minimal s/es!

MizMarie

Congrats, Jmull, on being done with chemo!  Today would have been my last day, but my schedule got pushed back at #4 because of low platelet counts.  I am now anxiously counting down to next Thursday, which will truly be my last chemo (God willing and I have enough platelets).  Not looking forward to feeling crummy afterwards, especially with Christmas things to do, but I am so glad that the finish line is now within sight!

DebinUtah

YaYa--glad the simulation/stimulation was a breeze!  I'll let you know how mine goes.

Hurray to JMULL for being done and MizMarie for being sooooo close!  Thank heaven for internet shopping as we deal with all this through the holidays, right?

Good wishes and tiny side effects to all!

sandy115

Has anyone started on Hormone thearapy yet.I just got a script for tomoxifen hav'nt taken it yet.the oncol wanted me to go on arimidex said he thinks I may be postmenapuse but not sure if he is not sure and I take arimidex it will not work on postmenapausel women.However tomoxifen will work but 2.6 % less affective than arimidex I choose the tomoxifen he said I could switch after a year if the blood work comes back saying my estrogen levels are still low has anyone else encountered this problem ?

vtellen

I am wearing a bra that I sell in my store, called "Coobie". Check them out on line. They have pads, which I remove ( I am a 36 D) My skinny daughter also wears them( 32 A) They are one size fits most all! It has been the only bra that I will wear since surgery. My scar runs right where the old underwire bras would hit. If you can't find them, I would be happy to send them to anyone! Free shipping to you guys! They are inexpensive $18, $20 w/ lace. Wonder if the moderaters will be ok w/ my posting this? I will try to post pics of them on my Blue Moon Clothing fb page!

I had 1 simulation, then went straight to tx. I also have the blue form ( as Michelle has). Yesterday, I got up on the table, laid down, and said " wait a minute, this isn't my form is it?" First glitch that I have experienced w/ the rad techs. They better not keep spacing out on me!

Vivie

Hmmm Ellen , I'm interested in these bras..could you inbox me links on FB ? I cant find a proper underwired bra to wear , and I HATE , detest , HATE unwired bras.Ugh.

DebinUtah

Sandy--my onc said exactly what yours did; I'm 49, and they're not sure if I was perimenapausal before all this or not.  I've also been doing some research of my own, and the most recent studies (some on this website) show that a combination of the two drugs over a 5-year span is actually the most effective for women like us: Tamoxifen for 2 years and then Arimidex for another 3 or vice-versa. Unfortunately, the studies also show that a high percentage of post-bc women stop taking the hormone blockers all together after 2 years because they're so tired of the SEs.  Discouraging. My GP said that the low dose of Prozac she's put me on (20 mg) should help with some of the SEs--hot flashes, insomnia, mood swings.  Let's hope!!

sandy115

Debinutah how long have you been on tomaxefin ive only been taking 2 days so no S/E yet or not anymore than I already have 4 weeks post chemo still having joint pain mood swings and hot flushes chemopause.Hopefully it will all end soon and we can get on living.

Robyn6463

Deb and Sandy,

The MO did bloodwork for me to determine menopausal status - and it said I was post-menopausal at 48 w/out symptoms. (I had a thermal ablation about a decade ago, so no periods). The initial plan was exactly what your's is Sandy, the two meds over either 5 or 7 years, depending on how protocols change. But in the meantime, we've decided to remove my ovaries so I'll be taking femara for 5 years instead. Haven't started yet. I finish rads on the 16th, and then my surgery, so maybe mid-January. I'm not looking forward to the S/Es at all.

At this point, I'm still not having any real menopause symptoms...I think. I'm getting night sweats, though, and maybe mood swings, short-tempered, (but that just might be caused by inconsiderate people).  

YaYa5

i had my practice run today and start actual radiation tomorrow.  i almost lost it when i was on the table.  i think it's the first time i've cried since i was diagnosed.  it's just a lonely experience once the therapists leave the room and the machines move around you.  i felt completely alone and vulnerable.  i know it's easier than chemo, but for some reason, it was much more emotional. anyone else?

MizMarie

Good luck YaYa on this next leg of the journey - you'll do great!  Like every other step, the first one is the scariest....

I'm scheduled for my last chemo on Thursday, and hoping and praying that it actually happens.  My platelet count was not very high last time, and I doubt that it has rebounded yet.  I have a few purple dots on my arms and my gums have been bleeding a little lately; both are indicators of low platelet levels.  Onc doesn't want to do labs until the day of treatment, so I'll have to wait until then to know if it's a "go".  I'll get Herceptin regardless, but still, I am so tired of Chemo and just want it to be OVER!  

sandy115

Robyn my oncol said I wouldnt benifit from having overies removed even though I only have overies as I had a hysteractomy due to cervical cancer years ago.Blood said said I was postmeno but oncol not 100% sure been on the Tomaxefin 4 days now.

vtellen

Yaya, I had to work a bit to get through the radiation scariness. Some days have been harder than others. What has helped me is to focus on my toes. Sounds crazy, but some days the buzzing of the beam seems to go on forever. So, to keep myself from hyperventilating, I will very very slightly wiggle my toes. Just to distract me for the few seconds. Also, I take a few nice, deep breaths between my 2 zaps. It is a headgame, you will find what works for you! Sometimes I try counting backwards,etc. Also, as soon as I lay down in my position, I close my eyes. And, try to develop a rapport w/ your techs- you need to be able to trust them.

ALK

Mary,

 Besides cancer, we share something in common.  I too had a daughter get married this year.  She was married in August.  We were so excited and it was a beautiful day.  

 How are your treatments going?  Did you find out if you were her2+?  Best of luck to you.  Tell me about the wedding. 

ALK

MizMarie,

 You are almost there.  I understand the disappointment.  I too was supposed to have my last #6 treatment on December 2.  My platelets were too low as well.  I went in again on Tuesday to find out that the platelets are getting lower instead of higher.  We will get through this!  I'll keep you in my prayers.  Let me know how it goes.  Keep your chin up.  Do you have RADs next? 

YaYa5

vtEllen, thank you so much.  i'm trying to engage the radiation therapists as much as possible, but there's no comparison with the chemo nurses, right?  i'll always say that it's a very lonely treatment. i had my first radiation today and it wasn't too bad.  at least i knew what to expect!  i'll definitely try some of your tips.  thanks again.

MizMarie

Hi ALK,

I had neo-adjuvant chemo, so my next step is surgery; onc says probably the first week in January (depending on surgeon's schedule and assuming my treatment happens tomorrow).  I haven't felt super well today and actually had a low-grade fever last night and today, less than 100 and tylenol is bringing it down, but doubly frustrating because I now have two potential barriers to that last treatment.  Thank you for the prayers - I will do likewise for you!

DebinUtah

YaYa--My heart hurt when I read your post; I hadn't thought about how lonely radiation will be--no other patients, no husband, no nurses at my beck and call.  But I love Ellen's suggestions--I'm going to wiggle my toes ever so slightly and think of you all. 

Sandy--I actually haven't started Tamoxifin yet.  I go in for my first Herceptin W/O chemo treatment on Friday, and my onc said he'd give me a prescription then.  He knows I'm nervous about taking it, but he acted as if taking out my ovaries was a last resort. Please keep us posted about the SEs! Robyn--what's Femera?   

MizMarie--GOOD LUCK TOMORROW!  I'll be thinking of you!  And I'll let you know how the Herception Only treatment goes on Friday.  They say it should take less than an hour total.  That sure beats 7 hours of the TCH, huh?

Peace and patience.

MizMarie

Whew! I had just barely enough platelets, so the final dose of Taxotere is dripping in as we speak

Robyn6463

Femara is just another one of the drugs...for post menopausal women. I've had mixed opinions from the docs about the ovaries, but decided to have them out because both the MO and RO agree that it's another safety step to prevent the recurrence of estrogen positive tumors. I'm not using them. Concerned about bone density, hot flashes and all that, but the surgeon today explained how those symptoms can be managed, so it's a go. Sometime in late January.

Six more rads to go! Finish up next Friday. I focus on the giant computer screen in the corner as it counts out 7 points around a circle. It is really lonely though. Ask for good music! 

MaryjRN

I like reading, that for the most part, rads is going ok for most of you.  Keep letting the rest of us know your suggestions.  I'm due to start mine 12/27.  I've also read from ladies on different forums, that it is a very lonely experience and can cause her to cry or at least want to.

ALK, the wedding went well, but I wish I could do it again  with energy and my own hair! A lot of people were interested in ME (because of the bc), so I downplayed it and just kept focusing the attention on the bride/groom. I'm glad I wore a long dress so I could wear flats. (I'm 5'9") I did not trust heels + neuropathy.  They'll be back for Christmas....can't wait!

MaryjRN

Oh, I meant to ask, if any of the ladies are on Tamoxifen, what time of day do you take it?  My MO said it didn't matter.  I start mine 12/19.  I'm scheduled for that for 2 and 1/2 years and then I am supposed to start 5 years of Femara.  I was 95% Estrogen/99% Progesterone positive.

DebinUtah

Lots of congratulations due!  Hurrah for MizMarie for having enough platelets, to MaryjRN for surviving the wedding in style, and to Robyn for finishing rads next week!  YAY!

Maryj--I actually had a conversation with my MO today and asked the same question. He said that since the hot flashes at night are the most common SE, some women find that taking the tamoxifin in the AM helps a little; he said others who are heavier sleepers like to take it at night so that they sleep through the worse of the SEs.  Please let us know what works for you.  I start taking it tomorrow.  

michelleo13

Ellen, I just ordered a couple of Coobie bras. I'll let you know how I like them!

The hospital called a couple of hours ago and my first rads tx is on Tuesday at 4:45 p.m.  Looking forward to getting this next chapter underway!