Older Women - 2009 Herceptin group

GramE

Any "seasoned ladies" out there joining the Herceptin journey in 2009?    What side effects do you have?  Neuropathy is the worst one for me - fingers on my (left) dominant hand.   

suemed8749

Hi Nancy - At age 55, I am certainly well-seasoned!!! I joined the Herceptin journey in 2008 and am continuing it right now - TCH April - July and Herceptin only since then. The only side effect I'm really aware of is the constantly dripping nose. My most recent MUGA actually went up a point from the baseline (74% - 75%). Hopefully the Herceptin is doing its job and knocking out any of those little buggers that may have escaped from the comfy confines of my now non-existent right boob.

GramE

Hi Sue.   Sorry we get to meet this way.   My nose drips off and on - and at the most awkward times - like when eating out at a restaurant !!!   I am a tad more seasoned than you - 63 in January.   

My next muga is due soon.  Since last June it is unchanged thru dose dense A/C, then 12 rounds of Taxol and Herceptin.   I had lump and snb with clear nodes in December.   Herceptin only every 3 weeks, next one is 3/12.   I get an extra bag of saline with the Herceptin and the drip is slowed to 45 minutes because I had chills when it was for 30 minutes.  I consider Herceptin to be my wonder drug !!

I went to Phoenix Union High School back in the dark ages -- class of 1963.  

suemed8749

I used to tutor at PUHS when I was in college at ASU! I'm a teacher now at Glendale High School, which is the oldest high school in the state.

I had lumpectomy last Feb (08) then a re-excision, then finally a uni-mast since there was another small IDC and a few ducts with DCIS. Thank God that the path report after the mast was good - the re-excision had actually taken out all of the cancer except a few "residual cells." Like you, I feel blessed to have no node involvement, and I also feel blessed that we have Herceptin available to us. Of course, I'm still pretty nervous about the PET/CT that my onc wants me to have when I finish next month. I guess that "scanxiety" will be with me always. Even a routine pap smear or colonoscopy makes me nuts. Before all of this, I guess I really took my health for granted. Now, every report that all is normal is a cause for celebration. 

snowyday

Hi leftyakanancy. I'm having more problem with neuropathy it's really bad in my thigh, I also get it in my hans but I think because I used my hands more it not as bad as the thigh.  I wonder who else is getting neuropathy from Herceptin. My problem is I don't know if the herceptin is just making it worse after FEC D.  But I'm curiious how many women have this now.  I started Herceptin Oct, 08.

enjoylife

Hi I didnt know I was a older woman ha or seasoned now that sounds nicer ...anyway I have 3 more hercptens to go my main side effect is water retention I have it in my right arm alot. I am hoping after this my wieght will go down never wieghed this much and I dont eat alot at all and no junk just fruit to keep the plumbing going with the calcuim you can get construpated isnt it fun ...

Maura

GramE

The Older Woman heading was recently added, after 14 pages of only "seasoned ladies" posting and asking for a separate forum.   Maura, are you sure your arm fluid is not lymphadema?   

Weight is not a problem for me - I have lost 15 pounds since I began chemo last June.  It may be due to cutting out junk food and eating much healthier than I had in a long time.   Every once in a while McD does call out my name for a quarter pounder with cheese and fries...  

I tried to pin my onco down to when I am done with Herceptin, since I had 12 weekly taxol and Herceptin before surgery.  My next appt with her is April 23, so I will keep going every 3 weeks till she says no more.    

Welcome, Maura and snowy.  Here's for a good evening, and TGIF tomorrow.   HUGS,  Nancy 

GramE

Happy Monday morning.   My next tx is Thursday.   Gotta find a birthday card and present for my dear brother, who will be 60 on Saturday.   Hugs and Blessings,  Nancy

TGF

Hi ... You can count me in as one of the "older women" and may be the more "senior" of the club.  I'll be 65 Friday the 13th ... and that's the day I have my first chemo.  (My "special" birthday present to myself).  Had the port "installed" last Friday and am still sore ... but hopefully that will go away soon.  My chemo will be taxol and herceptin every week for 8-12 weeks ... then I'll have 6 weeks of radiation daily ... and herceptin every 3 weeks for a year.  Not looking forward to any of it ... but ... it is what it is.

 And we'll do what we have to do ... right? 

hugs,

Teena

GramE

Hi Teena: Welcome.   I was 63 in January.   Tomorrow is my 21st treatment, Herceptin only.  Happy Birthday, what a way to spend your "official" senior citizen birthday.  I had 4 dose dense A/C, then 12 Taxol and Herceptin. Lumpectomy in December.  Now --  herceptin only for a year, every 3 weeks.   Let us know how it goes.  It was pretty exhausting for me, since I live alone.  

They have a van service for medical appointments and I used them for all my chemo treatments except the first one.  My son's inlaws met me and then drove  home.   I would never have been able to drive myself home and they told me NOT to even try.  I do drive to and from the H only.  I opted not to do radiation for many reasons.   

Check out some of the other threads if you have questions.  There is a wealth of information on this site and I found it very helpful.    Ask anything that is on your mind and keep in touch.

Hugs,  Nancy 

GramE

Happy St. Patrick's Day.

swimangel72

I'll be done with my Herceptin treatments at the end of April - I can't wait! No side effects except an occasional drippy nose - and soft, cracking fingernails and fingertips (which hurt like paper cuts!) I get my infusions evry two weeks........is that considered "dose-dense" does anyone know? My chemo in the beginning of my tx was Navelbine with Herceptin - a very unusual tx for someone with early stage 1, grade 1 BC..........I had 3 different oncs tell me this would be OK......I still worry about recurrence though because this was such an unorthodox tx.

NanaA

Ladies, I am going to be starting my taxol and herceptin treatments on Tuesday for 12 weeks and then continue herceptin every 3 weeks for the rest of 1 year.  I grew up in Phoenix too.  I graduated from Central High in 1965 and my husband graduated from Phoenix Christian high schoool in 1963. We moved to the midwest when he graduated from NAU.  I am 61.  I will be doing radiation after the taxol is over and femara for 5 years.   The Dr. is also talking about doing 4 doses of cytoxan.  I am not sure I want to do that.  If I had not been her+ they would not have done any chemo at all.  With the herceptin working as well as it does on Her2 I am not sure why they want to do any other chemo too.  I have to have radiation because they only did a lumectomy.  If they had done a masectomy then would not have needed radiation.  I think you could get a different answer about what you should do and take from a 100 different doctors.  There does not see to be a set treatment not even the herceptin.  I have a friend who  was a stage one and they only did radiation after her lumpectomy.  Her Dr. did not think she needed to worry even tho she was her2 positive.  My Dr is telling me if I do the taxol, herceptin, radiation and femara my chances of recurrence are less that 5%.  Sounds like pretty good odds,  Annette

GramE

After lots of discussion, research, and praying, I decided not to do radiation for the many side effects.  It was too many and the odds of having at least 2 were more than I can handle.   Lymphadema, RIBP, heart and lung damage, burns, skin deterioration, infections, etc.   I have only 30 percent use of my left, dominant hand thanks to a drunk driver 30 years ago, and I had lumpectomy on the left side.   I am a widow and want a reasonable quality of life, also.  

The every 2 weeks schedule may be a lower dose instead of having it every 3 weeks.   I have not heard of dose dense Herceptin only.   Some I know get it every week, but it is a lower dose than I get every 3 weeks.  

This is not making much sense, so I am off to find my blankie and pillow.  HUGS,  Nancy 

neela

hi my mom has been diagonsed with bc had r/mastectomy and is starting chemo from mid april. she is stage iiib with nodes and er/pr negative . i have heard herceptin is a costly drug and is it fda approved. i have heard herceptin in combination with other drgs dramatically reduces recurrence. any info on the matter will help as i will talk to ther onc abt it.

neela

joan11847

Hi

I am a seasoned lady, but still working!  I am 62 with left bc, no node, ER/PR negative, BUT the HER2+ factor had to be there (1 in 4 and I'm the one).  Yes, I am whinning.  I have two years to go until retirement from teaching and I want to continue.  Do any of you ladies still work?  If so, how was chemo for you while working?  My husband is a gem so I don't have to worry about most of the household duties (he is retired and very able).  Hope all goes well for you ladies.

Joan 11847 

GramE

Joan, I am 63, widowed over 6 years, quit work when husband got sick and never went back.  Sold my house 2 yr ago and am in an apartment close to my only son.   

Thursday was another of my every 3 week herceptin only.  I think I am done in September but need to confirm with the oncologist next visit.  My legs and shoulders ache and continuing  neuropathy in my ring and little fingers.   Since I do not work and do not have to be any place special, I can sleep as i want and often find myself in the recliner dozing off in front of the TV.    

NanaA

joan- I just finished weekly taxol 2 weeks ago and had my first herceptin alone last week.  By the time I finished up I was tired all the time.  I did still continue to work 20 hours a week at my job, but it was a good thing they were flexible with my hours.  I worked when I felt good came in later in day if I was tired etc.  The steroid high days you could get a lot done,  Since I had chemo on Tuesday that meant I worked 6 or 7 hours on Wed. & Thurs and a few hours on Mon and Fri.  when I was more tired.  Even now that I have not had chemo for 2 weeks still not anywhere back to normal as far as energy.  Since chemo is cumulative I figure it may take as many weeks to recover as  it took me to get this tired.  By then I will be in the middle of radiation and tired from it.  I do feel a lttle better each day and as I can see little improvements.  a least am not so down and can see that there will be a time when I feel like myself again.  Annette

joan11847

Thanks ladies for your replies.  I had my first treatment and now really know what SE are!  I had them all and still experiencing some after 7 days.  Yes, I can see how it would be difficult to work and do chemo.  I am making plan A, B, and C when school starts again.  Whatever it takes, I will get through this treatment and if I can return to work great.  If not, that is what plan B or C will cover.  I appreciate hearing from you through all this and am thankful we have a site to post our concerns.  Stay with me.

Joan 11847 

GramE

Glad you got the first one over with, Joan.   The unknown of what is to happen is so stressful.   Do you have a port?  I do and that only take the blink of an eye to get things going.  

Are you doing chemo and Herceptin?   What kind?    I had A/C then taxol and Herceptin, and then Herceptin only.   My last one will be July 16.   

As I progressed to Herceptin only, I had to have a large bag of saline added to help hydrate and slow the drip to one hour.  That took care of any dizziness and chills I got.   I also drink a lot of water before and after, and of course run to the potty often.  

The 2 most annoying side effects are bone pain at the end of most days, even if I do little of nothing.   Tylenol 3 helps me get to sleep when it is at its worst, the day of treatment and a day or 2 after.   Neuropathy (numbness) in my left ring and little fingers and occasionally in my feet.

And NO ONE can tell me it is not herceptin.  When I was off of it for 6 weeks when I had the lumpectomy, I had none of the pain or numbness.   That's my story, and I am sticking to it.

  

bwbly

Hi ladies. I am 56 (til mid-August). Dx in January, lumpectomy in early March. Thank goodness I was able to have the Mammosite so I did my radiation first .... twice daily for 5 days.

I finished my 12 weekly Taxol/Herceptin on June 9. Start 4 rounds of AC tomorrow, then Herceptin alone.

I tolerated the Taxol/Herceptin exceptionally well, with very few, very minor SEs. Still have the numb fingers though which is driving me crazy. Sure makes it hard to type LOL.

I've been avoiding the boards about AC SEs. Don't wanna jinx it or stress over what may or may not happen. Trying to go into it with the idea that I'll tolerate it as well as the Taxol (fingers crossed).

Bunny

GramE

Hi, Bunny, sorry we meet this way.   The only comment I have about AC is that you will pee RED for a day or so after - it is the chemo or Red Devil leaving  your body.   Drink, drink, drink, water, juice and/or ginger ale.   Emend is wonderful and absolutely needed if you don't have it -- the wonder drug to prevent vomiting.    Good luck, keep in touch.

murl653

Has anyone had heart trouble w/Herceptin?  I had the six treatments of chemo w/Herceptin.  My heart function went down to 35%.  Seven months later my heart has still not recovered all the way and I still need 6 more herceptin treatments.  Is it worth the rist to my heart?

Bonnie02

Hi Mur1653.   Before having Herceptin did you not have a test on your heart to make sure it could withstand the Herceptin.  I did and was unable to have the Herceptin and then a few months later they decided to try it again and the test came back OK.  I don't know what the problem was but I did have the Herceptin and everything was fine, they did check my heart a few times during the course of the Herceptin to make sure it was ok.   Your Doc. should be able to tell you if it is okay to take the Herceptin, but if it was me I am sure that they would not give it to me.  Hope this helps.

Bonnie

cabingirl

thank you, ladies!

my drippy nose drives me crazy and makes me worry that people with think i am a coke head. I DIDN'T KNOW it was the herceptin!
my question: i finished a year of herceptin (every 3 wks) on dec. 1. should i still be having side effects? i've got the drippy nose, the flaking nails (some are even lifting again!!!) and the neuropathy.
i'm taking femara, so maybe i can blame more stuff on it. i've learned on here that that's why my hair is thinning!

grrrrrr! i hate this stuff.
thanks for listening.

kay