Starting Chemo April 2009

Yesterday I saw my Onc and got the answer to several questions I had.  After tx 2 last Friday my left knee started swelling -- SE from the steroids; wasn't sleeping well even with sleeping aids -- SE from the steroids.  I have some scar tissue forming from the lumpechtomy so she gave me some exercises to do to help break it down (almost thought there was another tumor so glad it's just scar tissue).  I got a better idea of what I can and can't do and the can't do list was made more clear so I think some of the depression will lift.

Was totally exhausted all morning yesterday - probably because I did so much on Tuesday when I was feeling good.  I hope today is more level.

Good luck to everyone having tx this week.

Hi,

LesleyAnne--I never liked my hair much, but also found hair loss extremely distressing and it was the thing I cried about the most. But it is getting better now even though I still startle myself sometimes when I realize that my wig isn't my hair. And I am one of those people who does feel more comfortable with a wig even though I wish I was comfortable without. I found a "Noriko" wig online ("headcovers.com" has really good service)  that I like. I am getting many compliments on my 'haircut', and it is pretty natural looking. For looking natural and for comfort, it may help to get a wig that is monofilament or at least has a monofilament top -- that allows your scalp to show through with a partl. I also got a gel band ("comfy grip") that helps dissipate heat--makes it more comfortable. And I do enjoy not having to style my hair everyday!

Dutch in Atlanta -- I found that metallic taste to be one of the SEs I hate most, but in my case, it did go away within the first week after treatment. Aside from Biotene mouth wash- which is terrific-- I also carry around "Oasis" dry mouth spray --that has been a big help for me with the metallic taste.

Best to everyone--I can't believe it has been 5 weeks since I started chemo  and more than that since starting on these boards. Thanks to everyone for all the help and support along the way.
A

Just got back from my 2nd tx.  Very smooth and easy, no complications whatsover. I was much less nervous than the first time, now that I know what to expect. I hope the SE's for all of us who had tx this week are minimal this weekend.

I have to say - the port really makes it so much easier. I didn't want it but I am so glad I have it now!

Good luck and best wishes to everyone!

A question to those of us on the East Coast - do you think it will EVER STOP RAINING? I can't remember what a sunny day feels like at this point!

Amy

Helen...head up, this is my second primary cancer too and I was told that was better than having it met so you can fight this.  I cried alot too to weeks after my diagnosis, the week after my treatment I cried to much on my Onc he prescribed Effexor XR 75 and I haven't cried since.  I love it.  The also told me that crying can be good because it releases good things in you body!!  How long has it been since your original diagnosis and what was your type, stage and node count?

Amy...I had a pretty good day getting tx 2 myself.  No SE's and I've been home lying on the sofa since about three o'clock.  Downer is that my Onc decided I needed the Neulasta tomorrow, but he gave me Loratab 5 for the pain this time if the Claritin doesn't work so I loaded for bear this time.  I'm in the Southeast...Alabama and it has rained here so much that our State Capitol Building in Montgomery is flooding.  Hopefully it will slow down soon.  I want a little because we lived through a drought in 07 and we live on a river/lake and we couldn't get out boat out because the water was so low about 9-10 feet down.   Good luck this weekend and next week I wish you no pain or SE's...

Same for everyone else too...no pain no SE's...

Jeezy~ 

Helen,

I was originally diagnosed in November of 1996 so I had 12+ years of good, one repeat mamo and one turmor marker scare which turned out to be nothing.  In 96 I was IDC 4.5 cm, Stage III, ER/PR-, don't think HER2 was tested then.  I had Lt Mast with 1/12 nodes, 4 AC, 4 taxol and 30 rads.  I did great until February  09 when I went for my routine mamo and they found a suspicious spot.  I went immediately for an untrasound and in two days I was told I needed a core biop.  I knew at this point it was back so I went to see the surgeon and said I wanted a Rt Mast no matter what the biop said so she sent me immediately for the core biop and sure enough it was IDC again.  They originally thought it was 1cm or less and stage 1, but path said it had infiltrated and one place was 3.2 cm, but no nodes.  I'm a Stage IIa, Grade 3, ER=/PR-. HER2+.  Negatives are harder to treat because there is no long term treatment, but I have the Herceptin this time that I will do for a year.  I've not been tested forthe BRACA gene, but I will talk with my Onc next week about it. 

Stay positive your diagnosis is serious as all as all cancer dianoses, but a IIb it is treatable and your attitude is very important in your recovery.  I heard one of the onc nurses tell someone today that we can't chose our place in live and God put us in places where he needs us to be and we can't question it,but try to figure out what the purpose is.

I'm here if you need me or you can email me at jennoray@gmail.com and I will get it immediately. I wish you much luck and hugs...

Jeezy 

Hi All

I've been reading the posts on a number of threads this early AM.  There seem to be so many who want to cut short or stop treatment altogether.  Of course this is personal choice and I wouldn't expect anyone to be like me.  The ONLY women I know that died of BC that were between stage I and stage IIIb were the ones that had no tx or stopped tx.  For me the SEs, as bad as they are, is better than the alternative (death).  My aunt is a 22 yr survivor of stage III, the SE were much worse in the 80's than they are now.  Most oncs will let you stop or not even start as it is YOUR choice.  I'd only remind people to think of the alternative of not treating your BC.

Also, I've seen a lot of posts saying "There's light at the end of the tunnel."  This always reminds me of the poet Robert Lovell -- "The light at the end of the tunnel is the light of an on-coming train!"  Far too often that is sooooo true.

Hi Pam,

I had my second A/C last Thursday (not dose dense - every three weeks), but it does seem like some people have more s/e with #3 - I will be thinking of you and hope the s/e don't last too long.  Napping is great!

Geri

I am 8 days past my 2nd tx of TC, and feeling so much better this time around.  I had acupuncture the day after, right before my Neulasta shot.  I had NO headache this time, and only a little nausea.  (After the first tx I vomited for two days.)  The bone pain was definitely not as severe, neither was the metallic taste. It also seemed to help with the constipation/diarrhea.  I am, however, having sinus pressure, bloody noses, etc. and am using a humidifier in the bedroom, plus the saline nasal spray. 

Lesley, where in No. Nevada do you live?  Are you receiving treatment in Reno?  I am getting my chemo at an oncologists office in Reno, and my Neulasta shot at Renown.

I had my second round of FEC on Thursday.  This round has left me with more nausea, less appetite, and less sleep.  I just decided to throw a little ginger root into a cup of hot green tea, and guess what?  The nausea is gone!  Yay!  Now I've just got to find something that tastes good....

The first round of chemo apparently gave me some scalp burns and welts.  I got all of my hair buzzed off on Wednesday, and my scalp feels soooo much better.  It's going to be hard to getting used to no hair, though. 

Hi all, I thought I'd check in... It's been a rough week. I had my first chemo taxotere/carbo plus herceptin on 4/29. It seemed to go okay, I was on all sorts of premeds. But 4-5 days later I got this allergic reaction, spots on my face (forehead mostly) and then a nasty rash on my neck. Has anyone heard of this type of delayed reaction? It sounds like it might be the taxotere. I have a lot of drug allergies. Also my neutrophil counts went down to 200 at 7 days, so I had to do neupogen shots -- the second caused really bad pain, fever and headache. But next morning they were up to 1250, it definitely worked. Also my heart rate has been high since the first treatment, like 95-100 (normally 60-70) -- is this something to worry about? I'll be talking to my onc in a few days when he's back.

I had my first chemo Monday May 1 and used the Penguin Cold Cap.  I was wondering if anyone has used them and if they were able to pull their hair back in a ponytail? Leaving my hair hang straight down is driving me nuts.

DbOak...Yes, I had my first Chemo on April 9th...the week following I also got severe acne on my scalp of all places and that is normal.  I had shaved my head about a week before, which after I got the acne I was grateful for.  I also kept getting an allergic rash like hives on my abdomen, I discounted them as me worrying about everything and nothing more than that.  Tell your Dr. about the reactions that you are having!

I am going to tell you something, that I hope doesn't scare you, but hopefully the nurses will stay close by you when you get your Taxotere.  On May 4th I had my 2nd chemo.  They started the Taxotere and then basicially left me without watching me at all.  Well, within 5 minutes, I started to get sick to my stomach, very bad...I yelled it out to the nurse across from me..I know I had to say it twice and the look the nurse gave me freaked me out.  She yelled to the other nurses (it was lunch time) that we were having a reaction.  With in a few seconds I was in full anaphalatic shock to where they stopped the medicine and started giving me massive amounts of benadryl and prednisone to reverse it.  They wrote on the notes that my face was scarlet in color and that it was starting to swell.  I had never been so scared in my intire life as I was then.  They let me rest for a bout a 1/2 to get better...then they started the treatment with the other chemo drugs.  Since this incedent I have not been having any rashes nor acne.  The Dr. is changing me to Abraxane which is the same except the delivery is different so it is easier to tollerate  and most people are not allergic to it.

I hope that I helped you and didn't scare you..just be aware about how you are feeling expecially for the first 5 to 10 minutes and make sure that a nurse is with you and you wont get as far as I was.

Hugs,

Colette

Hi hrf (Helen),

I had my 2nd TC on 4/24 and have felt very fatigued this past week.  One week after the infusion, I broke out in very bad hives for 6 days.  After that, I've been very tired.  I've had to take 2 naps a day.   I know my hemoglobin is just a bit on the low side at 12.  But I've been hanging around the 14-15 mark for a long time.  So I'm just trying to get use to the lower level.  I've also felt more muscular aches and some peripheral neuropathy even though I'm on L-glutamine and B complex.

Leslie, I also got my period this month, too.   

Hi to all the Ladies.. and the new ones. WOW how many new to the group... it is amazing...

I have a WONDERFUL STORY that helped me tremendously!

Several weeks ago I did a post about Cancer Treatment Centers of America if anyone had heard of them or checked them out.. There are only 4 centers in the US.  They treat cancer conventional along side natural medicine to help with side effects etc.  So I went to Oklahoma for a week and started treatment there while I was there because I fell in love with the place. Also finding out that I had been Stage IIIA with both breast tumors over 6 cm... HUGE! I started my chemo 11 days ago and have had NO side effects at all.  I did have heartburn for 2 days following treatment but found out that it was orange juice and peanuts that were causing that and have not had it since. I flew home to Florida 2 days after treatment.  I had my first counts done and they were good. I have not had to have to the Neulasta shot either.  Those are all put on hold depending on what your counts are. It is not an automatic get the shot like most of our docs do.  I started AC x4.  I go back there every 3 weeks for a total of 8 treatments.  I also met with an Naturopath and Nutritionist which has HELPED in so many ways.  I have been put on supplements to build the heart muscles from the side effects of the chemo.. L-carnitine and Coenzyme Q10 and the Melatonin 20 which helps the immune system.  I have not had to take anything else.. There has been NO constipation or anything.  If your doc says nutrition is not a big deal, PLEASE research and know that it is.  I have cut out sugars (ice cream, choc, processed foods) from my diet and it seems to have helped out the most.   I just wanted to share this information with everyone (Insurance pays for your flight and everything) because it is an amazing place... My 1st treatment was the 29th of April and I still have hair also... has not started falling out yet but I know I am counting the days for that.. if that is the only SE bring it on!!!!!!!!!  Water, water, water I can say is the best BUT to much will through your body off so my nurse told me about G2 (gatorade with less calories) that helps and does not have as many sugars.. While you are having your chemo if you can get about 50 oz of water down you that helps too... I was told that DocQlax (spelling) helps with constipation also... has anyone tried that? 

I am glad to hear that everyone is handling the treatment.. It is a tough road but we are getting down that road the best way we know how... thumbs up to our strength and keep on fighting...