Anyone starting Chemo in August 07?

Hi all,

Just a note, had my 5th chemo treatment today.  My 4th turned into a bad one, had a lot of breathing difficulties and was told I had to take leave from work,,,it was for the best as I can only tolerate about an hour of anythin physical and then I need to rest.  My heart test turned out great, but my hemoglobin is low as well my wbc and platelets. My creatinin is high, so I am a bit of a mess right  now.  I hope this chemo is better and my 6th and last is Oct. 24th. Then I do 61/2 weeks of rads and I will continue Herceptin until July, but that will be a piece of cake.

Kaye, I hope you will continue to come and lift our spirits after getting your last treatment.  We will miss you a lot if you don't.

And thank you everyone for the kind words about the twins, they really helped!!!! You are all so wonderful and I really appreciate you. Each of you are amazing, with everything you are going through, you still reach out to one another...what strengh and love.... You are all amazing.

Well, sorry this is short,  My thoughts and prayers are with all of you.  Hope we hear about Stacey soon.  And I am glad this community is praying for her.  There is such power in that.  Well I amust go to bed. 

Kidsmom--migraines are a common side effect of Neulasta, especially for some reason in premenopausal women. I'd heard of people having a really hard time with the Neulasta, and for that reason I requested Neupogen instead. You have to get three shots over three days instead of the one Neulasta, but for some reason it is easier to tolerate for many people. I've had a mild backache with it, but that's about it. Might be something to consider. Don't know about the blood shot eyes and Taxol. Is it just one eye?

Carol--yipes! Hope you are feeling better soon. It's sort of startling how bad one feels when one's counts are off.

I am really worried about Stacey. Her husband hasn't logged back in since Sept. 21. I guess there's nothing to be done except continue to pray for them.

I'm off to tx #3--yee haw! 

Hey to all,

Thought I'd write a quick note because I go tomorrow for Taxol #1 after having completed 4 A/C.  I'm too afraid to even get my hopes up about the Taxol.....they were so wrong about me in so many different areas. 

Tami:  I sure hope your last A/C went well.  I too had 4 of those 'monsters' and start taxol tomorrow.  Were you on a q 2 wk course and DD?

Kidsmom:  I'm so sorry you didn't find the taxol easier than the A/C.....that's also what they told me to expect but I guess I will see.  I gave myself the Neulasta injections after all 4 of the A/C.  I woke up the next morning with a fairly bad headache (several hours before I took the Neulasta) and the headache reached crisis proportions in the next two  days with some 'potent' meds to knock me out on and off for the next 2 days.  Each time after the A/C I have a headache that is very uncomfortable and lasts several days but has never been as bad as the first time.  My onc told me it was the steroids, not the A/C or Neulasta that caused them.  So......who knows?   Do you all sometimes think they're just whistling in the dark for some explaination to give you.  I may sound cynical but I have gotten a real education since bc  and this comes after being an R.N. for 30+ years and spending lots of time around docs.  My best to all of you and know you're in my thoughts.  Will let you all know how the Taxol goes.

One last question (said the 3 year old)  :>  I promise.  Is everyone having surgery and reconstruction or is anyone besides me having a lumpectomy?  Still praying and worrying about Stacy.  A blessed night and wonderful weekend to all.

June

June,

I hope your taxol goes well too.  Even with my migraine, I still think the taxol is better than the AC.  I feel like I'm 80 instead of 34 with all the aches and pains, but those are more easy to deal with than the naseua was.  I saw the nurse practitioner today and she said the same thing about my migraine maybe being from the pre-meds from the taxol in combination with the neulasta????  She didn't have a clue about my blood shot eye.  She said maybe I just scratched it.  Which in hindsight may be true.  I was pretty loopy from the benedryl after by treatment last Friday and maybe Idid scratch my eye when I took my contact out???

Hope everyone has a great Friday and weekend!

Kidsmom

Hi everyone,  I 'm done!  I 'm done! I'm done, I'm done, I'm done!  I had my last of 4 TCH yesterday.  Wahoo!  My next stop is a bilateral mastectomy without  reconstruction.  I am supposed to have that around 10/25.  Then, depending on if there is any residual cancer, I may have 4 more TCH before Rads.  So the war is not over, but I have one clear victory under my belt!  I am very excited, in case you couldn't tell. 

I also gave blood for the BRCA testing yesterday, but the results for that could take about 3 weeks to come back.  I am hoping very much for a negative on those.  The genetic counselor said only 10-20% of BC cases are hereditary in nature but with my being only 32, they are still suspicious.  I also have 2 sisters (under yearly mammogram age), and for their sakes, I want to know-- although they are the type that may rather just not know if they have a higher risk.  And of course, at least I am lucky enough to have my 2 boys instead of girls.  Which would make them significantly lower risk even if I come back with a positive.  Trying to cover all my bases and get comfortable with whatever I might be told.  I have learned that while some surprises are fun... many others are devastating, so I like to be prepared. 

By the way- I have had some weird tongue issues.  Most times I get a few days where my tongue feels burned & I get a couple of little pimples on my tongue.  This last time, I did have a soreness right where my tongue is attached to the rest of my mouth.  Lasted a day or two and then tapered off and is back to normal now. 

My other crazy side effects have been numbness from my feet to my knees lasting a day or two, terrible stomach cramps sometimes lasting a week, the traditional chemo brain and of course, fatigue.  Oh, then there's the hot-flashes, no periods (which I am not upset about), persistent runny nose, insomnia, change in taste, and of course a case of baldness that has really cut down on my time getting ready in the morning.  So, nothing unusual.  Ahhh, to be young and have cancer... 

I must be on some funky drugs, cause I am in a weird and feisty mood!  Well all, I hope you all have a good weekend.  Kaye, I hope your last treatment went well.  I know I will continue to check in and post here for as long as any one else hangs in there with me.  Much love to all my sisters here on the boards-- it has been so much easier knowing you're here and you understand everything I am going thru.  No one can truly "get it" unless you have lived thru it.  Thank you all for sharing & caring.  Angie

kidsmom,

I haven't had a headache from neulasta, but I do get lower back pain and leg pain.  I start taxol on Wens.  What kind of pre-meds do they give you?  My onc took away my steroids and emend.  They worked so well with my A/C tx.  I just have kytril now for the nauseau.  I hope you feel better. 

Hugs, Jackie

June-

I hope all went well with your Taxol.  I just finished 4 tx of A/C and start Taxol on Wens.  Every 2 weeks.  Please let me know how you did.  I did pretty okay with the a/c.  I'm hoping the taxol is easier, but I agree with your theory about the oncologists.  They just blame anything on anything! I had a rash all over, they said it's from the sun.  I haven't been in the freakin sun since July.  Hopefully, we'll all get through this and truthfully we'll never know either.  Have a great weekend and feel well.

DeAnn-

Good luck with your treatment too. Please keep me posted.  I am due to get neulasta after taxol, but i am getting tx every 2 weeks.  Feel well.

Hugs, Jackie

Jackie,

Good luck with your 1st taxol, on Wednesday!  I'll be thinking of you, and praying that all goes well!  I will be getting my last Neulasta shot, and going for my Lymphedema appt...  I hope they can help with the swelling in my hand.  I had SO hoped to avoid the LE se's...

Best wishes,

Harley

Angie, congratulations on your last chemo. You did it girl! Good luck with the mast. surgeries and everything else. 

I had my first weekly Taxol/Herceptin today, and I'm feeling pretty good tonight. I got super-duper tired during the infusion from the Benadryl they give you to keep you from having an allergic reaction.  I slept during treatment and for about an hour after I got home. But, once I woke up, I had good energy,I ate great - no metal taste, and no funny feeling in my stomach. I had never really had any nausea on the AC, but there was always a bit of a funny feeling like you could tell that eating the wrong thing could set you off.  I have nothing like that on the Taxol. I feel, well, almost normal. I hope it continues like this, but just judging by today, give me Taxol any day over the AC. Of course, it helps that I'm doing weekly so the dose is lower. 

I am, however, deeply saddened to learn about Stacy (PixieDust). My heart goes out to her husband, children and family and friends. She seemed like such a sweet soul, and I know that we'll all be sending some prayers and love out for her family tonight. 

A big hug to all,

DeAnn  

Hello to everyone,

Well, I've been up since 4am (Taxol #1 yesterday) and the steroids wouldn't let me sleep any longer.  Grabbed a cup of coffee and decided to see how all my 'sisters' were doing.  Probably not the brightest idea I've ever had since I've been crying for an hour after reading about Stacy.  I am just heartbroken for her and her family.  I guess in so many ways I am the hopeless "PollyAnna" in always believing and wanting life to be fair.  And this comes after 30+ years in the medical field working with every type of patient imaginable!  But, 34 years old is NOT FAIR by anyone's yardstick!!!!!!  So, yes my sisters I am angry angry angry this morning.  But one thing I've  learned after 62 years is that sometimes anger will carry us over rough spots temporarily when nothing else will! 

The Taxol:  Was told that the Taxol does not have nearly the nausea inducing properties of A/C so recommended that I go without to see how I do.  I do have compazine from before and phenegran supp. if I need them.  Was told that the Taxol is much more sparing on WBC production and again recommended that I stop Neulasta and see.  Am willing to try to go without both on a trial basis but will insist on resuming if I have any problems.  I also asked about the flu shot.  Being of a 'certain' age (LOL) and in the medical field I have always taken the flu vaccine and highly recommend it for most everyone.  Was told to see how my counts are next Friday and if everyone agreed then to have it done on an off week from chemo. All counts were up yesterday from the previous week so that is encouraging.  I thing I did not know is that the Taxol takes nearly an hour longer to run than the A/C did so after labs, seeing the NP and finally to the infusion lab it was a very long day and hitting Atlanta rush hour traffic on a Friday afternoon is something you have to experience to believe. 

I feel okay this a.m.....a little headachy but took an Alleve already and am going to be hopeful but watchful over the next few days.  Thanks so Much to each of you that wrote to me about your Taxol txs.  It means SO much more hearing it from you that are actually walking the same journey.  Speaking of that I have to tell you about my conversation with my NP  yesterday.  I casually mentioned that I had joined this forum and what a supportive/ loving/ and informative group I had found and how helpful you all have been with sharing and informing.  The NP looked me right in the eye and said to my dh and I, "oh, I wouldn't put much value in that or spend too much time there if I were you".  Well, my husband reached over and put his hand VERY firmly on my shoulder because he KNEW I was coming off that exam table.  I looked her squarely in the eye, smiled and said, "Oh, I'm so sorry, I didn't realize Melissa that you had ever suffered through bc, perhaps I should have been asking you all along how you did during treatment.  

And furthermore I have had more support/clearer and more accurate information from those angels on that board that I've ever had from this office"!!!!!!   Well, she sputtered and sputtered and turned as red as a beet and quickly got herself out of the room.....no apology mind you but did not have the guts or moxy to say anything back to me.  My husband laughed and said she probably thought she was going to get slugged and I am the most non-violent person in the world! 

Well, that coupled with some other conversations with my onc down there regarding gross mistakes has I'm sure now placed me on the top of their list for most 'hated patient'.  My response, I didn't seek it or want it but tough s.....! I'll live through it.  See, what I mean about the anger ladies?  LOL

Kaye: My heartfelt congradulations on completing your treatments but don't you dare leave us, we'll start a petition!  Some days the only thing that keeps me going is this board and your jokes just fracture me even when I'm to sick to laugh...I grin though.  :>

Geez, maybe I could keep taking steroids after my txs., find some talent somewhere and write novels.  Because this is what this has turned into.  :>

Wishing everyone a blessed and well weekend. Everyone one of you are in my thoughts and prayers more than I could ever express...yes, even on the steroids!  :>

June

Harley,

Tuesday is your last tx, correct?  I wish you lots of luck.  I hope your arm is okay.  I'm so happy you are finishing up.  Then you get your implants--you go girl--you're almost done!!!!

Have a great weekend.

Hugs, Jackie

June, good for you for putting the NP in her place. I, too, have learned much more from talking to other patients than to the docs and nurses. For example, my mom and I attend an annual brunch every October where we meet up with women from the Her2support.org board. One year we learned, from another patient over eggs benedict, that PET/CT scans do not pick up brain mets, and that all stage IV HER2 patients need an annual brain MRI. Mind you, the onc never, ever, once mentioned this bit of info. So we marched back to the onc and demanded the annual brain MRI's for my mom.

My onc, who is a bit of an idiot, told me that she doesn't run brain MRI's unless the patient is symptomatic, b/c, "Why would you want to do whole brain radiation unless you have symptoms." Umm, because I could do gamma knife on a small lesion instead of whole brain radiation on a bunch of big, nasty lesions caught late? Another bit of wisdom I learned from my bc sisters.

So after five years on the internet researching bc, I can firmly say I have learned everything I know from other patients and from reading medical journal articles. I have learned pretty much nothing from the medical professionals. So there--a big zurbert to June's NP and a big high five to June. 

Congrats to all who are finishing up chemo and to those moving on to chemos that hopefully will be easier to tolerate. I'm glad to hear y'all will be staying around once done, b/c I was afraid of getting mighy lonely, hanging around here until mid-December.

I can't stop thinking about Stacey and Jeremy, her husband, and their boys. I wish there was something we could do to support the family.  

Girls,

On the funeral home site for Stacey is a place at the bottom left to light a candle and make a comment.

Hugs, Jackie