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Old 07-14-2008, 03:29 PM   #401
harrie
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For Justwannabe

Justwannabe,
If you would like, I will be happy to paste and cut your post to start a thread of its own with it. You will probably get more responses by doing so.
Just let me know.
Maryanne
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*** 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 07-16-2008, 07:40 AM   #402
westswon
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Dreading Herceptin tomorrow

Hi to all of you. As usual, I am spending the last few days prior to infusion dreading another round of Herceptin. It makes me ill while getting the infusion--to a point that I have copied pages of this forum and am TAKING it to the ONC nurses who keep telling me it is "stress"... (okay you taste and feel this way....)

I am also down to 7 more radiations so the fatigue of it, combined with the H is pretty grueling--along with the lack of sleep, still exercising (mildly now) daily, woke with a nosebleed.

My hope is that I can somehow "make lemons out of lemonnade" with the H..since I have to get it until March 2009... every three weeks...

Anyone out there grinning along with the aches, nose issues, dry eyes, slow hair growth, HORRID foot cramps? I take compazine during the infusion--so the day is basically toast...
Thanks for letting me fuss... I know it is a miracle drug but the side effects sometimes make me wonder if the "juice is worth the squeeze"... Fussy Westswon
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Old 07-16-2008, 12:26 PM   #403
Lani
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westwon

Several on the board have noted that asking for the herceptin to be mixed up with normal saline rather than the benzoyl alcohol has helped relieve some of the joint complaints they noted and had attributed to the infusions (rightly or wrongly as chemo and estrogen depletion whether due to AIs or as a result of chemo don't seem to be too nice to the joints either)
Hope this suggestion is helpful
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Old 07-17-2008, 09:29 PM   #404
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Please post your two cents worth on Herceptin "side effects"

I know this is easy to say, but most of us have side effects of one kind or another and most of us have our ups and downs. Feel free to share your frustrations anytime.
The way I can live with the side effects and my ups and downs is to think and believe "I am still alive and kicking and that is a blessing" even with the side effects. The meds are helping to keep us alive and that is a good thing even with the side effects.
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Old 07-26-2008, 10:51 PM   #405
tweet7805
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Wink Herceptin Side Effects

I was 53 with prognosis of IDC Stg IIB PR/ER neg HER +++ Tumor Grade 3 when I started Herceptin/Taxol for 13 weeks after Lumpectomy & completing 4 X AC. I had bad reaction to Taxol so only completed 3 changed to Taxotere/Herceptin for remaining 10 weeks but stopped after 9 due to drop in blood oxygen to 78% which caused perm dmg to left lung. Took a month off everything then started 33 daily rads with Herceptin every 3 weeks for remainder of 9 months but due to MUGA in Dec 2006 drop to 51% from orig of 83% Herceptin was stopped 4 months early. I have terrible nail(split, break, etc)Neuropathy in both feet and hands so bad I have to look down when I walk as have tore the ACL in my knees from falling so often, no short term memory, have trouble thinking of words to make sense when I talk & bad attention span, have shortness of breath and extreme fatique and this is after being off Herceptin for 18 months. My onc says some of these side effects are probably due to chemo also. I am no longer able to work on disability but I would definitely take it again the side effects are bad but I am still alive and kicking able to be with my husband, family, friends & watch my grandchildren grow and enjoy life to the fullest. God Bless.
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Hugs,

Lea
DX 10/11/05; Age 53;Lump found during annual mamo
Lumpectomy 11/22/05; Tumor 1.5 CM DX IDC; Stg IIA;1 Sent Node Pos. with multiple microspopic cells, 2nd clear; All Margins Clear Upgraded to Stg IIB Grade III; HR/PR -; HER2 +++
AC - 12/29-2/28/06
TX/HERC 3/7-3/29 Wkly; Taxol discontinued 3/29/06 Alergic Reaction
Taxotere/Herc 4/7-6/14/06 8 Wkly
Herceptin E/3 Wks 8/06 - 3/29/07
33 Rads 8-9/19/06
Clear Mamo Nov 2006
Herceptin stopped 12/4/2006 due to heart damage shown on Muga Scan
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Old 07-27-2008, 03:20 PM   #406
Mary Jeanne Phillips
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Hi Lani, Great survey. Diagnosed in June 2001,Her 2 positive pro.positive, no lymph node involvement but eschemic evidence.Had radiation regime and then 5FU and Cytoxin I think. Mets to liver, lungs, and bones in 2004, then brain mets in 2006, had craiotomy, mets to brain in 07 and 08, had gamma on them (5 tumors in all.) Started Herceptin after craniotomy in 06. Have taken zometa since 04 I think. Took Femara then for only 6 months. that is all the chemo I have done. I started Macrobiotics in 05. Tumors have remained fairly stable except for brain mets.
I didn't think I had any side effects from Herceptin because I got up evry day and didi my life activities. But now that these things are mentioned I realize I have had terrible sinus, splitting nails, (or thin to no nails) hair condtion. RBC holding but not good.My energy levels have been good most of the time. I am a very high energy person, so that is why I have not taken any systemic chemos up until this point. since Herceptin is a targeted treatment, I felt "safe". I do have terible hot flashes but am post menapausal and have had terrible hot floashes for years. That is why I took HRT for 12 years.
I am in the delimma of what to do now with the offer of Tykerb without Xeloda since there is progression in all the tumors and the mets to the brain.
I hope this helps but basically I am thankful for Herceptin and the low side effects for me. I guess I just take the way I feel for granted and have not blamed it on Zometa or Herceptin.
Would love to hear from anyone about Tykerb. Mary Jeanne
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Old 07-27-2008, 03:34 PM   #407
Mary Jeanne Phillips
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Is Tykerb as terrible as it is reported by some??? Please reply from anyone on Tykerb

I don not know how to start a thread. Is there anyone who could help me?? I reply to others but wanted to post one. I wrote it out in the thread section, but didn't know how to send it. THANKS Mary Jeanne
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Old 07-30-2008, 11:05 AM   #408
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Hello everyone. I was diagnosed in Aug/07, Stage 2B, ER-, PR-, HER2neu+ Grade 3. Did chemo (Epirubicin, Cyclophosphamide, Taxol) which ended last Feb 1/08, finished 32 rounds of radiation, and now just doing solely Herceptin every 3 weeks. I am so looking forward to the last infusion on Dec 12/08.

Thanks for all your posts about the side effects of Herceptin. It is from the experiences of others that I can validate my own side effects. Since it's been 4 months since my last radiation and 5 months since chemo, I still got to feel some other side effects for which I have Herceptin to "blame". I think the worst side effect I got is a terrible headache from the infusion (once a terrible vertigo), thin nails that get easily cracked, some memory issues (although chemo should be partly to blame this time). My own MUGA tests are okay so far.

Over all, I'll have the s/e anytime as long as this drug will keep the cancer out of all of us. Wishing everyone the best!
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Old 07-31-2008, 11:28 AM   #409
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I was taken off Herceptin in April because of congestive heart failure. I had a dose dense schedule of adriamycin and cytoxan and then taxol and herceptin. While I was taking Taxol every 2 weeks I had Herceptin every week. When I finished with the Taxol I went to Herceptin every 3 weeks.
After 11 months of my year of Herceptin I ended up in the hospital with congestive heart failure. My oncologist said it should not have happened so late in the herceptin treatment or gone down so much so fast. But how would he know I am only his third case of congestive heart failure after Herceptin. The respiratory infection that I had had for 3 weeks may have contributed.
On March my Muga scan showed a left ventricle ejection fraction of 49. On April 29 it was between 15-20 by echocardiogram.
My heart is getting better. My echocardiogram was at 25-30 a couple of weeks ago and I continue to feel like I am improving.
That was the big problem I had with Herceptin. After I had been off of it for a while my fingernails and hair were much better. I can actually grow fingernails again and my hair is getting thicker.
I have less energy but who knows whether that is from my heart, the chemo or herceptin.
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Old 07-31-2008, 06:04 PM   #410
Mary Jeanne Phillips
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I have to tell everyone, My MRI of the brain after my 5th met to the brain was negative yesterday,. That means all the 5 tumors from the craniotomy and the last 2 GAMMA;s, show no increase and no new tumors. The ones that have been zapped are smaller or non existant and no increase in any of the others. I am a happy camper and so excited. MY neuro surgeon said he would not worry about the brain anymore but would start concentrating on the ones in the lungs. liver and bones.!!! I wonder if anyone out there knows if tykerb has been effective on mets to those places? would love to get some feed back on that issue. Thanks for this wonderful site. I will have another baseline PET to see where I start out with the Tykerb and measure its effectiveness on the brain, liver, lungs, and bones.
I can only believe it will do the job. Thinking of all of you and being very grateful for the wonderful life I have had for the last 7 years. Mary Jeanne My quote is: I want to be ALIVE when Death finds me.!!!!
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Old 08-11-2008, 11:32 AM   #411
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Hi All- I had 4 rounds of chemo with Herceptin every week until chemo was finished. I had 6 weeks of radiation and continue with herceptin every 3 weeks. I started Femara in May. I was early stage with 3 benign nodes removed and clear margins for lumpectomy.
All the chemo side effects seem to have disappeared. I had numbness in one foot and one hand. They are fine now. No memory issues that I could say are any different than pre-chemo. I do have a chronic dry cough that was checked out by my Physician who couldn't find any other connections to respiratory problem. It seems to be lessening. I also have the "herceptin" runny nose. I feel that the lifestyle modifications I have made are serving me pretty well. I swim 5 times a week to keep my joints moving (no pains at all). I eat only fresh fruits,vegetables, beans. Little dairy except for plain yogurt. Very minimum soy products, Rice milk, whole wheat breads, pasta, a little bit of chicken or fish once in awhile. No sugar!
I do still have problems with insomnia as I start to get into too much negative thinking when I get to bed. I am taking ambien for that and it is working well for me.
I am so thankful for Herceptin. The "cancer life" really takes over your every minute if you let it. I keep hoping that time will start to get my anxieties in check. I go for a massage every week, meditate every day, and acupuncture periodically. We have to be our own advocates at times and my goal is to keep working on a healthy life style.
Best wishes to all my sisters!

Last edited by Alyce; 08-11-2008 at 11:34 AM.. Reason: correct spelling
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Old 08-19-2008, 09:49 AM   #412
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Question

Hi Ladies, it has been a little over a year since I've been on this site. If memories are somewhat intact, I was diagnosed with IDC 10/05, had L mastectomy. Luckily, no nodes were involved. Two weeks out of surgery and inn November started with the several stages of Chemo. Cytox/Adriamiacin for once every 3 weeks, for several months, then on to herceptin & taxol for every week for 12 weeks. Body holding up pretty well during this time frame, fatigue, like you would not believe, but doing o.k. After this round of H&T, I was put straight to Herceptin for once every 3 weeks. I believe that was in the month of April and was to continue through the end of Feb. Things started to go awry after several doses of Herceptin. First I crashed on potassium and the nurses wouldn't let me leave until I had 4 hours worth of potassium pumped back into me. O.K. Tried to go back to work, but started having difficulty in breathing like I was going up hill all the time. Time for a muga check...yep just as suspected, congestive heart failure. Out of work and on to meet with cardiologist. Received new meds through him and set up to go back in 3 weeks for recheck. O.K. after a bit of rest, went back to work (special ed. associate for middle school). After 2nd week back to work, I'm feeling drunk all the time, off balance, not saying the words I want to say, want to say white and I say vanilla instead. Husband and family think this is hysterical! I'm getting concerned. Last straw was I got lost in the school I work in. Supposed to be in one room and was totally in the wrong spot with the wrong student, oops. Have made several calls to the oncologist, they say to call the cardiologist as he's the one that prescribed the most recent meds. O.K. have an app't with him, he thinks I'm a hypochondriac, he doesn't see anything wrong, I should go see my family Dr. and see what he thinks. I'm furious to think that this doctor and all his worldly knowledge thinks I'm a nut case!! My hair was flamming (had red hair before chemo, too) I then make an app't. with the oncologist for the next day and explain all that is going on and that I'm not a nut case, something is not right and please somebody figure out what it is. He gave me a sobriety test with touching your fingers to your nose with each hand and standing on one leg for balance, standing on both legs and then see if I can continue to stand and not lose balance while he pushes me. Fail all of the above. Schedule me for an MRI and take blood tests. He gives me a call and tells me I'm in renal failure on top of the congestive heart failure, whoo hoo. Out of work the rest of school year from March thru May. O.k. thinking I'll have all summer to relax and regain my strength and be fully rested mind and body wise with the start of the next school year. Ha! Not so fast....My husband then turns around in June and files for divorce. Now isn't that some kind of man. Only out of dealing in the knowing that I have cancer in 05 go through all the chemo, having side affects, just getting over them and now this. I realize God does not give us what we can't handle, but my shoulders are starting to sag under the pressure. My husband dragged out the seperation for a whole year, with no support, I went back to work, but the immune system still isn't up to par. Had sinus infect., bronchitis (twice) and topped it off with pneumonia. Had stress that just seems to be part of my daily makeup (forgot, it was also my daughter's senior year in high school, too) and had head games played by the husband throughout the winter. Finally got divorced this June and was given 30 days to move out of the family farm. Honestly, Ladies, how much can a person take with out the thoughts of signing papers to be committed to the nearest loony bin??? I have found a small house to rent. My garage is full of my life that has to find a place in this tiny house. I feel so overwhelmed with EVERYTHING on top of the joint and body pain not to mention the never ending fatique. I'm coming up to my 3 year BC survival anniversary, please keep a prayer going that it will be a bright star to celebrate something happy after all of this mess. Anyone out there know of a ghost writer? Maybe I can write a book: If I can keep smiling, so can you" What do ya think?
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Old 08-19-2008, 03:41 PM   #413
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Thumbs up Please post your two cents on Herceptin "side effects"

Hi,
I can't be your ghost writer, but you deserve a thousand gold stars for hanging in there and surviving though all that you have been through. The May/June 2008 issue of MAMM magazine (mamm.com) had a couple articles about people who live with cancer (and its "side effects")and the fact that they should be recognized. All we read, see and hear about are the folks who survive after only a few months of treatment. The folks like alot of the people on this site who live with cancer for many years need to be publically recognized too. Writing a book or starting a blog on a very visable site is a great idea. Go for it when you have the energy!!
I will be thinking of you.
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Lucky 13 !! I hope so !!!!!!
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 08-22-2008, 05:35 PM   #414
gin-tx
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Smile Reaction to herceptin

I am so sorry you had such unfortunate side affects to Herceptin and other drugs. I was diagnosed in 2006, second diagnosis, first in 1995, had lumpectamy and radiation, no chemo which I should have had. By time I was diag 2nd time, it was in spine, spread to other breast and is very aggressive. Had 18 rads on spine, and presently getting herceptin with aredia and responding very well according to my onc. I will neve be able to stop the treatment as the aggressive cancer will return. Keep me informed of your progress and I wish you only the best.

ginkott1@aol.com
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Old 11-17-2008, 04:02 PM   #415
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I have been on Herceptin since 12/31/98 (for 5 1/2 years it was weekly and now every 3 weeks) and really have not noticed any significant side effect issues. My hair has always been thin; my memory is not the best but I figure age (61) being a factor; leg cramps come and go so I figure diet issues; no weight gain or loss; the darn stuff has been a HUGE blessing for me.
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Old 11-17-2008, 04:22 PM   #416
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I have been on Herceptin since January 2007 and will continue on it until January 2008. My first and second echos showed an LVEF of 79 and 71 respectively, however my doctors felt that these were artificially high for some reason. My third echo came in at 65, still good and the last one I had a month or so ago was 58. So, Herceptin seems to be having some effect on my heart but so far there is not enough concern to discontinue it. I have consistently had nasal problems since starting chemo (TCH) - a little bit of blood, dry nasal cavities, etc. - and the problems continue on Herceptin. Recently, I have developed sinus headaches which I plan to report to my onc tomorrow at my checkup visit. I read that quite a few of us have sinus problems on herceptin so I am trying not to worry too much about the headaches at this point. Cheers to all!
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Old 11-17-2008, 06:20 PM   #417
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I took Herceptin off-label every week concurrently with Taxol when I had early stage bc, just before the HER2 trial ended. When Taxol ended I continued Herceptin for a total of 52 weeks.

I resumed Herceptin when I became stage IV three and a half years after my initial bc diagnosis, and have been taking it now for about one and a half years.

The only side effect was a drop in LVEF of more than 10 percentage points (from 70% to 57%) last year, at which point I stopped taking the drug for three months. My LVEF then climbed to about 63%, which is about where it was throughout the adjuvant treatment.
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 12-26-2008, 11:02 AM   #418
Terri B
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Wink My two cents:

I was on herceptin with taxol weekly from june 2008 to Aug 2008. Now after finishing FEC, I am on Herceptin every 3 weeks until June 2009. My side effects that I can see so far:

Pain: Back pain leg pain when i've been sitting a long time

Sinus: Stuffy nose especially when laying down

Nails: like paper

Smell: Medicine smell in urine on day one and two after infusion

Skin: "crunchy" feet. I lotion them all the time. before i go to bed, and i will be awakened by "crunchiness" and have to re-apply lotion!

I'm not complaining though; imagine where we'd all be without herceptin!!
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46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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Old 12-27-2008, 12:38 AM   #419
Adriana Mangus
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Heartburn...terrible

Real? Yes, very....I have been having these terrible heartburn episodes, it only happens when am laying down, it got so bad tonite, I thought I was having a heart attack. Felt like vomiting, sweating, bad taste in mouth...awful!!!!!!!!!!!!

On Tykerb for the last six weeks + Herceptin (since2003)

I have never felt so sick in my life. I thought I had eaten someting rotten.

Will be seeing Doc January 20th, have a lot of questions about Tykerb.


Anyone with similar side effects?

I appreciate a response....Thank you

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 01-25-2009, 11:49 AM   #420
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side effects

OMG this thread is a life saver. I had ac T and had horrible leg pain with the taxol. And we're talking horrrible crying pain. It went away and then I started the herceptin after surgery and im back to leg and back pain! Nothing like it was the the taxol, but continuous crampy achy legs and cracking pain in my knees, fingers hips. I started jogging thinking that would help, bad idea!!!! My onc has me scheduled for a lower back xray, but im convinced now its the herceptin, just something i'm gonna have to deal with i guess, cos theres no way im stopping!!
Hugs everyone,
Laura
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