Starting Chemo October 2012
Comments
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Well the doctor's office closed with no receipt of my test results by the end of the day. Hopefully it will arrive Friday. Have an afternoon apt. I hate waiting. I did ask my onc if waiting was a concern for my treatment and he said not to worry. With a grade 3 I do worry thinking every day it could be spreading going untreated. My margins were clear on the lumpectomy and the one sentinel node was micrometastic......
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Schoolmom- I found out my dx on June 26 and had surgery July 30th, back in for ALND Sept 11, and chemo started on Oct 12. And mine is grade 3 and Her2 positive. Very aggressive. I think waiting even another week won't make a difference.
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MsTori- I am going to ask about the her2 status since I never saw anything indicating positive or negative. I heard positive was more agressive so not sure if it goes hand in hand with the grade 3.
Thanks for the encouragement.
Fortunately I have tons of sick days so I dont have to worry about going back to work until after Christmas. I work at a PK center and I doubt I would have the energy during chemo to be there.
Will check back in tomorrow hopefully with results.
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I don't understand why I am so exhausted when I haven't even started chemo. All I do is sleep. Any thoughts?
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I just went to a Look Good Feel Better class! I don't usually wear any makeup but may need to soon so it was fun to get some free make-up and learn some tips. The best part (for me) was that we got to try on wigs and hats and take some home for free. It was great to try on the different wigs in a supportive environment with other people who are going through the same thing (felt less self conscious). It was helpful to get advice from the other ladies on which wigs look good on me. I don't really like any wigs cuz I just don't think they make me look like "me", but since these ladies don't know me, they just chose what they thought complimented my skintone and features. I ended up choosing a wig very different from my original hair and think it might be a fun look. One lady liked her wig so much that she is actually excited to be able to start wearing it (she hasn't lost any hair yet, but thinks she looks better with her wig than her real hair!) I've buzzed my head down to 3/4 inch, and I think the main downside from trying on all the wigs is that the pressure and rubbing seems to have rubbed off a lot of hair from the forehead area of my head - balding there now! My buzzed head is looking awful now, so I think its about time to do the full shave
Guess its not AS heartbreaking now that I already look terrible up there. At least I have a fun wig look now.Just wanted to share my LGFB experience and encourage you all to go to a class if there is one offered in your area.
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Wow! I'm gone for treatment for a few hours and the board really fills up with messages! Love it!
First of all, thanks to all for the 'big pockets'! I thought about all of you a lot while I was having my treatment. It went well except they had to stick me 4 times to get an IV that wouldn't infiltrate. So odd because I have amazing veins. Oh well. The cold caps are working fine (another hour and a half to go). I also sucked ice and managed to ice my fingers. As PatinMN says, that's much more painful than the caps once you get used to them.
Welcome Schoolmom! Sorry you're have to join but delighted to have you!
Poke - So glad you're feeling better. What a rough patch this has been for you.
LouBar - I talked with my MO. She finds the article perplexing. She says that chemo is most effective on actively dividing tumor cells. It's why they recommend refraining from antioxidants - like Vit C - when one is having chemo. My daughter sent a couple of other articles. My sense is this is not ready for prime time yet but if you want to try it, why not!
MrsCich - glad to hear from you. Take it easy with work.
Hugs to all!
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Fight4two- the next FGLB class is Nov 6th.....4 days after my 2nd chemo tx. I'm praying I feel we'll enough to go. I signed up for up.
Trinity- give your self a break. You g
Had surgery not that long ago, plus all the initial stres of this can take its toll. Listen to your body and rest. Make sure to eat well, good protein, all on chemo should be taking in 80-100g, so I'm told. And plenty of fluids. Build yourself up.
School mom- yes! You need to know our Her2 status. But my guess is, is thatnitmwas negative. Because, they usually won't do an Oncotype on Her2 +++ patients. It's a given that we will get chemo. -
loved the lgfb class... they chose me as the model lol
when put on the wig ... i laughedso hard! i looked silly lol
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I signed up for a lgfb class for Nov 12....thanks for the headsup. I am so glad to hear about the wig section! I was browsing wigs online and it is so hard to determine colors and styles.....still thinking about coldcaps but waiting for the chemo decision and drug choices today.....check in later
Everyone have a good restful day. -
I go to LGFB next Thursday and two days after A/C #2 so I too hope I feel well enough. No hair loss yet but I imagine it will go by then. Our young adult kids are having a pumpkin carving party here Sunday and I was thinking that might be shaving my head day too. None of them think that is too weird. It is Halloween after all. I am also going to the piercing/tattoo shop where I had my nose pierced two years ago to get them to change to a small gold star I love. I don't trust trying to change it myself right now with the chance of causing an infection.
Still not planning on a wig and have lots of choices from my order from headcovers.com
Have a good weekend everyone and for those on the east coast, I guess you will have battened down the hatches!
Marian
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My LGFB class isn't until the 14th. Now chemo #3 is scheduled for that day too so I'm hoping they won't overlap! Today I get my first Neupogen shot and teaching class to continue the shots at home. Not looking too forward to it and the possible SEs. I'm feeling not bad for day 2 so far this am but the red steroid cheeks are still with me.
Hope everyone has a good day today! One day at a time. :-) -
halfcan, I hope you are like me with the Neupogen - it will be #6 today and other than some pelvic pain yesterday which has completely resolved (to the point that I let my son take my early Physio appt, this morning, scheduled long ago). I walked a bit stiffly yesterday AM but did get the walk in and took 2 Tylenol a couple of hours before yoga and after yoga the pain was gone and none today. I have had a nurse friend who lives nearby do most of the injections but she supervised my neighbour Wed. night as she will be away for a couple of weeks. I know I can do it myself and may just try it sooner than later. My only concern is tensing up.
I still look at those steroid cheeks as rosy cheeks! halfcan do I recall you posting that you take Zofran after chemo too? I guess the different chemo drugs require different anti nausea protocols too. Apparently it may be the cyclophosphamides that were the culprit for my diarrhea but will be asking the MO on Monday about it.
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Halfcan- good ol taxotere and rosy cheeks! Lol. I was so flushed the day after...my cheeks and my chest! I freaked out and called my MO who said it was normal. Lol!
Marianeliz- is neupogen like Nuelastra? To increase WBC count? How come you take so many? I take the Nuelastra the day after chemo and that's all. But I have crazy bone pain, mainly in my hips and thighs.....with taking an antihistamine. I can't take Motrin, and my MO doesn't want me on Tylenol during nadir,so....?? I mean it only lasts 2-3 days, but ouch! Wonder if yours is the same.....and smaller dose over days to help decrease SE. ? -
mstori, in Canada unless you have private or extended insurance (and even then halfcan was denied) Neulasta is not covered. Here in British Columbia, what we have is FairPharmacare which is income based so a deductible. Then we have what is called the Victory Program sponsored and copayed by Amgen so even though most of us will pay some it is manageable for our family at least. the Neupogen does the same thing and basically is the same (both are made by Amgen) but must be cheaper. Neulasta is one injection as you know whereas Neupogen is 7 subcutaneous injections each two week cycle. Some protocols do it 7 days in a row but mine is given starting day 2 and every other day. S/E same it seems. I think I will start doing my own when my nurse friend goes on holiday - I am an old nurse and have done lots of s/c's.
BTW, my MO friend in Nova Scotia says Neupogen (Neulasta never covered) is only used if WBC drop as the province I guess just does not have the budget!
Interesting about the tylenol - I did take 2 yesterday when I had the only bone pain I have had. Now I will ask my MO on Monday if it happens again what to do. But I am crossing my fingers it will not happen.
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pls ask your nurse about a foundation called victoire ... im not sure if its only in quebec but...
i am on the goverment insurance plan and three shots costs me 60$ (down from the 500$ it actualy costs) the foundation victoire is reimbursing and paying for all futur costs
they also help ppl on pvt insurance
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Back from needle teach and first Neupogen shot. All went well and didn't feel a thing. I get 7 injections ... 1 each day in a row but know some do it every other day? I am on 3 week chemo cycles and don't know how they decide the Neupogen frequency.
Yes Marian...I get Emend 3 pak and Zofran thru today. Then I also have another script for breakthrough nausea if needed.The Neupogen is cheaper but as effective I think...just more inconvenient needle pokes. After two special authorization requests with extended medical they finally approved coverage so they pick up to my max on Pharmacare and then rest is on Pharmacare. It worked out very well for me at $30 per cycle of 7. I was told Tylenol if I have bone pain but to check my temperature first and not use it if any fever at all. The nurse knew nothing about the Claritan trial. Will see how this all pans for this cycle and go from there. -
Marian- thanks for the info. That explains the difference. I think I am glad to just get it over with in one shot. Sure wish you ladies could do the same. Just such a potent shot. I am a nurse as well. Dialysis specialty and of course when I became the patient, seems some knowledge flew out the door! Lol! Blank stare, deer in the headlight look sometimes. But still can maneuver the healthcare system and know what needs to get done.
Yes, he gave me oxycodone which helps, but knocked me loopy at times. But said to take temp before each Tylenol if I do take and limited me to 3000mg in 24 hrs. I guess because it puts the extra stress on my kidneys.....my chemo and Tylenol is excreted through kidneys. -
Halfcan - how did they show you to inject the shot? My nurse told me to insert the needle at 90 degrees and push the whole needle in. I find this painful, but even more painful is when I actually squeeze the drug in. I'm hoping you learned a different method since you said you didn't feel a thing! I still have a huge bruise from one of the injections!!
Marianelizabeth- watch out for that 7th shot! I know everyone reacts differently but I felt minimal bone pain from the first six but about 12 hours after the seventh, I felt very intense pain I wasn't prepared for!! Fortunately for my 2nd round I expected it and took pain meds before the 7th shot pain took hold!! Hopefully this doesn't happen for you! -
Gosh! I'm jealous! Our LGFB class didn't have any wigs or hair pieces at all. Not one! They had a bunch of t-shirts with the neck & sleeves removed and showed us how to tie them into turbans (they looked like . . . well . . . crapola). No scarves, nothing else for the hair, just t-shirts. They did say we could drive an hour to the next town over if we wanted to look at the free wigs. But we had to make an appointment and they are only open from 10 to 3 on weekdays. Kind of hard for those of us that are working and taking a lot of time off already for surgery, chemo, etc.
The bag of free make-up was sure fun, though! I've never worn make-up but am going to have to take up the habit in the next week or so.
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Well ladies....I got my oncotypedx results today and they were 21. Only 13% chance of recurrence with Tamoxifen and node negative (I had one sentinel w/ micromets). The onc and I went piece by piece through my pathology report. Lumpectomy, 1.2 cm tumor, 1/3 sentinel nodes with borderline micromets, grade 3 cells. I knew there were good and bad things there. Ultimately with hormone therapy in 5 years it is 5% and with chemo and hormone it drops to 3%...minimal benefit. At 10 years it is 10 % with hormone and drops to 6% with chemo, 4% benefit. At 15 years it is 13% with hormones and 9% with chemo (drops to 7% with 6 rounds) 4-6% benefit.........so I decided chemo. Four rounds of taxotere/cytoxan to start with. Then 5-6 weeks of radiation. and then 5 years of hormone therapy. What do you all think?
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Schoolmom-I would def get a second opinion with all your information available now. Really, you have time. And your doctor should be fine with that. Don't look back and wonder what if. Then, if the second opinion coincides, go for it. But why put toxic chemicals into your body unless you absolutely have to. Did you have a BRAC test done?
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Am I the only one who didn't want Neulasta? My white count was nonexistent this week, but it bounced right back. Just was careful with hand washing as usual and monitored my temps (all were normal). I don't want anything I don't need, and I told my MO how I felt about it before we started treatment. Why have your MOs required it? Just out of precaution? Just wondered, as it seems most are doing it.
Hope everyone is feeling well today. xoxo -
Schoolmom: With nodal involvement and grade 3 cells I was surprised at your recurrence percentages. They seem quite good (low). I agree that you may try to seek second opinion. Could surgery versus chemo and radiation reduce your risk of recurrence I wonder? Not that you probably want more surgery, I just am curious. I hope you find clarity and confidence in whatever you decide.
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Schoolmom - your plan sounds very reasonable to me. My oncotype was only a 5 but I had major node involvement (one was 3+ cm and outside the node itself). I'm doing 6 rounds of Cytoxan/Taxotere (or 4 if I can't handle it anymore).
Poke - I did not do Nuelasta either. My doc said that with 3 weeks between my blood counts should rebound without it.
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fight4two-yes it was 90* and all the way in. Make sure to grab a wide handful of body and dont push in too slow or like a dart. The trick if it hurts going in with meds is to slow down pushing on the plunger. I for my first shot in my belly. Hope something here will help you for next time. Hugs
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My MO wanted me to at least have Neupogen for the Taxotere treatments as they are difficult and aggressive. Maybe age has something to do with suggesting it. I know I had gums breakdown for 8 days and it was rough. Hoping this time will be better.
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MsTori, the new Tylenol restrictions (3000 mg/day) are because of potential liver toxicity. Used to be 4000 mg.
Schoolmom - Second opinions never hurt but I'd be inclined to go with the chemo given your Oncotype score and nodal involvement. Glad you and your MO went so carefully through the report.
I originally asked my MO about the neulasta and she was going to hold off. When she ordered it, I didn't ask why. Assumed it was because I'd just gotten through a readmission with an infection that required 5 days of IV abx followed by another 10 days of oral abx.
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I did my Neupogen tonight myself in my belly with my nurse friend supervising. It was fine. I suspect all of us are getting Neulasta or Neupogen for different reasons. For me I believe it is because I am getting chemo dose dense - every two weeks because they want it into me due to the fast growing aggressiveness of my cancer. WBC do not have such a good chance to bounce back in the shorter time frame.
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MsTori- I know the 21 score is in the int. range, but the grade 3 and node involvement made me think chemo. I know it is only 5% advantage....but I don't want this coming back....
Poke - glad you are feeling better...you gave us a scare. By surgery, do you mean a MX ? Not willing to go through another surgery. My mom had Mx with all nodes removed and 30 years later she suffers through lymphedema etc. (86 years old). At age 59 the surgery bothers me more than the chemo.
BethBV- the doctor said 4 rounds instead of 6 since it is a borderline call and not obvious chemo.
30124- we went through the report and it was great knowing what all the numbers meant. I apologized for doing so much research but he said he was glad I had so we could have an intelligent discussion and make a decision together. I told him that with the node involvement and the possibility of cells having gone elsewhere....and then on top of it being grade 3 ....they would be agressive. I actually told him..."we have to do chemo" and then he said, 'yes, I believe we should'.....
If I get a second opinion....and it is different, then I need a third to get a majority decision....
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About the neulasta, my MO uses it with everyone. But I thought it was a good idea considering I have a 4 year old bringing home preschool germs every day! I don't want to spend the winter in the hospital fighting off childhood illnesses!!
Even with the Neulasta at my first session, my nadir lasted a few days (I think because we delayed the Neulasta over the weekend, rather than doing it the very next day). I got a horrible skin infection from a tiny little ingrown hair on my leg. Seriously, within 2 hours it went from looking like a little pink dot to looking like a cobra had bitten me!
A friend of mine in Canada didn't use the Neupogen because of the expense, and she kept her WBC count up fine the whole time without it. Different chemo regimen. For me personally, if your chemo doesn't decimate your WBC count, I think it's fine to skip the shot. But since my treatment does kill my WBC, I think the Neulasta is a good idea for me.
I had chemo #2 on Thursday. I'm trying to stick with all the things I learned the first time around to help control my SEs. I had a really rough time of it after treatment #1, so much so that he wanted to lower my Taxotere this time. I said no! Let me see if I can do it right this time. I don't want this stupid cancer coming back because of an unintentional under-dosing.
Hope everyone is feeling well today. For those with complete hair loss, how are you keeping your head warm while sleeping? I've still got a bit of hair, but not enough to keep me warm. I'm trying out various caps and hats, but nothing seems very comfortable to sleep in yet
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