Taxol and Herceptin only for stage 1 HER 2 positive?
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TtFan - I understand what you were saying. I appreciate your point of view. Sorry if my tone sounded antagonistic. I think like Nancy said, we just a little tired of it all. Nancy and I have the same MO - so our angst maybe directed more personally than to the general medical community.
I'm seeing a neurologist for the headaches. Even though the headaches are clearly brought on by herceptin as I have no history of headaches, my MO is insisting on it. I'm going along with it but I'm drawing the line if they suggest a brain scan. I think that would just be a silly waste of time and resources. We will see.
Hope everyone is feeling well today!
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It's interesting how the questioning prompts the medical professionals to refer you to social workers which implies mental instability as opposed to legitimate questioning. When I started chemo, a social worker was sent in to see me and I was very woozy from Benadryl. She said maybe I should consider taking Prozac because of anxiety in the past, etc. I really do not feel abnormally stressed out by this real problem. In any event, I guess she observed me at the infusion center for the next few weeks and she never came back to me again. I think that busy medical professionals sometimes misread the patients as being overly anxious as opposed to deeply interested in finding the best road to recovery without missing a possible treatment path or otherwise destroying our health. My current concern is trying to schedule a mammogram before rads start to make sure that there are no new growths or calcifications since I didn't have a BMX. It's a never ending project to chase everyone down
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April8-I recently asked my MO about a scan because I never had one since diagnoses of BC. She said they used to scan all the time, buthave found that the people they gave many scans to were exposed to excessive radiation. She also said the ones they gave the scans had a worse outcome in the long run. She advised to just wait the year from diagnoses, for the annual mammogram because I was being treated with chemo and Herceptin already.
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Sorry for any extra stress my post caused. I will, in the future leave my MD at the door. This space is for those of us dealing with this disease as patients, and it will only be as a patient that I post to avoid this kind of misunderstanding.
So, may I ask those of you past the Taxol stage- did any of you lose all your hair or did it just thin? I have had 6 weeks of Taxol and thought it was coming out pretty fast at 3 weeks so I shaved my head. Now it is growing back, although veery slowly and a bit patchy, not much in front. I'm curious whether it's just a matter of time to lose it all along with lashes, brows etc.? If you lost yours, when did it "get serious" about coming out?
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April, I'm definitely more anxious but I think that's normal. I'm 40 years old with a 19 month old baby and cancer. I think it would be abnormal if I wasn't feeling a little more anxiety than usual. With that said, I still take umbrage when told to see psych counseling. Lol
Ttfan - I did cold caps and didn't lose any hair on my head. At least nothing noticeable. Last week my eye lashes started to thin out more with bald patches. I see the new hairs growing in but I look ridiculous with a few of my natural extra long lashes, a few wonky latisse lashes that stick straight out or grow in like a corkscrew and then the bald spots. I've been so upset bc I had beautiful lashes. Now I miss them so much. I look sad with these patchy bald eyes. Anyway, I digress, my brows thinned a little more, too but I still have most of them. I'm 7-8 week PFC. I heard this cycle of growth and loss can happen quite av few times before the chemo gets out of your system. I just broke downand ordered younique 3d fiber mascara.
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Yes, I remember your photo Daniella with your full head of hair, looking great! I was too chicken for cold caps, I can't even eat ice cream without getting a whonking headache. Sorry about the lashes, I'm sure that's no fun either, and seems especially unfair after finishing your Taxol! What is the fancy mascara you refer to? Sounds like it builds on whatever little lashes are there to make something thicker.
I've searched a bunch on this site and other places online, and it sounds like hair loss on weekly Taxol is very unpredictable. Guess I just have to wait and see.
Re scans, I asked all the same questions and got the same answers from my MO, just a mammo in a year. Makes me nervous too.
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Hi Everyone,
I want to let you all know there was a movie made some time ago, Living Proof. It tells the true story of how Herceptin got started. Dr. Slamin, played by Harry Connig Jr, was an oncologist from CA who developed the drug Herceptin and how the FDA gave him such a hard time passing it through. You can get the movie on Netflix or at the library. It was a great movie. Herceptin was initially intended for people with stage IV bc, but in the mid-2000's, they started giving it to early stage bc. A must see!
Marie
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Well, I made it through week one of Radiation. A breeze so far. Monday will be #2 Herceptin only. Has anyone felt the fatigue get worse after finishing the 12 weeks? I am trying to start exercising but still feel soooo tired most of time. Only got on the treadmill one day last week.... Of course it could be because my sleeping is so sporatic at night. I try not to nap during the day, as that makes my nighttime sleep worse. My only real complaint other than being tired is my sinus congestion. my nose varies from runny to totally clogged and this has lasted since before Thanksgiving. My Dr gave Flonase but that only worked for a while then stopped working. Just frustrated it hasn't gotten better. I will be talking to the nurse about it tomorrow.
I agree with everyone's view to always question what you don't understand. I am glad my doctor said I should be reading and researching too and not to just take his word. He believes that we should be our own advocates and question what we don't understand. He pulls up the studies he uses as the basis for his treatment and explanations and gives me copies if I want them. I love that he explains why and what each step does to reduce the chance of reoccurrence.
ttfan: I shaved my head around week 5 as my shoulder length hair was coming out like crazy. They shaved it a #1 guard so I wasn't completely shiny bald. Once I did that I know I lost a bit more hair but it was so tiny I really didn't notice. Some of what stayed did seem like it was growing a little. Now 4 weeks since my last Taxol I have noticed my eyelashes are almost all gone and my brows are really thin, this all happen after my last session. I was hoping it all would start coming back rather than still leaving when I finished the Taxol. the good news is that I look like a baby chick with the bit of 3/4" hair on my head. Still very thin in some areas but it is growing back. I too questioned later if I shaved too soon because it seemed my hair kept growing still, but my angst over watching it coming out strand by strand was much worse emotionally for me.Best wishes for everyone this new year!
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TTfan, I am 3-4 weeks past Taxol and my hair keeps shedding. The back of it where I had cut it short is growing back in slowly. My right eyelash fell out this week and the left one is sore so I guess it's next. Nose hairs are gone. One toenail on my left foot is blackish purple, even though I used the tea tree oil and Sally Hansen nail polish. I actually wasn't feeling bad about my appearance until they asked me at my radiation appt. if the picture on the screen was me(for identification purposes). The woman on the screen looked like a sick cancer patient. (denial on my part). I said "unfortunately so" as I laid down on the table. While there I told myself you can feel sorry for yourself or become more determined to beat this thing and change that image back into your healthy looking self. I know it will take time, but I will get there.
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Nancy! Omg! I had the same reaction when they showed me the radiation I'd picture! I thought at first, "why are they showing me a picture of my 93 year old nanny Lucy?" Then realized the sunken sallow face and sad eyes were my very own. No matter how many people say" you look great" it only takes one picture to realize that no, you look like a cancer patient.
I have maybe 7 regular length eyelashes on my left eye and maybe 12 on the right eye. The rest are all little stubs. I tried to tightline with brown liner and smudge a little to give impression of lashes. Meh...
Ttfan - it's called younique and it's sold by "presenters" in your area. Got to the main website and it will tell you who to order from in your area. If you google younique and chemo you will get a bunch of hits. I'm a make up snob so I feel weird ordering from what seems to be a poor man's Mary Kay, but whatever makes me feel normal quickest. The images look a little Tammy Faye on some so I'm rolling the dice
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Thanks for the input everyone- I guess I'm doing the slow shed like most of you. I don't really regret the shave, knowing I would eventually lose most of it anyway. To me, the very thinned out top just shouts cancer patient anyway. Today my (grown) kids took us out to dinner and I tried out the "halo", a strip of fake hair to give you bangs to show outside the scarf. I have been white/gray/ black mix forever and decided to try the blonde bangs. The kids thought it was a good look and nobody in the restaurant gave me a second look like I get with the no hair scarf. It's fun to try something new.
Daniella, please keep us posted on how you like the younique product. Sounds like I have plenty more hair loss coming my way, it's good to be prepared. Also hard to hear how long the fatigue and hair loss continue after finishing Taxol. After 6 of 12 Taxols I was telling myself I was half way through the hardest part, but in terms of SE I guess not really. Oh well, one step at a time.
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Hello everyone. It's been 5 weeks since my last chemo and I'm in my 3rd week of radiation. I'm so glad to be done with chemo. The radiation is causing fatigue but trying to keep up my energy with exercise. I started walking again and I think it's helping. I was hopeful that I would be the "rare case" that didn't loose the hair. I put up with the shedding throughout the 12 weeks of chemo and was able to pull off the look with a hat. All the while looking fairly normal. I became the master of the comb over, hiding all of the thinning under the hat. Watch out Donald Trump! Two weeks after my last chemo I could no longer fake it and there was just not enough to pretend any longer, so I shaved it. 5 weeks after my last chemo my lashes and brows are now gone. The brows started going week 3 PFC and the lashes this week. I started using Latisse two weeks ago and that didn't help. Hair has begun to grow in other areas. Shaved for the first time in months.
TTfan- I agree ~I feel less of a cancer patient with a bald head than I did with the thinning. You were right in shaving it. Why prolong the inevitable.
For those on herceptin only - are you feeling lots of body ache? Can't tell if it's the left over chemo, the radiation or the herceptin but my body aches. I feel a lot older than my years for sure.
Hot flashes~ is this also in editable se. Cause this really sucks! Any remedy to control it?
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Lumary - I've been on Herceptin only since September. I do get some aches, but nothing to scream about. I'm also 62 yrs old - so I'm sure arthritis can be somewhat to blame. I walk on the treadmill at least 5-6 days each week for 30 minutes. That does help. Last month, I had spasms in my back. I'm not blaming it on Herceptin because this has happened to me in the past long before I was dx with bc. I went to the orthopedic and he gave me muscle relaxers. I had some Lyrica left over from the neurologist which took the pain away very quickly. I didn't even need to go for the MRI that was set up for me. (Lyrica wasn't helping the numbness from the neuropathy - so I stopped taking it.)
Feel better and bring all of these concerns to your MO.
Marie
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Hi,
This is my first post.
DX on 11/2014 IDC 0.7 CM, ER negative , PR negative, Grade 3, Hers 2 positive Plus +3. 1/25 nodes. Margins clear but "close".
Surgery:
11/24/2014 sentinel lymph node bx and left axillary node dissection, one of 25 nodes positive at 0.5 CM
12/11/2014 modified left mastectomy with immediate DIEP flap reconstruction using abdominal fat
Chemotherapy: Jan 8,2015. With Perjeta, Herceptin, Taxotere and Cytoxan every three weeks x6 doses is plan.
My MO mentioned Taxol Herceptin weekly x12 but ended up recommending Perjeta, Herceptin, Taxotere and either Cytoxan or Cisplatinum due to the one positive lymph node.
I chose Cytoxan instead of Cisplatinum due to lower toxicity.
Are there any others out there offered Perjeta as adjuvant , not just neoadjuvant as I was??
I am so happy to be offered both Perjeta and Herceptin. My cancer was small but had spread quickly to one node.
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Stevensp, welcome and good luck. Take good care of yourself during chemo, you'll get through it! Because of the small size of my tumor and zero node involvement, I chose the TH. You may want to check out the discussion boards on Perjeta, too.
Daniella, I'm sorry it continues to be hard for you. I was feeling pressure in the center of my chest several weeks ago and ended up going to the ER to get checked out. Everything checked out fine thank goodness. But I'm not sure if it is a SE of Herceptin, discomfort from the port (which ended up flipping upside down not long after that!) or from radiation. There's so much involved in treatment that it isn't easy to figure out what is coming from where. I lost all of my eyelashes and most of my eyebrows in the three weeks after Taxol ended on 10/28. The eyebrows started growing in very quickly and the eyelashes are coming in short, but full. I actually got a little mascara on them yesterday. It wasn't that pretty but it was a start! Oh, and I can't even look at the God awful picture of myself in the radiation department!
ttfan, like lumary, I kept a lot of my hair through chemo but lost the rest of it in the three weeks PFC. I had very thick hair to start with and it thinned substantially but I didn't have to hide the thinning with hats, etc, until the last three weeks of chemo. I didn't shave, but had the remaining hair cut to about a half inch. More hair fell out after that cut. It's filling in and is MAYBE a half an inch or so long. I'm hoping to have enough hair to look like an intentional pixie cut for a couple of Spring business trips.
Almost done with radiation, only two more left. I've had some fullness and tightness in my upper arm and shoulder so I've been doing stretching exercises. I found a book at the MO's office that I have since purchased. It is The Breast Cancer Survivor's Fitness Plan and contains information about general wellness and exercises for stretching and strength training. I've got to get back on the treadmill, too. Thanks for the reminder, Marie!
I've appreciated the posts about advocating for ourselves. What a great discussion. I'll continue to question everything I need to. Fortunately my medical team has welcomed my questions and input but if it were any different, I would move on to different doctors.
Sorry to be so long but I've been catching up on work and finally catching up here. Love and hugs to everyone!
Sandy
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Hi Ladies,
I have not been on here for several months because amazingly I don't think about cancer on a daily basis anymore! It is so awesome to read through this thread that I started almost one year ago and to hear all of you beautiful ladies supporting each other through this very long and trying struggle.
I wish for all of you, an easy time during treatment and a lifetime of good health!!!
It will be one year on the 20th of this month since my dreadful diagnosis. I honestly can't believe it has gone by so fast. I still have herceptin every three weeks until mid March but am happy to report that my life is pretty much completely back to normal. I have even had one haircut and had my hair colored twice since it grew back in. : ) I am super happy to report that it grew in thicker and is even curly where it was completely straight before. Super happy about that- just seems to "seal the deal" when looking in the mirror doesn't remind you of cancer anymore. I look like me again.
To give you newcomers who are just starting this regimen an idea of how it went for me.
Jan 20th, 2014. Diagnosed. Terrified of the diagnosis and treatments ahead. : (
Surgery Feb 4, 2014. Lumpectomy and removal of 3 sentinal nodes. All clear, thank God! Pretty much uneventful recovery from that except some "cording" and tightness in my armpit. I still have some tightness to this day but have been getting massages weekly and doing daily stretching excercises which has helped about 75 to 80%.
Started Taxol and Herceptin on March 11th, had increasing hair loss after treatment number 4, wound up shaving it after treatment number 5, had some mild, intermittent neuropathy after treatment number 6 that wound up going away completely by the end of treatment. Had alot of fatigue after treatment number 8 that lasted until the end but was still able to work. Just tired and grumpy. : ). Two weeks after Taxol #12, i pretty much felt like myself again. Thank God! Finished chemo May 27, 2014. Noticed some new hair growth in late June and some little crazy curls by July. Got my first hair trim (some shaping), a few highlights in late November and said goodbye to the wig forever !
I started radiation June 30th and have to say it was a breeze. I was slightly red and it was itchy but I managed to not have fatigue. I still have a very slight pinkness to the radiated area. But it is almost unnoticeable now. I do however have some very short lived intermittent shooting pains to the area. My radiation oncologist said it was very normal to have that.
Had a clean mammogram December 10th and haven't looked back!
I feel healthy, I look normal again and cancer thoughts no longer dominate my days. I want to encourage all of you newcomers to hang in there! It seems like forever while you are going through it bit there IS a light at the end of the tunnel!!!
God bless and Godspeed to all of you!
Michelle : )
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Michelle, it is great to hear from you and even better to hear that you are doing so well. Your update gives me hope that I will start to have days when I don't think of cancer, just about living my life. Thanks again for starting this thread that has been such a great source of information and support!
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What an uplifting and welcome message, Michelle! Thanks so much for taking the time to recap your year of treatment. I don't know why it helps so much to hear everybody's stories, but it surely does! I'm so glad to hear how well you are doing, and wish you many many decades of excellent health to come!
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Thank you Michelle for giving us your story! It truly made my day! I'm 1/3 of my way through radiation and herceptin until September. I'm looking forward to putting this in my rearview mirror and not thinking about cancer every minute of every day. God bless you with good health forever!
Lumary - lots of minor aches and pains - especially at night. I just feel like I've aged or my joints have aged significantly. I also get terrible headaches now. Some in the front of my head which I attribute to herceptin because they taper off two weeks after infusion. Then I get awful tension headaches that I can feel starting in my neck and going to the crown on my scalp. Maybe just anxiety induced. The anxiety could be from the herceptin but I'm sure having BC has caused me to have a little anxiety. Tylenol helps with the aches and pains. Also a good stretch in the morning will ease some.
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hi, finally I found this small group with TH treatment. I was diagnosed with IDC last month and recently just had lumpectomy done to remove 1.4cm tumor, node negative. I just met my oncologist from Memorial Sloan Kattering Cancer center yesterday. She recommends to use TH (12 week weekly infusion, followed by 3 weeks herceptin to a full year) as I am Her2 + early stage 1a, as I know CTH has been the standard treatment for years, Although I am happier to get chemo-lite TH treatment, I .... I am just so scared to make the wrong decision. Could anyone share how they mke the final decision?
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Hello Colleen! Very similar situation (1.2 cm, grade 3, node negative)... 2 of 3 MOs recommended TH... third preferred a three letter treatment ( w/ a taxane and herceptin as two of the three). MD Anderson was one of the TH recommending sites. Have you considered the ATEMPT clinical trial? There are three currently participating in the study and communicating via BC.org. I believe MSKC is part of the trial. The sponsor is Dana-Farber. It is for early stage Her2 (3+). Comparing TH to T-DM1. An important clinical trial for future Her2 positives. Looking for, I think, 800 women. Glad you caught this early!!! Maggie
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Welcome Colleen, glad you found us. My situation is similar to yours and Maggiecat's - lumpectomy for 1.2 cm, grade 3, node negative, Her2+++. I had heard about the good results for TH only for early stagers reported at the 2013 San Antonio Breast Symposium. I went into my MO armed with a copy of the study, ready to make my case, but it was already her suggested plan for me. The tumor board at my hospital includes docs from the major Boston centers and all were in agreement. I got through the 12 weeks of TH very well, just completed 6 weeks of rads, and am continuing Herceptin every 3 weeks for a total of a year. Best of luck to you as you make your decisions!
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Thanks to MeggieCat and SandyLovesLucy, your heart warming welcome really means a lot to me. I have a lot of up and down since diagosed with bc, no wonder peoepl call us fighers, I try very hard to deal with all the negativve thoughts from myself. today I found this group and spent the whole day to read all the posts from page 1, I do feel calm now (at least for now
). I have two little kids, my husband prefers CTH ioverTH, he thought if I am still young, I should use aggrasive treatment, he doesn't want to lose me in next couple years. Is there any data showing recurrence differrence of CTH vs. TH for early stagers with node negative?0 -
Colleen.... Goggle the ATP clinical trial...You'll find TH data there. Maggie
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Thank you, I got it.
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Colleen - I had a similar diagnosis and am treated at Sloan. After reviewing the study results from TH and knowing I had a low chance of reoccurrence as I have no family history of cancer, I chose to do TH. Also, I didn't then added cardiotoxic side effects of the other treatments. I just turned 40 with a small toddler. Choosing the best treatment with the most favorable results with the least amounts of damage to my body made de the choice clear. And dont be fooled, TH is in no way chemo lite. Taxol is one of the stronger chemo drugs previously used only with stage IV. It's just that you are not getting a cocktail of side effects from other drugs with it. Good luck
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Thank you for sharing your experience. Most likely I will go ahead with TH not CTH. Now I need to prepare myself for chemo, I used to have anxiety attack, I am so afriad that I will crash during the chemo. Not sure how to prepare myself mentally, I do pray and hope that God will send angels to comfort me
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Hi Colleen - Welcome to the thread we all wish you didn't have to join.
I went through TH and finished Taxol last August. We all have different type of side effects. When I was going for my very first TH treatment, I was terrified. Who wouldn't be? When I was signing in, I told the girl this is my first treatment and I that I was AFRAID! She said, most people that come in are afraid, but when they leave they are pleasantly surprised. That calmed me a bit. My husband and I went to dinner after each treatment - so it really wasn't bad. I also have friends who previously went through treatment for bc who put me at ease. My friend told me she went to dinner with her husband afterwards. So I thought this can't really be that bad. So I am here to tell you, it wasn't!
Drink at least 10 glasses of water each day and exercise. Flush the toxins out of your system. You will be fine. Then you will be like the rest of us telling newcomers not to worry....
Hugs & Good Luck!!!
Marie
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I'm in the same situation, hoping to get into the ATEMPT trial at DF but preparing for TH, just because of the HER2. Hope to start something by early February. I'm not sure how to mentally prepare for this...very small (3ml) tumor, lumpectomy clean, no nodes, etc. yet needing the full treatment bc of HER2. I know so many going directly to radiation. I've stopped the treadmill bc I feel "betrayed" from it, yet know I need to get back to at least walking. Your board is very reassuring for a new member!
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Boston45 - I am also waiting to see if I make it into the ATEMPT trial. Two very small (2mm and 3mm) HER2+ tumors. I'm triple positive and up until last Friday my MO had only been offering Tamox if I didn't get into ATEMPT. As of Friday, she is offering TH too (which only makes sense is she is offering the ATEMPT trial since I could be randomized to it anyway). I'm also hoping to have an early Feb. decision. I just had the treadmill talk with myself this evening! I'm sorry you are having to join us in dealing with this is a great place to be for support and information!
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