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Old 10-20-2007, 05:38 PM   #321
harrie
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For Kat in the delta...regarding the TOPO II and adriamycin. About 20% of br cancer diagnosis are HER2 elevated. Of those, they are either TOPO II positive or negative. If you are lucky enough to be TOPO II negative, then you will not need to receive the Adriamycin regimine. Instead you can go with a taxane such as taxotere which does not have the heart risk that adriamycin has.
I had gone for a second opinion on the chemo issue with Dr. Pegram who works in the same facility as Dr. Salamon. They are both very involved with the HER2 research and herceptin.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 10-22-2007, 10:30 AM   #322
kat in the delta
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Thumbs down kat in the Delta

Maryanne or Harrie,
Are you one in the same ...or were 2 people on the Hercptin/Tykerb site ?- just wondering.
In that article, I read that of the people with Her2 Positive BC,only 8 % DID NOT / DID have that Topo II genetic factor. Do you know if More " DO" have the Topel IIgene?? --which means they WOULD have to take the ADRIAMYCIN CHEMOTHERAPY ??
I know Adriamy. can caused 5 times the amount of HEART damage,when followed by HERCEPTIN. If your heart's LVF is less than 50 or drops 15 pts, Herceptin should not be given for FEAR of MORE HEART DAMAGE, which if not fixed , could result in a "QUALITY of LIFE" issue. I just read the Package Insert of HERCEPTIN under: "Warnings".-
I did not know this when I was taking it, and never looked at the package insert until NOW after all my treatments are done. I guess I thought the Onc. knew this. I did ask ?'s and even asked several times for my Onc to give me another heart scan- the last months when I was ON HERCEPTIN, but he said I did not need anymore scans..and I always got the same answer: " ARE YOU worried that your cancer is coming back?" I would always anwer, "Yes." Then, my Onc.'s response was always :
"Don't worry...YOU worry too much !!" . ,
I should have switched immediately, but my husband got MAD if I said one negative remark about this Oncologist. My Oncologist NEVER gave me a heart test at the END of my Herceptin Treatments !!! This Oncologist Never mentioned my Heart at all when I complained of pain and showed him the blotchy brown spots on my swollen ankles.. One of the only 2 nurses walked into the room on this visit which was one of my last 2 appointments. She heard me tell this oncologist about my ankles,pain,etc. She told the Onc. that my ankles and feet were very swollen during my Herceptin treatments to collaborate and agree with what I had just said. She told him, "Remember how her(my) ankles and feet were during her Hercptin treatments?" He never said a word... except "YOU ARE going to be Fine, lady."
I think the ONCs will now give Tykerb as the first-line/BASE treatment. WILL you ask your ONC or his associates about this.?..

They seem to be ALL "EXPERTS" on HER2+
positive =breast cancer.
Are they the Originators of HERCEPTIN ? Who is/ARE the originators.. are they even in the GENETECH(DNA) company ?
Does Anyone ON THIS SITE,-- know ?
If these Oncologists, that you see happen to be the originators of the (traszumab -sp?-or better for me to say"Herceptin"), I think they will still keep giving Herceptin as first line/base treatment after a genetic test and a positive Topol II gene in their Her2+ breast cancer patients.
WHY do ONCS in the USA - "NOT" determine the more precise chemotherapy(s) to use by running aGenetic test on every biopsy, in the " first " place??
It is the ONLY LOGICAL THING to DO, as far as I can see.
Is it because the DRUG companies furnish the Oncs some chemos FREE.., which causes a chain reaction for the oncologists and drug companies- BOTH to make more $$$ --as we suffer ...??
IT cannot be because the Genetic test is THAT Expensive..because in the LONG run...
a genetic test would SAVE INSURANCES and the government a lot of $$$ after 1,2, or maybe more years of trying a person out on which Chemotherapy Drug works on each particular person !! What a WASTE of time, suffering and $$$ if this is true.....
What do you think ?
RSVP --(ANYONE to me)= publicly or PRIVATELY.
Kat in the Delta
katcdale@yahoo.com or this site's private messages.
Thanks------------------------- Kat


Last edited by kat in the delta; 10-22-2007 at 10:46 AM.. Reason: left out
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Old 10-22-2007, 11:00 AM   #323
theresaw
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What are the blotchy brown spots around the ankles? I have them too but I have been off Herceptin for 8months now...I never mentioned the spots to my Onc because I didn't know if they where caused by the herceptin or not...can someone explain this to me...thank you my her2 sisters..
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Diagnosis bc june,2006.
3months of taxol and herceptin, nupregin shots weekly. Now herceptin only, her2 positive. stage III. Left breast, mastectomy with reconstrutive surgery.
Herceptin until 10/06. Due to low echogram numbers had to stop Herceptin indefinetly.
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Old 10-22-2007, 12:22 PM   #324
kat in the delta
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Post Kat in the Delta

They are from poor circulation back to your heart...and are iron deposits... probably caused by the herceptin...sometimes you may not notice them until 12 months later.... Do your ankle or feet swell, too ?? Go to a Cardiologist if they do.
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Old 10-22-2007, 12:42 PM   #325
theresaw
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Yes they do periodically. I will make do that( go see my cardiologist). I had to stop Herceptin before my year was up because of the damage it was and had done to my heart.
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Diagnosis bc june,2006.
3months of taxol and herceptin, nupregin shots weekly. Now herceptin only, her2 positive. stage III. Left breast, mastectomy with reconstrutive surgery.
Herceptin until 10/06. Due to low echogram numbers had to stop Herceptin indefinetly.
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Old 10-22-2007, 04:36 PM   #326
harrie
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I am the same: "harrie" and "maryanne". I am sure you can guess what is my fake name!!
Hope this answers your question, but if you are TOPO II positive, adrymicin is what is recommended over the taxols.
I have an echocardiogram every 3 months due to the herceptin. I had it during chemo and am still having it done with the every 3 wk intervals of herceptin. Basically it checks the oxygen output on the heart. That will indicate damage or not. So far my output is fine. I notice many at this site have MUGA instead of the echocardiogram.
Swelling, edema, around the ankles is a real concern. It may indicate a heart concern. I remember once I had that and they did the echo and at least we could rule out heart problems and then the edema diminished shortly after. It did not last long, maybe a wk or less.
I believe it is very important to ck your heart during herceptin and ESP with adriamycin. I think 3 months intervals is probably the standard unless there is a problem.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 10-22-2007, 08:11 PM   #327
kat in the delta
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Thumbs down Kat in the Delta

Hey person with the brown spots, too...,
AS you can see...I am chemo-brained too. I now think IT is also from poor circulation to the Brain..lack of O2.
Do you mind telling me or asking WHAT THE SCORE OF YOUR MUGA WAS LAST--make sure you get all of your scores..before letting your Onc know.. just ask the secretary or if needed --sign a Medical Release form to yourself. Let me know...
Mine went down to 47...but I never got the TRUE ENDING score as my onc would not scan my heart ...just kept giving me the Herceptin.... Glad to know other oncs give the Muga...or echo of heart like YOU had. I had only 3 scans of my heart altogether ..including B-4 Adriamycin/Cytoxin... what about YOU ..HOW OFTEN OR HOW MANY IN ALL ..echos did you have??? kat in the delta
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Old 10-27-2007, 01:53 PM   #328
gin-tx
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Dear Kat,

I am not on tykerb, only Herceptin and Aredia. Therefore I have no brown spots at this time. All I know is my onc nurse called and said my echo was perfect, I do not know the numbers but have had 3 in 18 months. I should have one every 6 mo but the time slipped by and it was 9 mo since my last echo. Sorry I can't supply you more info but I'll try to remember to ask onc when I see him the numbers of my echo. The technician scared me, said something did not look right and wanted to give me an injection to get better readings, I refused. I told her if my onc needed it I would come back, obviously he was happy with results and did not need further testing.

hugs,
ginkott1@aol.com
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Old 10-27-2007, 03:19 PM   #329
kat in the delta
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Thumbs down Kat in the Delta

I read on the package insert of Herceptin recently
that your Onc should be testing your heart at least every
3 month,,,not 6 months.....or MORE often if you have any
symtoms....short of breath.,pain.etc..ANY Symptoms??
Still when you go to your NEXT APT...ask the Secretary
for copies of all of your Echo's or Muga's or Rested-gaited
Heart scans/tests.... YOU YOURSELF needs to LOOK at the
Numbers...... Only 3 tests in 18 months ?? I'd want to see
them if I were you..and I DID GET MINE>>I WAS SHOCKED !!
I never mentioned it to my Onc after that.... I showed him the
brown spots ..told him about my pain and shortness or breath
and NOT being ABLE to Clean a room..much less the HOUSE !!
-------------you need to look at your scores.........MINE READ
ME A PREVIOUS SCORE OF 50%..when it was really 47, which
is too LOW to be giving ME --full strength doses of HERCEPTIN
and never ending...until the end of 1 and 1/2 YRS, like you..
OH,....your ONC should also TEST your Heart at the END of treatments
as well....and GET THAT NUMBER TOO...or you will feel..as BAD,
or worse than ME !!! NOW, don't say a word to onc..and GET THOSE
TEST NUMBERS...asap !!!! Kat
kat

Last edited by kat in the delta; 10-27-2007 at 03:30 PM.. Reason: left out end
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Old 10-30-2007, 03:24 PM   #330
gin-tx
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I have not had the brown spots on my ankles up to now but Herceptin and Aredia are the only 2 drugs I am getting. Yes I get an echo every 6 mo, last one was perfect. As far as other symptoms, it could be from other drugs that you are being given. My onc is so good about discussing anything that is on my mind. I feel so lucky to have such a wonderful dr. Good luck to you and keep in touch to let me know how you are progressing. If your heart problems get worse, go see a cardiologist, don't wait for him to send you.

ginkott1@aol.com
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Old 12-15-2007, 10:52 PM   #331
trubev30
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I was on herceptin before I got bone mets but 6 mos into treatment I was hospitalized with congestive heart failure & almost died. I was supposed to be 0n it for a year. It was scarier than the chemo I went thru. The 2nd hospital stay was from a toxic reaction to one of the heart meds. I will forever be stuck with the unenviable title of having CHF. So much for that. My fav song now is "staying alive"
Am on the newest cocktail of Xeloda/tykerb. Hopeful.
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Old 12-16-2007, 02:19 AM   #332
kat in the delta
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Smile Kat in the Delta

Dear ..tube... I have chemobrain..
so I couldn't remember your whole name.. sorry.. but,
How are you doing now? Has your heart recovered? What were your Numbers on the last echo-cardio. you had ?? What was your left Ventricle Output?( not sure of the initials..of the LV...=maybe 3-lettered) but tells you how your heart is functioning... You may have even had a blood test.. that may have detected.. something wrong..like (CHF)let me know....
I agree with Andi that you should get an Echo every 3 mos..but MORE OFTEN if you have problems...like you did.. I think ... some Oncs do not know this and that the Herceptin can be stopped ... or diluted.. for a while.. until your heart builds itself...back up.
I have read recently that , in the long run, the researchers are finding that Herceptin does
more Heart dammage down the road , or (early.).as in your case, ...than they thought..
It may be why I have Chemobrain..
It is Probably the LACK OF OXYGEN to my BRAIN..... from getting the Adriamycin, radiation and then Herceptin..I took 12 weekly.. then 1 every 3 weeks at a strong level for the next whole year.
Now, I cannot even think straight or clean up this house.. I think the MORE of these bad chemos..you get the worse you are.. OR really how these drugs affect each of us personally.
Now, that I have finished the IV's ..(can't remember the date.... but it has been a while now...,
my men(husband& 3 sons), give me these terrible downcasted.. looks of disgust...
I did not choose to be like this.. like THEY think...!!!!!!. I wish I COULD go to work.. but I'd never get there.
It is .so frustrating to be like this !!!
I am unvocused... I am so slow..now. I feel like I am 83..but just 53... I used to go to the gym 5 x's a week....and/or Walk.. I have got to make myself.. somehow get going...little by little.... I think this would help my HEART too.-- better than some unknown 3rd pill as I already take Norvasc..and a diurectic...now...
I do get frustrated..with... ME.. being this way, and with them complaining about what ALL I am NOT doing...
It gets down right oppressive around here.. !!
They want me to be mopping and cooking and cleaning and .. acting like SUPERwoman.. in this messy house. The fact is that ..I can NOT do things as before..,
and NEVER WILL BE THE SAME.!!!

They DO NOT TRY TO UNDERSTAND, and will never understand....
I also think that MDs just give too many RX's...and should give you just one at a time... and look at any other ailments you have had in the past... I have had reynauds syndrome, and I know I do NOT want to be given
a BETA BLOCKER..heart med.
I am NO EXPERT on Heart meds.., though..but read the warning of each heart med. that you are, or were given...
I am so sorry it is in your Bones....
Where and When did the C. appear in your bones.. ???
Hope you are doing better ..heartwise..now. That also scares me more than C., but - you are now the wiser one.. on that..
How are you feeling today ???
I'll keep you in my thoughts and prayers...
R.S.V.P.
Kat
in the delta
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Old 12-16-2007, 07:08 AM
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Old 12-16-2007, 11:46 PM   #333
kat in the delta
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Unhappy Kat in the Delta

I had the basic Adrimy/Cytox..weekly and all the hair came out.. which was not too bad..
Before THAT.. I had a Masectomy.. on my Rt. Breast.. That was in Apr. 05..
Well then the IV's started.. and I thing I tried to be was--TOO brave and Tough-Looking on the OUTSIDE, anyway... went to all but the first ones..of chemo alone..
I was suppose to have 12 Taxols.. weekly ..but that is when HERCEPTIN was first introduced to US who had not HAD CANCER.. before.. I thought it might be a miracle... at first.. and when the ONC asked me if I wanted to try it.. I said .. YES.. not knowing ANYTHING about the DRUG HERCEPTIN.. a mistakes on my part for NEVER even Reading the Package Insert.. I just thought the Onc WAS the Expert... so I went along..adding the Herceptin with my 7th of 12 treatment of Taxol.. Well, Taxol was over after 12 weeks..but the Onc decided to catch ME UP ON THE HERCEPTIN by giving me 6 more Weekly doses of IT before I had the Whole year.. of HERCEPTIN which all were doing... as far as I knew.. I did not know of Heart Problems then... and I did not realize that the patient was suppose to have their Heart scanned with a Muga or Echo.BEFORE ADRIAmy..then again BEFORE HERCEPTIN>>> Then, while on HERCEPTIN>> we are or were suppose to be scanned.at LEAST....every 3 mos..and
IF THEIR HEART WAS - NOT STRONG ENOUGH IN THE FIRST PLACE TO EVEN BE GETTING HERCEPTIN..// Well, WE or YOU should WAIT and Build your HEART UP first.. before getting IT at all..
... Well , I had LOTS OF aches and pains.. all over.. I felt a Nawing aches just about every place on my body.!!. and I I am thin... and my ankles were always ao Tender to touch...still are...and so
SWollen...then... and still swell today....... I was out of breath.. and my mind went to pott......... My husband and sons.. just thougt I was acting.. .... They STILL DO... THEY SAID AS SOON AS I DID NOT GET ANY MORE IV"S..... That I WAS FAKING , and they are Pharmacists , a Comptroller and an ATTORNEY..and the MUSICIAN>> I get little sympathy..... I an OUTNUMBERED ... as you see......
--back to my story....
MY ONC. first noticed some brown patches on my swollen ankles..and I told him it was probably the self-tanner I had used..and it wasn't coming off.... Well IT HAS NEVER COME OFF.. I had already been once to the Dermatologist..- had a basal cell carcinoma removed.. , and when the Brown patches did not go away.. I went back... thinking the worst.... He told me that IT Was MY CIRCULATION
and the my heart was not pumping effeciently..(wise older MD.).
..and the Brown patches were left over deposits of Iron...
The Elderly Dermo.. knew alot.. so he gave me an extra fluid pill to boost the Maxides diurected.. I was already taking.
During Herceptin I had to take the STRONGEST diurectic.. because of my poor little, but SWollen patchy ankles.. My mind was also worse.. as I could not organize a THING..
WE had sold OUR house of many years.. and moved into my husband's parents*deceased then. ... House in the same town.
. & THAT WAS THE WORSE MISTAKE ....--I worked hard with some spanish people laying tile and painting ..etc.. after taking care of of my husbands poor elderly sick parents..and I taught school , too.. Hard to believe what ALL I DID a few yrs back... HISTORY NOW !!
After agreeing to move .. I had MY things,, my IN LAWS old things.. boys back and forth .. from college..... always leaving a trail or host of things... behind dumped in this house... Adding to the NOW PILES UPON PILES >> OF THINGS<< BOxes.. and who knows what.. is WHERE>> ANYMORE>> I have just about given UP..I am TIRED... I did this for so.. LONG>.... I am ready to retire from all major housework.. My husband never turned on a washing machine or even the dishwasher.. and didn't know how.. I know he stilll hasn't turned the dishwasher on... Maybe or Not the Washing machine... he goes to the Cleaners... a lot..........
I went from a 4 bedr;;to a 2 bedr..one... with 3 sons....
..and 4 dogs...
My husband just told me my cancer has been over.. and to STOP LOOKING at this site..
the truth is I don't get on this.. ..as much as I used to and stopped completely a while back.............
but have found This site to be the BEST PLACE..
Last time.. HE said /// to STOP Typing NOW>>. HE NEVER even sleeps with me.. and will not take me anywhere.. because it takes me NOW.. a lot ...hrs... longer.. to do things.. The computer is in HIS BEDROOM.. I usually sleep on the couch.. but my middle son has finished Law School ... and takes my place.. so the Packed 2nd bedroom is now my hole. I hafta push the ruble to make room for my 100 lbs body... I am 53..and our marriage is on the edge...
LISTEN TO
www. Y-ME.org and go to the Sharering Network Telephone Conference... tomorrow late PM or for me at 7 PM...Central .. It is on REALATIONSHIPS.... , so please remind me or YOU ALL PLEASE LISTEN IF HE STOPS ME FROM DOING SO>>

It would have been better if I HAD DIED... is all I see in HIS EYES>> and he conveys this message of
my DISABILITIES OF THE AFER EFFECT of CHEMO to my sons===--------.all in their 20's---PRAY FOR ME THAT they can see thru HIS CRUDE remarks... gotta go now gang.. THE BOSS RULES THE ROOST>>> I am now a dead person to HIM...an albatross.........
Please e=mail me any helpful advice on my declining mental state and declining MARRIED LIFE.........

I accept any MEN.. or ladies.. advice ,
and register at thewww.Y-Me.org site.. for the conference on the Tele..for this WED DEC. 19th.. on relationships..
There is also one around lunch time on the ASCO.. findings.. meetins.. around lunchtime.. check at www.cancercare.com or org.. can't remember ..which.. ...

Kat in the depressing Delta
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Old 12-17-2007, 12:15 AM   #334
kat in the delta
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Posts: 224
Unhappy Kat in the Delta

I had the basic Adrimy/Cytox..weeklyx 4 and all the hair came out..
which was not too bad..
Before THAT.. I had a Masectomy.. on my Rt. Breast.. That was in Apr. 05..
Well then the IV's started.., my WORLD TURNED UPSIDE DOWN.
,but I tried to be SUPERWOMAN- brave and Tough-Looking on the OUTSIDE, anyway... went to all but the first ones..of chemo alone..
I was suppose to have 12 Taxols weekly ..but that is when HERCEPTIN was first introduced to US who had not HAD CANCER.. before..
I thought it was the cure all miracle.DRUG for her2+ bc., so when the ONC asked me if I wanted to try it.. I said .. YES.--. not knowing ANYTHING about theBad Side Effects of the DRUG HERCEPTIN.. a mistakes on my part for NEVER even Reading the Package Insert.. I just thought the Onc WAS the Expert... so I went along..adding the Herceptin with my 7th of 12 treatment WITH Taxol..
Well, Taxol was over after 12 weeks..but the Onc decided to catch ME UP ON THE HERCEPTIN by giving me 6 more Weekly doses of IT before I had the Whole year.. of HERCEPTIN .
I did not know of Heart Problems then... and I did not realize that the patient was suppose to have their Heart scanned with a Muga or Echo.BEFORE ADRIAmy..then again BEFORE HERCEPTIN>>> Then, while on HERCEPTIN>> we are or were suppose to be scanned.at LEAST....every 3 mos..and
IF THEIR HEART WAS - NOT STRONG ENOUGH IN THE FIRST PLACE TO EVEN BE GETTING HERCEPTIN..// Well, WE or YOU should WAIT and Build your HEART UP first.. before getting IT at all..
... Well , I had LOTS OF aches and pains.. all over..
I felt a Nawing aches just about every place on my body.!!. and I I am thin... and my ankles were always ao Tender to touch...still are...and so
SWollen...then... and still swell today....... I was out of breath.. and my mind went to pott......... My husband and sons.. just thougt I was acting.. .... They STILL DO... THEY SAID AS SOON AS I DID NOT GET ANY MORE IV"S..... That I WAS FAKING , and they are Pharmacists , a Comptroller and an ATTORNEY..and the MUSICIAN>> I get little sympathy..... I an OUTNUMBERED ... as you see......
--back to my story....
MY ONC. first noticed some brown patches on my swollen ankles..and I told him it was probably the self-tanner I had used..and it wasn't coming off.... Well IT HAS NEVER COME OFF.. I had already been once to the Dermatologist..- had a basal cell carcinoma removed.. , and when the Brown patches did not go away.. I went back... thinking the worst.... He told me that IT Was MY CIRCULATION
and the my heart was notpumping effeciently..(wise older MD.).said the Brown patches were left over deposits of Iron...
The Elderly Dermo.. knew alot.. so he gave me an extra fluid pill to boost the Maxides diure... I was already taking.
During Herceptin I had to take the STRONGEST diurectic.. because of my poor little, but SWollen patchy ankles.. My mind was just beginning to get worse.. as I could not organize a THING.. No matter HOW HARD I TRIED..... I could only see things here and there coming at me.. like ADD ... or a blend of ADD and alheim....sp? .......
WE had sold OUR house of many years.. and moved into my husband's parents*deceased then. ... House in the same town.
. & THAT WAS THE WORSE MISTAKE ....--I worked hard with some spanish people laying tile and painting ..etc.. after taking care of of my husbands poor elderly sick parents..and I taught school , too.. Hard to believe what ALL I DID a few yrs back...
ALL HISTORY NOW !!
After agreeing to move .. I had MY things,, my IN LAWS old things.. boys back and forth .. from college..... always leaving a trail or host of things... behind dumped in this house... Adding to the NOW PILES UPON PILES >> OF THINGS<< BOxes.. and who knows what.. is WHERE>> ANYMORE>> I have just about given UP..I am TIRED... I did this for so.. LONG just a few yrs back... But now I just cannot get my ACT TOGETHER !! My things are the worst.. as I am constantly reminded.... I am ready to retire from all major housework.. My husband never turned on a washing machine or even the dishwasher. didn't know how....for decades... I don't think he has ever turned the dishwasher on to this vry day.... Maybe or Not the Washing machine... He may have washed his Hunting clothes.. not sure tho.. but he does goes to the Cleaners... a lot..........
I went from a 4 bedr;;to a 2 bedr.HOUSE... with 3 sons....
..and their... 4 dogs...
present time..again he come to me..

My husband just told me my cancer has been over.. and to STOP LOOKING at this site!!
the truth is I don't get on this.. ..as much as I used to and stopped completely a while back.............
but have found This site to be the BEST PLACE..to go for info and HELPFUL ADVICE>......
Last time.. HE said /// STOP Typing NOW>>. HE NEVER even sleeps with me.. and will not take me anywhere.. because it takes me NOW.. a lot ...hrs... longer.. to do things.. The computer is in HIS BEDROOM.. I usually sleep on the couch.. but my middle son has finished Law School ... and takes my place.. so the Packed 2nd bedroom is now my hole. I hafta push the ruble to make room for my 100 lbs body... I am 53..and our marriage is on the edge...
LISTEN TO
www. Y-ME.org and go to the Sharering Network Telephone Conference... tomorrow late PM or for me at 7 PM...Central .. It is on REALATIONSHIPS.... , so please remind me or YOU ALL PLEASE LISTEN IF HE STOPS ME FROM DOING SO>>...and TAKE NOTES ...and send them to ME.....

It would have been better if I HAD DIED... is all I see in HIS EYES>> and he conveys this message of
my DISABILITIES OF THE AFER EFFECT of CHEMO to my sons===--------.all in their 20's---PRAY FOR ME THAT they can see thru HIS CRUDE remarks... gotta go now gang.. THE BOSS RULES THE ROOST>>> I am now a dead person to HIM...an albatross.........
Please e=mail me any helpful advice on my declining mental state and declining MARRIED LIFE.........

I accept any MEN.. or ladies.. advice ,
and register at thewww.Y-Me.org site.. for the conference on the Tele..for this WED DEC. 19th.. on relationships..
There is also one around lunch time on the ASCO.. findings.. meetins.. around lunchtime.. check at www.cancercare.com or org.. can't remember ..which.. ...

Kat in the depressing Delta
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Old 12-17-2007, 08:09 AM   #335
Mgarr
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Ooooh Kat, I am so sorry you are dealing with all of this. I am not sure I can offer much advice but please know you are thought of and prayed for daily. The one thing I would offer is find a counselor asap,(your treatment center should be staffed w/ social workers) -- it is time to take care of YOU now!!! Take time for you, take a little walk, go to a yoga class, If possible change your environment for a while maybe spend time away with another family member or good friend.

With Love,

Mary
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Mary


Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson

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Old 12-17-2007, 09:14 AM   #336
Catherine
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Herceptin side effects

Dx April 2006, Er/Pr-negative and Her2+++, Chemo given first, 4 rounds of adrimyicen and cytoxin. Then 4 rounds of taxol. All tumors and lymphs shrunk to nothing. Then bilateral mast, followed by 33 rads and then one year of Herceptin. Dx at age 58, postmenopausal.

Herceptin side effects:
Bloody nose at first. Dry eyes, crusty nose. Weight gain, rings are too tight. Achey joints and muscles. Difficulty finding words, I speak backwords sometimes. Read a lot, but can not remember what I read. I work part time, and actually do a very good job with my clients. My last Herceptin is in 2 days. Right now my back hurts. When I go to bed at night everything hurts. Mugas every 4 months, all is well. Actually my side effects were light, but they were still there and I think Gentech should know.

Catherine
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Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
13 years and no recurrence as of April 2019
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Old 12-17-2007, 11:32 AM   #337
kat in the delta
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Post Kat in the Delta

Katherine,
Do you still have these poor memory and pain..all side effects? I sure do.. as you can see I agree that Genetech should know. Is this NOT the site ..that reports the after effects of their great drug..(which we really don't know if it helped up or not..) HERE at this thread?
I did not mean to type so MUCH and ... 3 X's.. !!! I can't believe what I did last night... Oh well,,,, afterlife chemo. has not been so good.. as you well can tell ..... RSVP when you can.. here..
Kat in the delta
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Old 12-17-2007, 11:40 AM   #338
mabrooks
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I have been on Herceptin alone since May 07. I am considering stopping it. My memory has been failing - and my fingertips are sore and cracking and I have tingling in my hands and feet. The nose issues I have been able to deal with. Have had 1 MUGA scan prior to treatment and one about 2months ago - both were okay - but I am getting nervous about what else this drug is doing to my body. I know I was VERY lucky to not have to go through chemo treatments. I just lost my best friend to colon cancer - she had major chemo and Avastin over a year. I feel for all of you that have had to endure the chemotherapy. God belss you all. I do appreciate the input from this site.
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3/16/07 dx DCIS - microinvasion - grade 1
lumpectomy - mammosite radiation treatment 4/07
Estrogen+ and Progestrone+ and HER2neu 3+
Started Herceptin 5/07 once every three weeks
Was On Arimidex -switched to Femara
Oncotype 23
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Old 12-17-2007, 12:05 PM   #339
MAB1943
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Did Anyone Have Paget's ? Is It The Same As Ibc?
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Old 12-18-2007, 11:13 AM   #340
Andrea Barnett Budin
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Wink KAT and MADAME DUBOIS...

Oh my. Kat, dear Sister, please get yourself into therapy. I apologize for being that blunt, but I have a sister, niece and darling friend w/similar psychological issues as you describe. They are in therapy and on special meds. And they need both of these for them to feel better, less depressed, less manic, less crazed. I am praying for you to help yourself b/c it appears that no one, except maybe another Sister on this site, is going to urge you to do what you must do.

I have heard other women say they see YOU SHOULD HAVE DIED in their husband's eyes. Your relationships are caving, leaving you w/o a bed to call your own, w/o an order midst the chaos. Please call today. Sent with loving energy for you,
Andi

Maryanne, Do you have symptoms of Pagets or IBC?

You're a major hero on this site, who has stood up to canser with boldness and tenacity. I love your Spirit and have been thinking of you every day, praying you are home and doing better. What's happening? Please share. You can email me if you'd prefer to fly under the radar. LOVE YOU...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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