Stage I, but Her2 pos, ER-/PR- AM I DOOMED???

Sassa

Hi Mary Jo.

I had a similar diagnosis to you in December 06.  IDC, stage 1 c, node negative (also sentinel node biopsy plus additional nodes for a total of 9 nodes removed).

I opted for a mastectomy of the right breast.

Treatment was 4 AC, followed by a year of herceptin (which I finish in Feb 08).

I was a basket case when the biopsy report came back.  I don't think I slept or managed to eat a decent meal until I had the finally pathology reports and stage information.

I still have occasional days where my outlook is a little down; I just have to give myself a mental slap.

About the hair loss: I finished chemo in February 07.  My hair started growing back within a few weeks.   I actually buzzed cut it to a 1/4 inch twice to try and even up the hair lengths.  I stopped wearing head scarves in the beginning of May.

I realized that no one paid attention to my hair and, if anyone asked, I planned to tell them Brittany Spears was my idol (this was about the time she shaved her head).  I figured the Brittany comment would stop the questions .

another Mary Jo

bluewillow

Hi there Sassa!

I really enjoyed your reply!  Since I posted that initial conversation, I don't feel near as "doomed" as I did, thanks to folks like you on this board.  Like you, I still have to give myself a "slap" from time to time, but I also feel very lucky compared to other folks, and not just ones with cancer.  There are worse things in life than bc, I have determined...

How are you doing on the Herceptin?  Any problems?  I have my last weekly Taxol on Jan. 28, then go solo w/Herceptin until Nov. '08, and so far no problems.  I have another 2D echo on Jan. 22 to be sure.  Gee, I can't believe I'm almost done with chemo!

Wow, I love your hair report-- it is very encouraging!  I hope mine grows as fast as yours.  Did it come back as your natural color and texture, or has that changed? 

And I LOVE that you're armed with the Brittany comment-- that's so great!  Thanks for cheering me up and best of luck to you and NED forever!

Mary Jo

Sassa

I haven't had any big problems with herceptin.

When I started I was on weekly doses.  I usually had a few hours where I felt chilly and I was a little sleepy.

I am now on once every three week dose.  Because i get a higher dosage, I usually have goose bumps before I leave the chemo room.  However, because i live in Florida, I look on this as just having my own personal air conditioner.  Others may be perspiring, but I feel nice and cool.

Other things I have noticed:  my nails (fingers and toes) are the pits. They split and crack very easily.

The skin on my hands and feet is very dry.  I especially have problems with my fingertips cracking.  I have found that Bath and Body Works has a line called True Blue Spa with a hand lotion called "Look Ma, New hands."  The lotion has paraffin in it and it helps.  The skin cracking was worse on the weekly doses.

I swear that my hair growth is slower.  I was used to my hair growing faster than most people's; it's growth is really slow.

Before chemo, I was a brunette ( with - ahem - "platinum" highlights around my hairline and temples). My hair was naturally curly and thick.

When the hair started regrowing, it seemed that the gray hairs started growing first and I had more of the platinum highlights than before.  My hair is still dark, not as thick as before (I will see what happens when I go off the herceptin), and had very tight curls at first.  The curl is loosening up to what I had before. As the hair grew out, a lot of the gray hairs have regained color and are somewhat of a golden brown in color.

Another interesting thing is that before my hair parted on the right and fell over to the left. That pattern is completely reversed.  My hair parts on the left and grows back and to the right.   

Mary Jo

bonny1963

Hi Mary Jo, How are you? I am glad that you are almost through with your chemo. Going solo on the Herceptin is a breeze.  I go Monday 1/7 for my VERY LAST ONE!!!! I will be completely through with everything.  Other than being diligent in watching and praying that nothing comes back, I am done.  You will be too before you know it.  My onc  let me do the Herceptin every three weeks.  It is so nice not having to go every week or so.  Now I will go every 6 weeks to get my port flushed out and I am going to see about getting my port out as soon as possible.  I will wait a few months just "for fun" but I am so ready.  You are going to make it and you will be so much stronger than you ever imagined.  Good luck and I will talk to you later.  Bonny

bluewillow

Hi Bonny!  I am fine and I hope you are too! Thanks for the encouragement and congratulations on being done with Herceptin!  I'm glad to hear that it has been a breeze for you and hope you get your port out soon.  I am ready to get mine out right now-- it has been so aggravating   but I should be thankful since I've had very little side effects from any of the chemo. I really appreciate your encouraging words about being stronger-- that really helps me out!

Hi Mary Jo and thanks so much for sharing your Herceptin and hair growth experience.  When I go for my chemo, I too feel very chilled and have wondered if that is the Herceptin, since I don't remember that with the A/C doses.  I am normally hot-natured, but it was 7 degrees here a few days ago, and I've been freezing!  I will take your advice on the hand care, and I hope your nails heal soon.  Funny thing about the hair part-- mine to parts on the right side.  Well, I've always wanted different hair, so I'm looking forward to seeing what I end up with!

Good luck to both of you and thanks again for all your help!  Take care and stay warm!

Mary Jo

bluewillow

Bonny and Mary Jo,

I forgot to ask if either of you get steroids with the Herceptin.  I do now with the Taxol and Herceptin, and I always fall asleep during tx and feel dopey the rest of the day...

Thanks!

Mary Jo

Sassa

No steroids with the herceptin.

wendyk13

Hi girls.....my last H is 1/23 and my onc already said the port can go right after that.  I haven't scheduled it yet tho as I don't want to jinx anything.  I can't stand mine either...I am on the thin side and it sticks WAY out and still is uncomfortable.  When I get home on the 23rd the FIRST thing I do will be to call the surgeon.  He said he takes them out just under local so I can drive myself...said it takes about 10 minutes.

I never got steroids with H, just the chemo.  Maybe you are thinking of the benadryl which is given with H to counteract any allergic reactions.  Steroids wouldn't make you sleepy...just the opposite!  That being said...my H was run in 30min and when they gave my the benadryl by the time I was back in my car, driving 50mph..I was so sleepy.  So the nurses cut my benadryl in half the next time, and then stopped it the next time.  Nothing ever happened.  No more tylenol either, just the H for the last 6 months...so se's.  You will do fine!

bluewillow

DARN my CHEMO BRAIN!  I meant to say Benadryl instead of steroids-- pardon my error and thanks, Wendy for alerting me on that!   Yes, the steroids have exactly the opposite effect on me as Benadryl, but I don't mind being wired for a while (get lots of housework done), but I do mind being konked out. 

So, Benadryl is given with Herceptin?  I have about a 45 minute drive one way and I was hoping to drive myself, but don't want to risk falling asleep at the wheel...

Take care everyone and have a pleasant Sunday afternoon!

Mary Jo

wendyk13

Bluewillow....I THOUGHT that was what you meant!  I just asked my chemo nurses re: use of bendryl and they said that most of their patients did just fine without the benadryl.  You could do what I did, and just try 1/2 of the IV infusion of the benadryl and see if you have any reactions.  If nothing, try zero benadryl the next time.  They can always give you some if you start to itch or something.   To me, a little rash/itching was better than falling asleep at the wheel!

Worth asking your nurses about!  If you do still need a bit of benadryl, ask about taking a dose by mouth BEFORE you leave your house...won't kick in until you are there and you could always have some caffeine to counteract the sedating effects.  Just a thought....

Sassa

I don't receive diphenhydramine HCl with the herceptin.  In any case, I am one of those odd ducks that have a paradoxical reaction to some drugs; Benadryl will have me wired.

bluewillow

Wendy, Thanks! I will definitely ask the nurses about half the Benadryl, and also the possibility of oral Benadryl w/some caffeine.  They did cut my steroids (I'm getting it straight this time ) down just a bit last Monday. My husband told the chemo nurses that my eyes were glassy and I giggled constantly for two days then crashed on day 3, so they reduced it from 10 to 8 (mg, I guess).  I had just a bit of nausea this week, but not sure if it was the reduction in the steroids. 

Sassa, I don't think you're 'odd' but in a way, rather lucky. I wish the Benadryl would wire me up.  Or at least make me type correctly-- I just noticed I transposed some words on my previous reply correcting myself the first time...  gee I think I just need to read and not write anything here for a while...  Thanks again for your hair report-- you've given me much hope about having hair again soon and I'm excited!

Mary Jo

mary1220

Hi Mary Jo, I stop by and read sometimes when I have time. I had bad sleepy problems with Benadryl also, at the first chemo. I told them I was highly sensative. The benadryl is to ward off any reactions to the chemo. or Hercept. They had to cut my benadryl down a lot. I wasn't near as tired and drove home after hercept.(not A/C or taxol because they would dope me up until I slept for 24 hours then was wide awake and worked like a fool for 24 from the steroids). Just ask your Onky and he will cut it down usually. I would fall asleep at hercept. treatment but woke up after and drove home. I would be a little sleepy for about an hour after but that wasn't bad. I had slight nausea off and on with the Hercept. but not really bad. I am almost 2 years post Hercept. Do you ever get people calling you Bobby Jo, Betty Jo or Mary Lou? I tell people my name is just Mary because next time I see them they call me every Jo or Mary combination but Mary Jo. Good Luck, Mary

bluewillow

Hi Mary and I'm glad you stopped by!  I just got home from Taxol #9 (just 3 more left, yippee!)  and they must have given me a double dose of Benadryl, because I zonked out a half hour into treatment and slept almost the whole time.  I have ordered my husband to wake me should I start snoring (how embarrassing that would be in front of everyone) and he said I didn't and slept soundly.  Now I'm wide awake and wired.  Good time to do housework and clean closets!  I know you're glad to have your tx behind you and glad to hear you're doing well.  And YES, I am called Bobby Jo and Betty Jo a lot and also "Joann"!  How could our name be so confusing to some?  It's pretty simple.  I don't mind being called just "Jo" because Joe is my dad's name, but leave off the out-of-the-blue names...

Take care and have a nice Monday evening!

Mary Jo

janet11

The funny thing was... when I started going to Herceptin every 3 weeks, the Benedryl stopped putting me tosleep and instead gave me VERY restless legs.  I could NOT stop moving all through treatment.  I asked my chemo nurse about eliminating the Benedryl, she checked with my onc, and they stopped it totally.  For the next few treatments (until i had to stop the Herceptin), I had no problems going without the Benedryl.

So if you haven't had any reactions to the Herceptin, you might ask them if you can try doing without.

But FYI: I drove myself to all my herceptin infusions. I often slept through my treatments (my favorite way to spend the time) but never had a problem waking to drive the 15 miles home.

bluewillow

Thanks, Janet!  I've heard several ladies in the chemo room talk about the restless legs and I have experienced a slight case the last couple of times I've have tx, but not bad. I am going to ask about not doing the Benadryl, because I like to read while I am there and I get aggravated at myself when I fall asleep with book in hand

How long do the Herceptin-only treatments usually last?  Just curious.

Thanks again and take care!

Mary Jo 

Sassa

When I was receiving the herceptin weekly, the drug would be infused over a half hour to 45 minutes. 

My once every three week dose is done over an hour to 1 1/2 hours at my doctor's in Florida.  When I am visiting my daughter in Maryland and go to a local oncologist for my herceptin, that practice does it over 1 1/2  to 2 hours.

wendyk13

MaryJo....I get my H run in 30 minutes, and I'm out the door.  They did start at 1/12 hours, then cut it to 1 hour, then 45 minutes and now 30 minutes for the last 9 months...no problems!!

My last is 1/23....hooray me.  Port..byebye!

janet11

My 3-week dose was 1 1/2 hours as well.  That seems to be typical.

bluewillow

Thanks, ladies!  I appreciate your info about the H infusion times.  That doesn't sound bad at all compared to the hours I spend now with the chemo + H. 

Take care and Happy Friday!

Mary Jo

ps-- good luck, Wendy, on finishing Herceptin and getting that daggone port out!

braceletgirl1014

Hi Jill,

I am going through not having additional therapy for my breast cancer. I was dx'd in march with DCIS, microinvasive, meaning some cells came aout of the ducts. Oncologists don't know if any is traveling in my body, but there is no test to find out. I had a mastectomy as being best since it was very small tumors but in a large area of the breast. I am E/PR - ,lymph node - , early stage and HER2+. Onc, said with or w/out additional treatment there is a 80%-95% I will no hear from the cancer ever again, if I do chemo (taxol for three months) and Herceptin  (for a year) 90% to 97% it can reduce risks of coming back. Because numbers in studies are a fact I decided not to follow anything else, they also say they don't know how much the risks will be reduced with the treatment. Either way I will be fine since with treatment cancer may recur of course in a different part of my body.

My question for you by your comment, did you do Herceptin, chemo, mastectomy? and how are you doing. What anti-cancer foods are you eating and any other changes in your life if you did not do any additional therapy.

Thank you and I wish you the best.

bluewillow

Hi BraceletGirl,

I had a lumpectomy with clear margins last August, finished chemo in January of this year, finished radiation in April, and am in the midst of Herceptin (until Nov. 2008), and I am doing really great!  I feel wonderful, mentally and physically, and I am very optimistic.  Although it was a lot to go through, I went ahead with all my doctor suggested and that way, I would not ever wonder if I did all I could to rid myself of the cancer.  And I have decided not to dwell on recurrence anyway.  It sounds like you took the aggressive route with your mastectomy, and you will be fine too!  I have read extensively that a big factor in preventing recurrence is daily exercise, so I am trying to be more active.  I am also trying to get in more vegetables and I drink lots of green tea.  At first, I freaked out about eating sugar because I heard it feeds cancer cells, but I'm not stressing over it any more and just try to cut back.  I think worrying and stressing about it does more harm anyway.  Good luck to you and I hope this helps.

I am very curious about your user name-- do you collect bracelets?  I collect vintage scarab bracelets (and wear one every day) and my husband often calls me "bracelet girl" because I have so many!

Mary Jo

braceletgirl1014

Hi Mary Jo, nice to hear you are doing great!! Thank you for your comment, of course I am a little worried by not choosing the additional treatment. Hope with mastectomy everything will be fine. I am going to see a nutritionist and try to walk thre or four times a week, something I never do unless I have to and I guess now is that time. I want to leave this behind me and go on with life.

Bracelets.......I love them but I usually loose them especially in the winter time when I take my coats off, off go the bracelets.

Have a great day!!

bluewillow

Hi again braceletgirl!

How neat that you are going to a nutritionist-- that really caught my interest-- how is that going and how exactly does the nutritionist visit work?  I have been considering that myself, but I need to check to see if my insurance will pay for it.  

I know exactly what you mean about leaving BC behind and getting on with life.  I think that is exactly what we should do, and I know you will be fine, especially with your walking efforts and good eating habits.  In reading my original post here, I was so freaked out when I found out about my BC dx, but yet I have learned so much since then and am no longer afraid.  I know I can be more proactive in getting back my good health, and I really have incentive now, and life is even better than it has ever have been.  Not glad I had BC, but glad I am where I am at now in my life.

I wish you the best and a wonderful life after BC!

Mary Jo 

braceletgirl1014

Hi Mary Jo,

The nutritionist thought, I am expecting a call from my NP, so she will give a name.... and cost? I have to see if my HI covers this. Walks, I have not started yet, I am kind of tired most of the time, no energy at all. We'll see.

Hope you are doing great and what a cute baby!!

So weird when people ask me when my aditional treatment starts and I say I am not doing it, they get very surprised and say WHATTTTT?? and WHYYY? that gives me a little to worry but again I am going by docs numbers and they told me good numbers w/o it, and the main reason I also choose not to is because I am terrified. I think it would not help if I am this way, with surgery I was calm and it went great, recovery has been easy, except for my arm I started the PT today.

Ok, talk to you later and have a great weekend.

mary6204

I just stumbled across this conversation.  Mary Jo and I had a lot in common.  I go by Mary, but my real name is Mary Jo as well.  I had the same size, same grade and non-hormone, but her2+ cancer.  No spreading of any kind.  I'm surprised your doctor sounded so gloom and doom about it.  The group of oncologist I go to have always been extremely positive.  I am 2/3 of the way through my 6 TCH treatments.

It's so great to hear from someone that made it through and is doing well.  I actually bounce back and have a completely normal 3rd week before each treatment (well except for this rug on my head)  I babysit for grandkids, go to the gym and no one know's what I'm going through otherwise.  I do get extreme nausea a few days after each treatment and I am dealing with it right now, darn.

Thanks for letting us chemo do-ers know there is a good life afterwards.  I'm sure looking forward to it.  God Bless on being a BC survivor.  There are sure a lot of them out there.  Mary (J0)

bluewillow

Hi Bracelet Girl, you are going to be fine, so please don't worry.  I have been told many times that my treatment plan was very aggressive, and I know many people who had similar dx as me but not the same treatment-- it's an individual thing and your dr. knows your numbers best!

Hi Mary (Jo)!  Glad you found this conversation!  We do have a lot in common and it's great to read that your drs. have been very positive-- that makes me feel better!  Wish mine had come across like that in the beginning-- it would have sure eliminated a lot of stress for me. It sounds like you're getting through chemo very well, and I hope your nausea eases up soon.  Just remember, it will all pass and you will feel great again. And I know what you mean about the rug on your head-- I had to wear caps and scarves because the one wig I tried itched so bad it would end up sideways by the end of the work day and I'd get some very strange looks!   And congrats to you for being a BC survivor too, and life is going to be great!

Take care, everyone!

Mary Jo