ER-, PR-, Her2+ Roll call
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Well sure you do....you are still HER2+++!
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Another ER/PR - HER2+ sister checking in. I'm nearly three years out (first diagnosed August 2009).
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Congrats AnneMarie!!!
On Monday I received my 15th herceptin (out of 52). The first 12 were given with Taxol and a million SE meds. Since I've been getting the herceptin by itself, on Wednesday afternoons until usually Saturday I've been getting swelling in my legs, ankles, and feet - Hello Cankles! - Has anyone else had this on the herceptin alone?
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Julie..I have received 10 weekly Herceptin along with Taxol. It has been put on hold for six weeks because of a low EF on my echo. Just this past week I have noticed swelling in my legs and arms..pretty much everywhere! And my muscles hurt..feels like I have ran a marathon. Thought it might be from the heat wave we've had in Ohio this past week..but I am so uncomfortable. Reminds me of being pregnant!
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kdking....Please make sure you tell your dr. about your swelling and pain, swelling could be a sign your heart having a hard time.... I am truely sorry you need to stop your Herceptin and Taxol but your heart needs a break from those drugs. I have read that your EF will return to normal after being off these chemo drugs, so hang in there. Please keep me posted on how your doing...concerned for you in Cali.
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Marjie...I am doing well with the Neupegin shots. They are definetely getting my wbc up. Only had one really bad side effect once which was severe lower back pain that radiated around to my lower abdomen..felt like I was having contractions...they were so severe I had to take Norco every 3 hours to handle the pain. Then in the morning it was gone...my doctor said it was my bone marrow reacting to the shot...have not had that pain since. Nice to chat with you...
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Lots going on over the last week....Chemo interrupted!! As in my first post I shared that I was awaiting testing on my Thyroid which lit up on a pet scan in January...well ultrasound showed Thyroid has a 2.8cm mass, biopsy showed suspecious for Papillary Thyroid Cancer, so only way to know 100% is surgically remove my left Thyroid which I am scheduled to have done on 4-12-12. They will test it right away in the OR and if it is Thyroid cancer they will remove my entire Thyroid, with one night stay in the hospital. Fortunely, this has nothing to do with my breast cancer which I am grateful for. Once I have recovered from thyroid surgery I will need to decide to continue breast cancer chemo immediately, get radioactive iodine(if positive on the thyroid) or possibly get my masectomy with reconstruction, then finish chemo????? I know thyroid cancer is on a very low importance scale compared to breast cancer, but I am not willing to wait till June to find out if it is cancer. Suspecious does not sit well with me...so I am opting to do it during what was soppose to be my 3 week break from chemo, which now will be a little longer. My onc is considering continuing me on just Herceptin while we are figuring out the thyroid issue. Does anyone know if Herceptin will lower my blood count? If it does I don't want to be on it while my body is healing from surgery...Cancer can really complicate things.....Ugggg
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Grace...thank you for your concern. I am calling this morning to tell the, about my swelling and pain. I would like to be able to take a water pill or something. So sorry to hear about the thyroid issue. As if bc wasnt enough to deal with. Also...I don't thi k Herceptin alone will lower your blood count...but I'm not 100% sure.
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Hello,another ER,PR-,HER2+++ gal here.I just celebrated my
6th year since I've been diagnosed.Doing well,cancer free.
I had a very big 14 cm tumor. And lots of positive nodes.
I had neoadjuvant 4 AC/4 Taxotere + Herceptin,surgery,radiation,
Finished 1,yr of Herceptin,then DIEP reconstruction.
Hope I give some encouragement to other ladies on this board who are
ER,PR- and HER2+++.According to my oncologist,it is the most agressive form
of BC,but there are 5+ years survivors as you can see.0 -
Hi Marina...I had DIEP reconstruction last sept. I am pleased w it so far. Just wondered how you like yours?
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Hi Everyone,
My mom was diagnosed with Stage 3C BC (ER +15%) on her right breast in May 2009 and went through 6 cycles of Taxotere and Carboplatin as well as 18 rounds of Herceptin followed by 30 radiation sessions.She was also on Tamoxifen.
There was NED until June~December 2011. During sometime in June, her arm bone felt really cold as if it had been in the freezer. That sensation occured a few times. In July we saw her oncologist and told her about it but she just said that that was strange (none of her patients has ever experience such a thing).
November/December 2011.
Since June her endurance gradually began to decrease. She loves to dance and sing and found that she could no longer dance and sing as intensly and long as she once did. She went to her GP and had some blood work done but everything came out normal. Around the end of November the symptoms became a lot more significant and during the start of December her voice started to change. She also discovered that her supraclavicular region was swollen. Swollowing and breathing became difficult. The biospy showed that the cancer had reoccured and now it is no longer ER+.
The CAT scan showed that the cancer has spread to the lymph nodes in the chest and esophogus.
January 2012
She went through 14 sessions of radiation on the left side and because she had radiation on the right side 2 years ago the radiologist did not recommend working on that side again. Thanks to radiation, the back pain on the left side as well as the swelling reduced significantlly but swollowing became painful due to radiation. Everything she ate had to be blended (for almost 3 months). Towards the end of radiation, back pain on the RIGHT side began to develop.
Less than a week after radiation, her face started to swell and 3 cancerous skin nodules on her right chest (by the scar) made their debut. The oncologist decided to start her on chemo ASAP (Gemzar and Herceptin). The nodules continued to grow and spread after 1 1/2 cycles and so she was switched to Adriamycin. Three weeks of low dose Adria and the cancer continued to grow. Because she had difficulty swollowing, Xeloda and Tykerb was not a very ideal choice and so she was switch to Eribulin last Tuesday.
After one dose of Eribulin her tumors finally shrank!!! The skin nodules were dark purple but has lightened up to dark pink! =D Her oncologist very happy about it. But because Eribulin made her tried and sleepy for the whole week and because her blood counts were on the low, she decided to give her a break this week.
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Wow Keo! That is a lot to take in! So thankful for the Eribulin that is making her tumors shrink! Will be thinking of her! Keep us updatd.
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Loving all the "good news" stories! Thanks for posting...it helps quite a bit!
Grace - I am thinking of you. WTF...seems like you have cancer getting it the way of your cancer...than just sucks. ((hugs))
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Hi everyone. I just posted an update/info I guess on the "Not Diagnosed but worried" thread. Otherwise, doing ok!
I am also glad to see all the good news stories as well, keeps me motivated! 0 -
Hi everyone! I'm ER-/PR-, HER2+
I was diagnosed on Feb 27. I started chemo on March 13. I'm doing A/Cx4, TaxotereX4 and then surgery. I meet with my onc next week before my next treatment and plan on asking about Herceptin. I'm not sure why it doesn't seem to be a part of my regimen since it seems to be such a great option for us HER2+ gals.
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Nsmolen, given your stats, it is puzzling that Herceptin is not part of your treatment plan. I would definitely ask about it....
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That's what I thought! Is it usually given before or after surgery? Maybe they haven't talked to me about it yet because they're taking it one step at a time? I don't know....
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nsmolen - I would defnitely ask, but I think they will likely put you on it after your surgery. They will get a very detailed pathology of your tumour at that point.0
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I'm so confused. I called my onc to ask why Herceptin doesn't seem to be a part of my treatment planning. (I'm pretty impatient and can't seem to wait until my appointment). I was initially told I am ER-/PR-, HER2+. Well, the nurse just informed me that because I'm only "1 +", I'm considered HER2-, so Herceptin won't be used. She said that they only say you're positive if it's HER2+++. I'm so confused. So she said that I'm actually a "triple negative", which I don't understand. Does anyone have any insight into this?
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nsmolen - I sent you a PM0
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Hello ladies! Hopping on your thread to introduce myself; I am ER-PR-, HER2+. Diagnosed in Dec. 2011, unilateral mx in January, A/C x 4 starting at the end of Febuary.....will be getting Herceptin, and am in a clinical trial (the Aphinity trial). Will be getting rads and then recon in January.
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Welcome Sissydi! I am interested in hearing a little more about the Aphinity trial.
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We didn't find out I was Her2+ until just before finding out that I had mets to lungs and lymph nodes. Original dx was last March with bi-lateral mastectomy (b/c of Hodgkins history). Lymph nodes were clear and most of the tumor was DCIS, except for a .01mm invasion. I opted for immediate reconstruction and developed an infection around the expander on BC side, so we got distracted and didn't think about it when the Onc did not call with Her2 results. In November, shortly before replacing the expander we had to remove, I mentioned this to my PS and he is the one who looked up the result and made a follow up appt with Onc (who is no longer my dr.).
In Dec. I was having trouble breathing and mentioned this to Onc on the appt arranged by my PS. Chest x-ray, CAT scan, bronchoscopy, and PET scan followed and identified the extent of the mets. I started Taxol/Herceptin on Jan. 3rd, once every three weeks with a PET scan after two cycles to determine effectiveness. First PET showed growth in most tumors and three new tumors, so we added Carboplatin to the mix. PET last week showed some tumors stable but still significant growth in many tumors, so now moving to Xeloda/Tykerb.
After hearing how Herceptin has been so effective for so many, I am frightened that it seemed to do nothing for me. My SEs were almost non-existant, and the SEs for Xeloda sound far worse.
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March 31 was my sixth year of being NED.
I had 4 rounds A/C, twelve rounds of Taxol and one year Herceptin. I had a Muga scan every three months during the Herceptin and everything went well. Taxol and Herceptin was a walk in the park compared to the A/C, but today I am fine at soon to be 72 years old. As far as I am concerned, Herceptin is a micacle drug---Thank God for it !! 0 -
GREAT NEWS, dottie! I had the same chemo as you. Still doing the Herceptin until August. I hope to be in the same boat in 6 years, and beyond.
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Keep the faith, keep positive and I am sure you will be here many years to come!0
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Keep the faith, keep positive and I am sure you will be here many years to come!0
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Okay ladies things are getting ready to start for me! Go to get my port tomorrow and then first TCH treatment on Monday (4/9). Can anyone tell me if they had neuropathy how soon it started and how bad was it? I have already gotten a wig but had my hair cut short to prepare.
Just an update, I love my MO because he did tell me that HER2+++ is not a good thing but it is good in that they have a specific med for it. I was glad to finally hear someone say what I had been seeing and researching. I deal well with facts, good or bad!
Anyway, Let's get this stuff started so I can be done!
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Thoughts go out to you mt4ever. I didn't do TCH but A/C followed by T/H and then H by itself. My neuropathy wasn't that bad until after about a month of taxol. Then I put my hands and feet (sometimes) on ice for the taxol infusion. That kept it from getting worse. I was allergic to the taxol and so had to have premeds to help with the reaction. Nothing bad.
Best wishes
(formerly known as yorelh)
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mt4ever -- I have had mild neuropathy since a few days after my first Taxol treatment. I had AC - TH and I'm still finishing Herceptin alone. My MO put me on Vit B6, Neurontin, and alpha-lipoic acid (capsules), and the neuropathy has not worsened, but hasn't gone away yet after about 7 months. It's just a mild numbness on my fingertips and big toes, and on the top of one foot. It hasn't prevented me from doing anything, so it isn't too bothersome, but I hope it goes away.
My other Taxol effect that hasn't gone away yet is fingernail and toenail problems. I thought I had gotten away with just a little fingernail discoloration from AC, but after I finished Taxol, my fingernails and toenails became tough and brittle, and developed deformities that curved them extremely (folding, like a taco) so that they keep getting ingrown and infected. My MO says these effects should go away after a year.
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