January 2012 chemo

Hi Again ladies.. about hair, wigs and cold caps... I was thinking about cold caps and when I discussed it with my oncologist, he was against the idea mostly because he said that it would prevent the chemo from getting to the scalp, one of the location mets can go... he said why go through all this just to get a metastasis to the scalp... I couldn't agree more.

So, I lost my hair, bought two wigs and all was fine. I found the best way to make the wig comfortable was to wear a wig cap (about $6 at TLC online). they are skin colored. My wig boutique had given me wig tape (double sided tape) but I found that uncomfortable. I highly recommend buying a wig at a boutique where you can try them on and have them fitted. I had bought an extra wig online and it was uncomfortable and unattractive. I bought the lace front wigs and they are so real looking... I could even pull it back and no one knew I had a wig on.

TINA.. your tumor may or may have grown that much in that time... I was told that the imaging is not an exact science... I had been told mine was less than 1.5cm, and in truth it was 1.9cm 2-3 weeks later. It didn't grow that much in that time... even an MRI  can't give exact measurements.

Bapen, I would be happy to answer any questions you have about cold caps. I am so happy I used them. I still can't believe I am done with chemo and have all of my hair.

Laura~ I am hesitant because of the cost and there is no guarantee they will work. It seems like a ton of work. I just can't envision hauling 2 giant coolers into my doctors office and changing them every 30 minutes. Are they just unbearable to wear?

Janetanned and CatWhispurrer - If you have a choice, do try to have some time between your port placement and first treatment. I found the port much more painful than I expected and it took several days for it to start feeling better. I'm not sure if they hit a nerve or what, but it really bothered me. I don't think they realize how uncomfortable it can be.

Catwhispurrer - I'm TN too and had to wait three months; mine went from 1.7 to 3.2, though I do understand that the initial sizing isn't an exact science. Chemo was definintely a no-brainer.

I decided against the cold caps, partly because of the cost and because my oncologist said the evidence was so scant. I had also heard about the concerns of the chemo getting where it needs to, so that was the end of that. I figure, losing my hair is probably the least of the SEs that I might face, and I'm really starting to like the hats and wig that I found. I'm not happy, but it's something I can roll with. One suggestion I heard - get really big, fantastic earrings, and it helps you feel better.

For those women with concerns about SEs or existing conditions - definitely make sure your oncologist knows everything, and don't hesitate to ask and be persistent. It's their job to find the right/best treatment for you as an individual. 

rachelvk - wow, yours grew a lot too!  That is the nature of TN.   I know sizing isn't exact, but to go from a lump on my initial ultrasound that the dr said was "so small that the biopsy might have taken the whole tumor out," to 1.8 cm when I had surgery is much more than calculation discrepcencies.  The breast MRI I had a few weeks before surgery showed it at 1.6 cm and my onc said it is pretty accurate.   I know the hormone receptor tumors don't grow that fast and my BS seems to deal with that more.  My Ki67 was 23% and Grade 3, meaning it was fast growing, and the doc's seemed to be slow-moving.   Anyway, I guess it is water under the bridge now.   Thanks for agreeing that I should wait a week after the port surgery before starting chemo.   After reading the "port placement" thread, I had made up my mind to wait at least a week as most women said that the port was worse than the lumpectomy surgery and took 4 days to 2 weeks for it to settle down.  Since I get big hematomas from any surgery, it doesn't make sense to rush into chemo after surgery.  My onc wanted to start chemo 4-6 weeks after lumpectomy and I will still be within that timeframe even if I wait a week after the port placement.

bdavis - thanks for the wig advice.   that is my next assignment - to find some comfortable wigs.  I already know my insurance won't pay for it, so money is going to be an issue too.  I already cut my hair off and sent it to a place that makes a piece with my own hair that I can wear scarves and hats over it.  I should receive that soon but it was kind of expensive.

Catwhispurrer.. When patients are done with their expensive wigs many donate them to the American Cancer Society... so it may be worth an inquiry to see if your local chapter has any wigs... You can wash them with shampoo and freshen them up... another option is to go to a wig boutique and buy a sample (one that people try on) I bought my second wig that way... it was $250 and a very pretty wig... much much much nicer than the TLC.com wigs. Those wigs look nice in the catalog, but the texture, feel everything is not so nice IMO.

Is anyone else working hard at the exercise and diet to try and get as healthy as possible for the chemo etc?



I'm a former Weight Watchers leader and area coordinator but since moving into full-time work and studying part-time for a university degree I had put on quite a bit of weight in the past 4yrs. The time I used to have for exercise just disappeared :-(



Since my diagnosis on 01 December I have lost 11lbs. The initial 6lbs loss was due to stress in those first couple of weeks and then the rest is because having read all about the risks of being overweight and reoccurence I am determined to get as much of these additional lbs off as I can. Especially since I've been reading about how our treatments tend to make us PUT ON weight.



I'm also concerned about getting my heart as healthy as it can be because of the risks of heart side effects for Herceptin and my chemo (FEC + Taxol) so have been getting out and power walking to work my heart each day. The dog is really enjoying getting fit too!



As well as the exercise I have cut out most sugars and starch from my diet in the past couple of weeks after reading some of the latest research about recurrence and diet... I did allow myself some dessert and wine on Christmas Day as a special treat :-)



So, anyone else out there pounding the pavement and resisting the lure of potatos with me?



regards Jennifer

Jennifer - I'm trying, but since I returned to work, I'm finding it so hard to find time. And the cold weather here takes away my outdoor walks. However, I am hoping to make more of an effort. While it doesn't show up on the scale, I know I've put on inches and now look about as close to 'fat' as I ever have - usually it's just been a few additional curves that I could suck in. Time to move!

Catwhispurrer - Yes, water under the bridge. I've been reading more positive things about TN, so I'm a little less freaked out than I was originally. But that doesn't mean I won't be watching over my shoulder for the rest of my life. I'm glad you were able to delay chemo to give the port a chance to quiet down. I'd even say the port placement was worse than my bmx! Pain meds dulled everything after surgery; after the port placement, they told me if it started to hurt, just take some Tylenol.... I grabbed the Percocet so fast. And definitely have a small pillow ready to put between you and the seat belt when you drive or ride in a car. 

Hi,

another new member from Australia ( this board is fantastic, have learnt so much).

 Left Mastectomy 15/nov 2011 15 days after husband found lump. 3 nodes removed.

Had power port put in last week ( 7 days ago) due to poor veins. It was a terrible experience getting it in. My left boob ( it is placed armpit level on left boob) is bruised from above shoulder level to nipple.

So not sure how one gets it put in the same day as infusion, the pain is just starting to settle down now.

First chemo FEC is on 30th Dec 2011 , so in 2 days. I am absolutely terrified. Have brought lots of the stuff listed  on this board, just in case. Have the wig, got most of the A$300 back through health fund, got the breast form, again,got all that back A$400 from a government initiative here in Australia. Have the scarves etc, have lined up my hairdresser to come and shave my hair at home when I get to that stage!!

Have my brother and sister in law to come with me on Friday, need them to help push/drag me through the door..

Jenn28.. I see you are from Australia as well and starting this month. Which state are you in? And you have a female onc.. so do I !! My BS was a female as well. Would love to hear from you.

AND  

Deb267 I also have fibromyalgia... so would love to hear from you about how you plan to do this with FM. MY Rhuemy docter tells me that the steriods may help to calm down the FM she says sometimes for about 1-2 years, that would be great BUT... I have learnt to take it all with a grain of salt. Would love to hear more from you about how BC and FM are treated in USA and if it is different to here in Aust

Look forward to hearing from everyone as we journey on into 2012

Regards

Lynne 

Hello everyone...I will also be joining this board...My Chemo starts Dec 28^th ACT - 4 rounds of AC every 2 weeks followed by Neulasta shots the next day, and then Taxol for 12 weeks. I had a BMX & SNB Nov 4^th with no reconstruction and am doing great (so they tell me-I missed the day they handed out the Breast Cancer hand books). This will be my first post as I didn't have much in common with the other BMX posters...I am very fit, active and thin and I trained during the time before surgery to recover quicker and studied everything I could find and fact checked 5x the information I found..just to be safe that it was true, not just scary random information. 

Nancy HB:  I will look at that forum right after this post "Fitness and Getting Back into Shape".  Thanx

I was in complete denial that I had Cancer (thought I could just cut it out of me and move on with my life...duh) till the 2^nd opinion from my Onc. I thought the first Onc. was a little aggressive since my Surgeon had thought I would not need Chemo (should have kept that opinion to herself-was her only down fall-great surgeon...her opinion left me unprepared).  The second Onc. wanted to hit me harder, wasn't prepared for that either, but my Oncotype score came back as a 19 and I am 45, 3cm tumor with perineural invasion present...and my KI-67 was only 8% growth rate, but the tumor was large..these were our original concerns that the 1^st Onc. just didn't address as well, nor did we get to see the Oncotype test...which I had been waiting weeks for (there is more to the test then just the one score, it's 4 pages long) ...I called Genomic Labs in CA. who faxed a copy to the 2^nd Opinion Doc who gave me a complete copy (with out me asking), gave me copies for all the Chemo options, explained which one she would choose for me and why...I am also one of the "Grey Area Women", gave me all the prescriptions, Muga Scan script and told me should I choose their facility to bring the original cancer slides to them and as they would be redoing the Pathology themselves, just to insure accuracy.  No pressure, honest opinion, explanations and paperwork to help me make the best decision for me.  I opted to switch the next day...I am now going to Memorial Sloan Kettering for my Chemo.  My husband & I feel confident that this doctor is looking at me & my issues (another time on my issues J) and I'm not just a dash on a slide ruler that fits into one category..."this is what everyone-like you gets" scared the crap out of me ...it would have been easier to just stay with the first doctor, which was a much comfier "I just stubbed my toe kinda atmosphere" vs. the "IKEA-You have Cancer atmosphere of Sloan". The extended drawn out Taxol (12 weeks for a smaller amount each week to measure my SE's if I can take all 12 then I would have the same as everyone else by the end, and less risk on irreversible damage) is because of my active life style...if I loose nerves, part of my career is done...course if I chose the wrong Chemo I would loose far more...easy to say harder to do.

Done rambling for now...and I am glad there is this Jan Chemo group...I'm tired of being the strong one, annoyed at how Nice everyone one is all the time and I will cause damage soon If I hear one more time "Everyone is different".  I want someplace to go where I can bounce SE's off other people or just complain...like today J

For a few minutes here, I actually forgot Chemo starts tomorrow.

Is anyone else like me?  I have the opposite problem with weight as most here.  I am thin and tend to lose weight when stressed (like now).   In fact, I've had a very stressful year, which may be a contributor to the BC, and lost 10 pounds.   I am now down to 107 pounds.   I met with a dietitian who said that is a good weight for my height but I should gain about 5-6 pounds since that is where my adult weight had been most of my life.   I tend not to eat when stressed and don't hardly ever feel hungry.   I am drinking high-calorie supplements to try to maintain my weight going into chemo.  I have been a runner and regular exercise up until this past year when my whole life fell apart.  I need to get back to regular excerise so will check out the other fitness thread.  I just was wondering if I am alone in the weight loss.

PC Barbie

That is very interesting about the Oncotype score. I have not heard that! I think that would make a good thread for this forum, as I have read many instances of women with higher scores than mine turning down chemo because their score falls into the low risk category.

PCBarbie - Good luck with your first tx. If you haven't checked it out, the Dec chemo group has had its share of the ups and downs of the SEs and the other stuff to expect or be ready for. I've been pretty lucky since my first tx, although my hair has been threatening to desert me since the weekend, but it's still hanging in on Day 16.

Good luck Lynne,



I know Cabrini - I've visited the oncology clinical trials dept there this year as they are participating in one of my trials (I'm a cancer clinical trials coordinator). It's a lovely little centre :-)



regards Jenn

Hi I'm Fran from oct 11 chemotherapy.just wanted to say hi & it wasn't as bad as my mind made it out to be. I cried when I first walked in.the nurses are so great. But guess what i'm getting through it. Finished four dd AC. Had my 3/12 rounds of tackle yesterday.



What im saying is don't let your mind freak you out. We can do this.



And to? Nancy ...have you let your mind MO know about delay in port? They may be able to get you into local Interventional Radiology for port placement.