September 2013 Chemo Group

lighthouselady

Yeah, see, there's the whole surgery thing looming. That's Jan 3rd. I would hate to risk having low WBC because I was too stubborn to go back and get the damn shot. <sigh> Hubby should be home soon and he can get the kids off the bus - I'll head back up there and see if I can get it this time. The cancer place is only 2 miles from my house... not like it's a huge deal to go up there. I'm just still ticked off about it. LOL Plus, I've been dealing with the taxol pain since Saturday night, and now I'll get to add the Neulasta aches. Woohoo.

KBeee

The surgery definitely puts a spin on it...good decision to get the shot. Be sure to let everyone there that you see know that it is not your first time there today trying to get it. glad that it is your LAST one, and I hope the side effects are mild.

70 charger...yay on the grape jelly!!!! I still cannot taste chocolate, and I have not decided if that is a good thing or a bad thing. Even though i have been walking every day, i decided to get on the elliptical since it was negative something outside. Yep...I felt like I was about 96 years old. It was pathetic, but I did stick it out and stay on it, when 2 minutes into it, I did not think I would.

raynaj

I feel so bad for you ladies still going through chemo, it was soooo awful. I think having a hysterectomy just makes sense if you are past having children, I don't see a down side to it at all. My worst fear is finishing treatment and being told I am NED and two years from now they find I have uterine, cervical or ovary cancer and to start at the beginning of all of this again. Just when your hair would be at a decent length and the fatigue starting to ease up and to think of starting it all over again, almost sends me into a panic attack.

I did a survey on another site about 6 months ago and asked all the ladies if they were sick or tired prior to their DX and everyone of them said they were more tired than usual at least 6 months prior to DX. I think the medical system should be aware of this and if a woman goes to the doctor complaining of fatigue instead of labeling her with Chronic Fatigue system or depression they should be sent for a mammo and ultrasound. It could maybe have a lot of women being DX Stage 0 or 1, instead of Stage 3 or 4.

Just my opinion

Lighthouse: Even as much of a pain it is to sit around waiting, i agree you should get your last shot. You wouldn't want to have to postpone your surgery because your counts are too low or you end up with Neutropenia in the hospital, lots of germs this time of year. Hopefully your wait won't be too long. Good Luck.

Rayna

audra67

LHL-

Made me laugh as that sounds just like my office, everyone there is 80 or 90!!!  Slurping and coughing and sputtering...germfest!!

That would make me mad too!  I got my shot today but they acted like I knew to go to infusion room, I signed in , sat there 30 minutes then went and asked what was up, she said oh just go back, so I went back to where I sit to wait for DR and saw his nurse, and asked her, then she said oh you just go to infusion room and they give it there...so I had it in the infusion room with lots of people, in my stomach , in front of everyone...interesting.  I didn't care I just wanted it since my wbc went to 2 last time...

Hoping you got yours or get it tomorrow...  the surgery will be a piece of cake after the chemo...!

Good luck!

Kbee-Cannot believe you are working out, I am so tired...

70charger- grape jelly woooohooo!!!  I had a frosty from wendys after my shot today and I can always seem to taste that....they are my faves since this began and I NEVER would've touched them before as I was so diet conscious...

alfranco

Just got back from my last chemo. I am so happy to be done with this. Now to endure a week of se and some crying.

70charger

Alfranco HIGH FIVE!! It is such an emotional charge to be done. Have a good long cry & release all that pent up emotion. Big hug ( )

KBeee

yahooo Alfranco!!!!!!! Wishing few side effects and rapid feeling better.

Audra, it barely classifies as a workout...it was so slow it looked like I was in slow motion. It was set slower than the pace I walk...and I could barely keep up. Hoping it warms up so I can just walk!

simplelife4real

Hi All,

Congratulations on finishing Alfranco.

I give myself my neulasta shot because I live so far away from where I get chemo. I'm grateful they let me do that. It's so much easier than going in.

I'm at day 6 of my first AC treatment. Last night, I threw up my dinner. I think the IV Emend had worn off. It lasts five days. The vomiting didn't last long and I had some medication that I could put under my tongue to absorb it. Fortunately, it worked wonders and in a hour, I was sound asleep. I was okay today. I've slept a lot the entire week. No bone pain from the neulasta, thank goodness!

Knightzoo, they did not do any kind of a scan of the tumor at the end of taxol. I hope what I feel is just scar tissue. That would be perfect.

PeacockGirl

alfranco, congrats on being DONE! hooray!

can anyone explain the hair growth I'm experiencing? it's like white peach fuzz all over my head and all of a sudden! I still have one more taxol before I'm done, so is this the hair that will fall out before real hair starts to come in? it certainly doesn't seem sturdy. LOL. oh my fingernails are looking yellow nasty. I have a feeling I will lose a few before this is all over (( sigh ))

70charger

Peacock, I could be off base, but the white/clear new hair will not fall out. It is new growth with chemo. I believe it has to be cut off. As the chemo leaves your system the growth comes in colored. But I could be wrong. I know I'm done chemo & my clear/whites have not fallen out.

Viji

Same here, clear, whites haven't fallen off and darker hair is growing in.

BreezyH

hi Ladies! I'm a September gal but don't get to post much ( 3 very active little girls keep me busy) but I have a hair question that may have been cover. 97% of my hair fell out but I still have stubble patches on my head! they drive me crazy! I finished AC and have started weekly taxol and read that my eyebrows and lashes will probably go but my hair may start growing back. I want to have a clean slate to work with though so I can see the growth. Has anyone razor shaved your melon to smooth? My husband and I are scared to do it ourselves because we don't want to knick my skull but I considered going to a barber that does head shaving. Anyone else? Or other suggestions? Thanks everyone for your input

Miss_Mama_Bear

Alright ladies, I will work on the cancer cure for all of us! Good to know that the extreme fatigue was a pretty universal symptom, like you said Rayna, maybe it could alert people. I remember back in May or so, I almost asked my doctor if there was some kind of test they could do to detect cancer but I didn't want to seem like I was a hypochondriac. I have anxiety on my record too, so I don't get taken seriously sometimes. Speaking of that, my onc diagnosed me with anxiety and depression right off the bat (I have access to some of my med records online) and I was wondering who doesn't cry and/or somewhat freak out when they find out they have cancer! How, exactly, are you supposed to act? lol

LHL: ugh on having to leave and go back, but yeah, you probably want to be in tip top shape for surgery. You don't want to end up catching something and spend this time fighting this off instead of just getting healthy in general. It is just ridiculous how many people are in the oncologist office at pretty much all times. I had to leave and go get my daughter (of course they were just about to call me back at that time) and then go back one time. We were there until after close-I got to see the waiting room empty, a rare site for a patient, I am sure.

I commend all of you working out, even just a little. I am not quite to the point of little old ladies in walkers passing by me, but close. The extreme muscle pain seems to be a last week before the next chemo thing. I could barely walk when I got up this morning. I suppose if I kept more active it might make it a bit better, but it is hard when it is so difficult to get active - viscous cycle! Oh well, only one more round then I will hop on the exercise bike. I am not going outside. I HATE WINTER!

CONGRATS ALFRANCO!!!

Breezy: I have shaved my head smooth with my leg razor a couple times. I was really scared to do it at first but it was really a piece of cake. I didn't nick myself at all. I would say that as long as you don't have any rash/pimple-like bumps on your head and use a good razor, you probably won't nick yourself and especially if you have your hubby do it. My "old hair" was there, just barely poking through the surface and never would grow any longer or fall out; I even tried duct tape to get it out lol. The shaving really just pulled most of it out more so than cut it, I think. My hair is growing, and has been ever since after chemo #2, but not my old hair; it was just dead in the follicle. I was worried about it potentially blocking growth because permanent hair loss can be a side effect of Taxotere and I noticed the spots where the old hair was, there was no new growth. I also didn't want to deal with trying to get the old stuff out when it really had some length to it. I *think* I may have finally gotten rid of all of it, but I just shaved a few days ago so it is too early to tell. The hair growing in all feels soft so far, not coarse like my old hair.I had a golf ball size spot that was just old hair and no new growth at all, so we will see! I will probably shave it clean at least one more time though just to be sure I got all the old stuff. It is white/clear too, just like everyone else said and soft as a newborn's. So far, I would say I have probably shaved two inches off so it is growing pretty fast for still going through chemo.

knightzoo

Congrats Alfranco!! 

Simplelife, thanks for the update.  I'm 2 days behind you on my first AC.  I did have pretty bad bone pain and light headedness yesterday, didn't even try to drive, slept most of the day (I did have Neaulasta same day as chemo so I could travel).  Today seems better, but no changes in taste and no nausea.  Today is my first day with no oral steroid and if Emend leaves today too, we will see what tomorrow brings I guess! Maybe vomiting and crying?!  Lovely. 

I have consults with BS and PS today, hope I can stay awake and be coherent.  I'm so angry that my BRAC results aren't done yet - drew Oct. 8.  Still fighting with insurance about paying. 

lighthouselady

knightzoo - I can't believe you don't have your results yet. That's so frustrating!!! You got Neulasta the same day as chemo? Wow, I didn't know they could do that. My MO said it had to be 24 hours after chemo finishes. I hope the nausea stays away! Emend is a miracle drug as far as I'm concerned. :-)

No working out for me. Honestly just walking from one end of the house to the other leaves me winded. I know I'm supposed to be getting in shape for surgery, but it ain't happening. I'm SO tired. This last treatment is kicking my butt... and I think getting the Neulasta 3 days late isn't helping. I am hurting everywhere today. I guess it's to be expected, though, I mean - I had eight rounds of chemo! Definitely cumulative and this is the most exhaustion and pain I've felt so far. Thank goodness there's no more after this!

Congrats alfranco on finishing!!!!!!!!!!!!!!! :-)

knightzoo

We had to get special permission from my insurance to do Neulasta same day, but my MO said more studies are showing that it's just as effective, and helpful for people traveling long distances for treatment, so he was fine with it.  I asked about Monday and he said no just do it same day.  My insurance is really pissing my off on the results.  I figured these consults in December would be a slam dunk to have the results.  Hang in there on your last round of side effects LHL, the light at the end of the tunnel is getting closer!

Miss_Mama_Bear

Oh yeah! I have appointment with the RO and the PS AND lab work all tomorrow! If anyone has any ideas of things I should ask, let me know, I am going to have to make lists for sure (if I find time) or I will likely be mixing them up lol

This week is shaping up to busy busy busy. I just looked at my calendar and realized I have ONE day only to do Christmas shopping, for a grand total of 2 hours! I have class tonight and Thursday (and have to study study for these tests), 3 doctors visits, lab work twice, Christmas pictures, a HUGE shopping trip for about a dozen meals that I plan on putting together and freezing, a visit to the mall and Santa, school Christmas party, church and chemo all before the kids are out for school in ten days. Next Tuesday is the only day I can do it.

kjsimpson

Alfranco,
Congrats on being done!!  I cannot wait to emphathize with your joy.  ;-)

My big achievement has been to be at work for four straight work days!  Yeah!

I have been shaving my head about every 3 weeks with a good razor and shaving cream.  Hair that is coming in is nearly translucent or white and is very very fine.

How long after the last chemo will real hair start growing back in?  I'm telling people that I expect to have a crew-cut's length by June.  Am I being optimistic if my last chemo is December 20th?

 

 

Miss_Mama_Bear

I just found this video. Extremely informative for those of us facing a mastectomy. Such a brave girl for sharing!

http://www.youtube.com/watch?v=Ve5Ho8i1MI4

Miss_Mama_Bear

Hahahaha! And I just watched another one of her videos (chemo #4) and it had me CRACKING UP! I suppose I should study for my test now though since I only have an hour.

KBeee

Mamastewart, one thing to ask the PS is if he/she fills during surgery (if you are getting TEs). mine did not, and I seemed to have much less pain and a much easier recovery than some of my friends who were filled pretty full during surgery. I would rather an easy recovery and go for a few extra fills. I had no problem wearing a sports bra and padding it a little for the first few weeks. I got cheap sports bras from wal mart that were so elastic, I could step into them. I took the removable "cup padding" out of all of them and would just put 2 in...looked fine and was comfortable. i would also ask how long after chemo you will have surgery...want to assure counts are good because you definitely do NOT want infection to be a problem. i also just asked how my body type played into how the surgery would go...i liked that he was able to explain how and why he would do things a certain way because of how i was built. it made me more confident that it is not a one size fits all approach...if that makes sense. Good luck at your appointments and on your test.

Kjsimpson, being at work 4 straight days is a big accomplishment... I hope you reward yourself appropriately.

josgirl

Ladies, So much to catch up on.  Strength and hugs to those feeling side effects.....we are coming up on the end here....

I just wanted to share with you all some info my onc gave me at my Tamox meeting.  He is heavy into the new research side of oncology so has a lot of .... shall I venture cutting edge info....Anyway these are items that surprised me after all the research I did here and other places:

For premenopausal women who are still getting their periods tamox does not pose a risk of endometrial cancer (because you are continually shedding the lining).  

Tamox is different per brand name / generic but not the drug compound.  The differences come in the additives and some women will react to the additive in the brand and not the generic and vice versa.

Tamox can cause menopause symptoms but is not menopause .... ie most women still get periods (although may take a while to come back after chemo and may not be like they were before)

Still can get pregnant on Tamox so need a non-hormone form of birth control (copper IUD or condom).  If you get preg while on Tamox it can be very bad for the fetus.

Tamox symtpoms usually burn themselves out - that is you may have them for the first few months and then they will slowly go away.  He said since I have been having hot flashes from the lupron that I will probably not even notice a change (as that wears off and Tamox builds up) and then they should slowly get less and go away. 

The only common side effect is hot flashes due to tamox interference with the estrogen that somehow regulates your internal body temperature.  The other side effects (dry/oily skin, weight loss/gain, etc) seem to be in equal numbers and just like the pill will do equal and opposite things to different people (I was less moody...go figure)

The benefit of 10 years versus 5 has not really been validated to his satisfaction.  He says the 10 years may not be that significant but since I will def be on it for 5 - we will discuss an extension later.  He did say something interesting that in that time there may be a test (similar to the oncotype test) that will look at your tumor's biology and see if you are going to benefit from the 5 extra years.

He said I need to be on tamox for a minimum of 2 years before coming off to have a baby.  There is no magic per se in two years but the majority of local reoccurences happen within two years.  So surpressing the estrogen (Tamox by interfering with the estrogen receptor) is especially helpful for this period. 

Metastatis - this is the scary part for all of us.  As far as I know the first / major places breast cancer 'infects' are the bones, liver, and brain.  I am sure it can get to your ovaries and other parts down there but from what I understand the majority of those cancers begin on their own and would be treated as new primary cancers.  The risk factors for those are different than BC and I am told that the only reason to have them removed (regardless of hormone status) is if you are BRCA + and therefore at a higher risk of ovarian cancer.  Estrogen is in our fat cells and brain as well as other tissues so removing the ovaries does not prevent estrogen in our system.  And as I understand after menopause, the ovaries are prodcuing minimal if any estrogen (thus the reason for the hormone replacement theray in the first place).  These surguries come with their own risks and while there are certainly valid medical reasons for removal, I would encourage a lot of research for those who are not at a higher risk (not BRCA+ or family history).    Another way for premenopausal women to reduce the estrogen while on tamox without a surgical removal is to go on Lupron.  This surpresses the estrogen made by the ovaries and essentially puts you into chemical menopause (menopause symptoms are much more pronounced than chemo or tamox - as I can attest!).  Lupron is reversible - a few/some months after you go off of it your body will come back to normal.  Something to think about before undergoing a hysterectomy.  

If Tamox side effects are really more than I can bear (and I have tried switching brands/generics) then I can go on an AI as a premenopausal woman but I would have to also go on Lupron.  Otherwise some pre meno women will get large cysts in their ovaries which while not life threatening are painful and require intervention.  But at least I have some back up if Tamox is unbearable....cross that bridge if I come to it.

Also my onc will send me this study on flaxseed and its contribution to cancer prevention.  He said that new studies are suggesting flaxseed works with Tamox to reduce the estrogen load in your body.  I will try to get the study on this.....

Anyway if you get to the end of this bravo!  But I just wanted to share what my onc told me with you ladies. It is so interesting what differences and opinions there are between our oncs and I have asked my onc many questions based on the discussion here.  Thought it would be good food for thought for you.....If I am not clear or wrong on something please let me know!

MAMASTEWART - finished my last final today and woohoo - I am so drained but for a month I will finally have guilt-free free time (if that is possible with my 2yr old!).  BTW package is on its way!

audra67

josgirl!

That is AWESOME information!  I am wondering how they look into our tumors biology in 5 years?  Do they save it that long? The actual tumor slices??  Do they just use what info. they had from these tests done now? 

josgirl

Audra, I think it depends on where you got your surgery done (mine was a t a big research / univ hospital and my onc is affiliated with them so I assume he knows they will keep it for that long.  But I do think they keep samples for a long time unless you specifically tell them to destroy it (sometimes it will be on paperwork you sign at surgery...)

I wanted to get all that info down somewhere in the worry that I may dump the info with all the studying for finals I have been doing!

VintageGal1111

BreeezyH

sorry can't help ya! I did A&C & just had my 4th (of 12) Taxol. I have a thin micro mini layer of stick up stubble on a good portion of my head, never wentt totally bald. And I wonder about that.

I do have a couple missing areas of eye brows & one spot in my lashes that's gone but that was with the A&C.

All the best, let us know how you do!?

VintageGal

knightzoo

So I had my consults today (PS and BS).  So glad I felt 100 times better than yesterday.  While the MRI results I had last week were awesome, the mass on u/s (and that we can feel) is larger than ideal for lumpectomy, even if it is necrotic tumor tissue, it'll come out.  Since I was leaning towards DMX anyway, that's what we are doing (with TE). And BS agrees that the fact that it wasn't noticeable on mammogram is another plus for MX.  Should get my date by the end of the week as they coordinate with the PS.  I am going to meet with RO next week, the BS said that I may not need rads if less than 3 nodes are positive and there is no tumor outside any node capsule.  I was not told of that possibility before, just "in nodes, need rads" - so will ask that question to RO.  So much info, I think my husband's head was ready to explode!  I'd read a lot about the options, so it wasn't so overwhelming to me.

lighthouselady

knightzoo - You sound like you're at peace with your decision. That's great. That would be awesome if you didn't need rads!

SouthernGirl1974

had ultrasound today and radiologist came into room and told me that they could not see the mass any longer on the ultrasound he to,d me if I was going to have a Lu,or to y it would need to do another mammogram so they can locate the Clio that was put in however I told him I am having a dmx so he said great no need fir another mammogram

KBeee

Josgirl, Great info; thanks!

Knightzoo, It sounds like you have a great plan in place moving forward.

Anyone else have cravings?! It must be hormonal or something. I have not had cravings like this since I was pregnant. 2 weeks ago: ramen noodles, last week: egg salad, this week: grapefruit. I have eaten 4 grapefruit today! I want another grapefruit, so it'll probably be 5 before I go to bed!

kjsimpson

KBee,

YES! To the cravings.  Noodles, roast beef, and baby oranges (tangerines/mandarins).