January 2012 chemo

Janetanned

Annie - Hope you are resting comfortably!  Having the port out must feel good!

Sleepless - Sounds like you put a lot of thought into your decision.  I know it was not easy.  I just finished rads, but I didn't have much of a choice with 4 nodes involved.  It went quickly and wasn't so bad. I hope it did what it was supposed to do.

Jenn - The time will fly by and before you know it, you will be done.  Fortunately, it is your right side that will receive treatment and your heart will not be in the field.  My RO was a little concerned about planning to avoid heart damage.  My left side was treated.

I saw my MO today for my chemo follow-up.  I will start Arimidex next week.  I will also have my port removed in a few weeks.  My dexascan shows some mild osteoporosis so I will need to keep an eye on that situation. Arimidex can cause some bone loss.    Instead of taking daily or monthly meds for this, my MO suggested that I consider a yearly medicine (reclast) delivered by IV.  I did that today.  I will also be seeing a PT in two weeks to be evaluated for LE.  Soon there will be nothing left to do other than keeping my fingers crossed and getting on with my life.

Jennt28

Got a new wig today since I'm pretty much giving up on my hair coming back well enough to go without. The style I got is the same as I used to have a few years ago before I grew my hair long. Feels so like "me" :-)



http://www.facebook.com/photo.php?fbid=10150866967446560&l=822859ca15

http://www.facebook.com/photo.php?fbid=10150866966566560&l=7794021011



Jenn

Janetanned

Jenn - You look great! I love that wig.  Do the bangs bother you?

Jennt28

We call it a fringe :-). No, it doesnt bother me because my other two wigs have them too.



Jenn

JoyceNYC

Love the wig!

Denise-G

Jenn - JUST LOVE the wigs.  I am a fringe/bang girl, too!  I have to get a real short wig now in case my hair ever does get ready to go topless, I can ease my way into it!

WOO HOO, today I discovered eyebrows and little eyelash stubs!  Can't see any of it, but I can feel it!

How is everyone doing in the hair department??

Jennt28

That was my theory Denise... I have worn my wig every day and always at work. When I go in to work tomorrow the people that don't "know" will just think I got a haircut :-) Then eventually, "if" my hair ever decides to fill in enough to be fit for human consumption those same people will just think I made a weird haircut decision at that point ;-)



Jenn

Janetanned

My hair is slowly returning.  My last chemo tx was 4/13.  So I'm a little over 2 months pfc.  In my house I go topless.  I'm not brave enough to venture beyond without a wig.  However, I think in a few weeks I'll have enough cover to go topless.  I'm on summer break now and plan on returning to school in September wig-less.  I sure hope so anyway.  My eyebrows and eyelashes are growing back nicely.  Unfortunately, facial hair is also showing up.  I'll need to take care of that soon.

Kitchenella

I just finished my last Taxol on Thursday.  I'm going to continue to shave my head untill the hair coming in thickens up.  Since, as an Jewish Orthodox married woman I alway cover my hair in public and most of the time at home so how I look to others is not an issue with me.  I've always wanted really short hair but hubby resisted the idea.  Now that I've gone through all this he seems to be OK with me keeping it short .  I hope he means it when he says it is sexy and not just trying to make me feel good.   

Jennt28

Kitchenella, what do you use to cover your hair normally? Wigs or scarves?



Here in Sydney there are two main "hubs" inthe city where jewish people tend to gravitate close to live because that is wherethe two main synagogues are. I wouldn't get a second glance wearing a wig to the shops in either of those areas :-)



Jenn

Kitchenella

I prefer the cotton berets mainly for comfort.  My husband loves the scarf look.   I also like the scarves but never got the hang of the wrap around tie thing.  When I do wear scarves I find that I have to re adjust them periodically and it is more difficult than re adjusting a beret.  I used to have a nice wig I wore to fancy parties and when we had to go as a couple to gaherings involving my husbands work or other places where a hat or scarf would look out of place.  Everyone always said I 'look so much younger' in a wig but at my age I figure I'll be happy I'm alive and not worry about looking young. ;-).  I've always been more practical than stylish regarding clothes etc.  Someday I'll figure out how to post pictures here and put up a couple of me.  

Gayle56

Hair is starting to grow back.  I haven't seen my natural color in years so it should be interesting.  It looks like it is coming in very salt and peppery.   There isn't enough to go topless yet at work but I hope when I go back to school in the Fall it will just be very short and I can get rid of the scarves.  I never felt comfortable in a wig so I have been wearing pretied hair coverings.  I have them in all different colors and patterns.  They are very comfortable.  After going through all of this, I am into comfort.  I could care less what anyone else thinks.

Gayle

Kite

Im with you gayle, I gave up caring. My hair has started to grow in pretty nicely. It's growing evenly and is probably 2 inches from root to tip. It looks the exact same color and isnt' curly. So much for having different hair! When I shaved it off I was so embarressed by how it looked and now Im sportin it like a new hair do!

My implant surgery is in 2 weeks. I am looking forward to having these expanders out. It's so nice not to be sick from chemo. I gained about 7lbs and Im working to get it off. Did anyone else gain weight? I think mine was mostly from not giving a rip what I ate and adding ice cream to my regular diet.

JoyceNYC

My surgery for the removal of ovaries & Fallopian tubes is next Tuesday so I"m back to running to doctor's appointments to get medical clearances.  I had forgotten so quickly how much I hated all those doctors' visits!  This surgery will be outpatient & laproscopic so the healing should be relatively easy.

Kite, I gained 25 pounds since my bmx in mid-November -- and I barely ate for 5 weeks!  I've only taken off 7 pounds so far. It's hard to get into a regular pattern of eating now.

My hair is coming in spotty and shows the wear spots from the wig's grippers. I'm looking forward to going wigless to give those places a chance to grow!

Walking with all those still in treatment....

NancyHB

Hair, hair, hair...never thought I'd be so excited to see hair on my head (or other places, to be honest!)  I started with baby-fine white hair, but my DH noticed a number of really dark and thicker hairs coming in, too - so I've got the salt-and-pepper thing happening.  It's all over and about half an inch (though I have a few rogue hairs that are super long!)  I stopped wearing any head covering about a week ago, and I feel great about it.  In fact, I lead a two-day adoptive parent training in Traverse City this weekend and went "topless" the entire time - and no one seemed to notice. 

Yesterday was 10 of 30 rads - 1/3 of the way done!!  Oh my, it goes my *really* fast, I can't believe it.  So far no changes to my skin or breast - makes me wonder if they're actually turning the machine on.  :-)  My RO says everyone is different and some have skin problems right away, others get mild sunburns and that's all.  I'm hoping I fall into the latter category.

Any residual chemo SEs seem to be all but gone, including the fatigue (which I'm not having much of on rads) and neuropathy.  My fingernails are returning and thanks to the Biotin seem to be stronger and looking better than before.  Chemo brain seems to have abated for the most part, but I will admit to a true, serious short-term memory deficit.   It's frustrating but I'm working on ways to deal with it.

Yesterday I found three eyebrows breaking through, and all of my eyelashes are coming in, although they're just little stubbles right now.  

Had my port removed last Thursday.  They covered the little pad with a clear plastic patch that, apparently, I have developed an allergy to.  I am now fighting an infection from the blisters and peeling skin that happened when I removed the patch.  Ugh.  

I feel like life is moving forward...but I'm kinda dreading the end of rads and "active" treatment.  This has been my life for so long, I'm not sure what I'm going to do when it's all over with.

Janetanned

Yay Nancy - Almost done!  It has been a long strange journey!  I know what you mean about being done with active treatment!  I'll be starting Arimidex this week some time, have my port out in the next few weeks and then be on my own.  Kind of scary!  I'm scheduled to see different drs every few months, but it still feels kind of weird not to be heading over to the Perlman Center for some sort of appointment, surgery or treatment.  I'm going to miss the coffee (not)!

Joyce - My sister had the same surgery this time last year and said the recovery was very doable.  She is a pretty active person and it didn't slow her down too much.

I gained a bunch too.  I am officially off for the summer and finished tx, so it is time to start exercising!

PCBarbie66

Nancy~I developed and still have an allergic reaction to all tapes now.  5 weeks out of Taxol going on 6 this Friday and I still have a problem with all adhesives..oh well that is the least of my problems.

Tamoxifen anyone??  I started last week Friday and the only SE so far (5 days in) is a pain in both hands on the meaty part of the palms...like I tried to bang something in, when I should have gotten a hammer??  only example I can think of right now.

Barb

PCBarbie66

Tamoxefin/Hormone Bloodwork~

I had bloodwork done by my OBGYN to find out where I am now (Hormonoly). before the Tamoxefin...I was Pre Metapausel before Chemo, like clock work.  Now, after Chemo is done...I am Post metapausel!!

MY Estradiaol is 7.4 (Below 20 is Post) and the FSH Serum is 89.2 (19.3-100.6 is Post).

This bloodwork was done 3 weeks after last Taxol and 2 weeks before Tamoxefin, but I JUST got the results now!  Wonder if I'll have to stay on this drug now???

Barb

Gayle56

Nancy I go to the MO on thursday and probably will be joining you on Arimidex.  I didn't have much fatigue during rads or skin problems but the last week the skin started and was the worst for two weeks after rads was over.  Now I am a month out of rads and have been having much more fatigue than before, go figure.  I guess it will all straighten at some point.

Gayle

annie3310

I wanted to share my news with my forum peeps. I got the pathology results today from last week's lumpectomy. No node involvement, clear margins, and only 3 mm of cancer left in the tumor site, which of course is out of me now. The best result would have been the complete pathological response, but hell, I'll take this. Tomorrow I call the radiologist to start on that process, as well as make a follow up appointment with my onocologist. But the end is in sight.



I should be jumping up and down with joy, and I am happy. But I'm also strangely numb. What's that about?

Annie

Janetanned

Gayle -  Did you have a Dexascan before Arimidex?  Apparently this drug might cause some bone loss.  My scan showed some osteoporosis, so I will need to keep a close watch on my calcium and vitamin D intake and increase my weight-bearing exercise.  I will also take reclast - once a year iv medication for osteoporosis.

 Barb - I was put on Aimidex instead of Tamoxefin since I am post menopausal.  While Tamoxefin is good for bone health it may also cause blood clots.  I have some blood issues so Tamox is not for me.  My MO says we still need to block the hormones created by other glands even though the ovaries are no longer functioning.

Janetanned

Gayle - Did your skin get worse after rads? Today marks one week from last rad tx.  My skin looks worse than it did after the final tx.  The skin under my breast is really annoyed.  I might call my RO tomorrow.  I just want to be done with this!

Annie - YAY for the good pathology report!!!!!  Rads isn't so bad.  It is time consuming and a bit weird, but not at all related to chemo.  At least, that was my experience.  I suggest that you buy yourself a few cheap hospital gowns since you will be doing alot of changing in and out of them (at least 28xs).  I found my own clean gown felt so much better than the ones provided by the treatment center.  I found some on ebay.  Amazon has them too.  Or, I would be happy to send the 3 I have (only used for 2 weeks). PM address if interested.  They are a bit big, one size fits all.

annie3310

Janet - your so generous to offer! Maybe someone closer by or in more need can use them. I'll pick one up from Amazon. It's a great idea, though. I curse every time I put on a hospital gown. They are designed in the most insane way, as if you need special training in order to tie them correctly. Doing that 33 times in a row will drive me right over the edge!



Annie

JoyceNYC

Annie, congrats on the good report from your surgery!

Gayle56

Jane    I am going for a Bone Density Test on Friday.  Osteoporosis runs in my family, my mom has it so we will see.   My skin held up until week 5 (my last week of Rads) and then the skin under my breast was the worst.  The skin peeled and was pretty raw for 2 weeks and then

it did heal up.  

Gayle 

NancyHB

Annie - Congrats on your wonderful news!!!  And thanks for sharing with us.  It's so inspiring and uplifting to hear good news from our sisters!

I'm almost half-way done with rads - and already getting a little weirded out.  Like you said, the end is in sight - but then what?  I consider myself a girl who "goes with the flow" and lives in the present (a product of my years of yoga) but the thought of not being "in treatment" scares the sh*t out of me, and makes me a little sad.  My life has been so entirely consumed with this for so many months that ending treatment is almost like losing my job.  I'm happy to be alive and healthy, but still needing to grieve, I guess.

Jennt28

Yay Annie!!!!!!!!!!



Interesting to read how we are all moving on with different treatment options.



2nd day of rads today for me and the bad news is that my skin is already quite sensitive. I have marker clips left in my breast by the BS to mark the tumour bed and I can actually feel needle like pain where they are. Oh, and I met with the RO today and finally got to see my plan. She said only 8% of my lung volume is in the field and she was really happy about that but on the picture it looked big to me - it wasn't till I was walking back to my car I realised that's because 8% of total lung volume actually means 16% of my right lung is being damaged!!!!!! So not happy...



Went for 3 month ultrasound follow-up also today for a paraovarian cyst that showed up back in March. According to the report it hasn't gotten any bigger but the report now says that the 1.8mm nodule in the cyst is a mural nodule. Dr Google tells me that could be a significant indicator for ovarian cancer! My gynae was already favouring an oopherectomy (although my MO is NOT in favour) so I can just see that at my appt next Friday we will be talking timing for that. July and early August is written off with rads so I guess Sep/Oct...



I have just enrolled back into my uni course for the July-Nov semester, and my mother lives in New Zealand and isn't well and I need to at least fly over there for a weekend after rads. Plus I work full time and have already taken so much leave during chemo.



I feel so broken tonight. I apologised to my hubby for him getting stuck with such a defective wife...



Jenn

NancyHB

Jenn:  You are not defective - you're medically challenging.  :-)  Trying to put a positive spin on a bunch of crap that just seems to keep piling up on you.  *gentle hugs*  I'm sorry that things aren't getting better, but am hoping and praying that the end of all of this is in sight - and soon!!

I never had a clip used for my biopsy but have heard they're often left in - which makes no sense if, during rads, you're going to feel the pain.  It makes sense, too - super-heated metal is going to hurt!  Oy - just one more memorable experience of your already exciting rads journey.  BTW - I'd beat any tech that decided to tape me down, especially the "wrong" arm.  I'm sorry you had to go through that, but hopefully they found their brain on the floor, put it back in, and understand that that's NOT an appropriate way to treat a patient.

More *hugs* to you.  

Kitchenella

Oy Jen.  I hope everything works out for the best.

PCBarbie66

I'm so happy for you Annie!!

and Jenn~you are one of the strongest people I have met on the internet.  You'll continue to be strong your just a little overloaded...remember your vacation!!!  Which I was very envious of, I might mention. 

Barb