32 year old wife ER+/PR-/HER-2+++ (share experiences pls!)
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So good to hear!! Keeping you guys in my thoughts and prayers!
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this is great news, I hope your wife is feeling the improvement, mentally as well.
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SunDiego I am new to this and saw your post.
I am a 32 year old mother of 3 and on January 7th 2010 I was diagnosed with Stage IV breast cancer. I was at the hospital all ready to get my mastectomy only to have the surgeon tell me that she couldn't do the surgery because it had spread to my bones. I was diagnosed on December29th 2009 with breast cancer. So I know how big of a shock it is to get use to one thing only to hear more bad news. I also am ER+ PR- HER2+ I started chemo on January 7th I was on Taxotere Carboplatin and Herceptin. I was getting the Herceptin every week while the other two drugs were every three weeks. I finished my chemo on April 23 rd then the Herceptin went to every three weeks with Zometa for my bones. I had no issues with the Herceptin my oncologist schedules a echocardiogram every three months to make sure that the herceptin is not affecting my heart. After I finished my chemo The oncologist could no longer feel the tumor in my breast and it didn't show up on CT scans. This was wonderful news the tumor size was 7cm. and after 4 months it was gone. I will be on Herceptin indefiently but it does have wonderful results. You wife my also be but on something that will lower her estrogen levels. I am just having my ovaries removed. The medicine that they put me on to lower the estrogen was not effective for me. I hope that all is well with you guys.
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Sun Diego,
I am sorry that I found this post so late. By the time my bi-lat BC was found, it had already spread to my liver. Before my bi-lat mast, a spot was seen on my liver, but 2 biopsies missed it. So it was assumed that it was benign.
I had a bi-lat mast, A/C and Taxotere, and 34 rads. Then a CT scan showed that I had a 9 cm (tennis ball sized) liver met and numerous 2 cm mets throughout my liver.
I went on Gemzar with Herceptin and in 9 months, my liver went into remission. I have remained on Herceptin every three weeks and will be on it for life.
Herceptin is THE reason why I am still in remission. So I am an 8 year survivor of Stage 4 BC, with over 6 years in remission.
I have no side effects at all from the Herceptin.
I promise to check in more often and please feel free to ask any questions.
Denise
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Wife's CYP2D6 came back as intermediate metabolizer. I've read other forums regarding this result and have seen everything from (a) double tamoxifen, (b) do Ooph and go with AIs, (c) no difference in tamoxifen dosage. Anyone have recent experience with how CYP2D6 genotyping has affected their Onc's opinion of treatment direction?
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Wife just completed 4th of 6 TCH treatment. Ran tumor marker tests on the day of treatment and it dropped nearly 70% in the last month.
CA 15-3
1003 as of 8/3 (first reading)
527 as of 8/30
334 as of 9/15
102 as of 10/11 (effects of first 3 regimens only, 3 to go)Keep the positive vibes flowing!
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Awesome news on the tumor markers!
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Hi SunDiego,
That is good news! I finished my 6th TCH infusion and I feel great. I will start with Herceptin only next week every 3 weeks. My Onc thinks that my liver mets are gone by now, but I will know for sure after my PET/CT scan (Oct 28th). Breast surgery is an option if I am stable for some time. I am not sure if and when they will start with hormonal therapy. Also, I am going for a second opinion (MKS) to get Onc in touch with another Onc from different center. Two heads are always better than one.
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Here is a quick update... Tumor marker has dropped from 1003 to 102!!! 90% drop! Fifth (of 6) TCH cycles is tomorrow, so that is two full cycles remaining to drop the marker even further.
Oct 11th CT scan showed the longest side of the liver mass dropped further..down to 1.8 inches (from 2.3" in mid Sept).
That leaves some decisions on the horizon... after TCH is done... more chemo? (ie. Xeloda?) or go straight in and do a liver resection, or finish up the breast work (ie. MX, only lumpectomy was done so far without radiation).
Thanks all for the continued prayers.
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Hi SunDiego,
I am also on intermediate metabolizer of CYP2D6. My onc said that as long as I wasn't a poor metabolizer, that tamoxifen would be usefult to take, but she did say to make sure I stayed away from grapefruit products, as they interfer with the effectiveness of tamoxifen and I couldn't afford that, given my intermediate status.
great news on the markers!
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That is such great news! I'm so glad chemo is blasting that darn cancer! Thanks for keeping us updated, I think about you guys lots and will keep up the prayers!
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Just a quick update...
CA 15-3
1003 as of 8/3 (first reading)
527 as of 8/30
334 as of 9/15
102 as of 10/11
47.9 as of 10/29It's amazing to see this tumor marker go from over 1000 to under 50 after 4 cycles of TCH! Thank you all for the continued support. After the final cycle later this month (11/22), we will be weighing the next steps. Currently it's looking like some form of liver resection is being considered, then deal with a single mx. Discussion of even continuing some Xeloda before a surgery has been brought up as well.
Anyone with experience here, please let us know your thoughts.
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I was diagnose with Her 2 positive breast cancer in 2003 and had a lumpectomy. I was 35. Nodes were not effected. I had chemo for 9 months and the cancer seemingly went away. In 2009 I found it had metastized to my spine. I have been having herceptin therapy ever since. herceptin is easy to take. Unless it effects the heart, there are not many side effects. i just had my 70th treatment. However, it appears it is not working any longer and they are going to start Taxol again. I'll be glad to talk with you or your wife and be helpful in any way I can.
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JaniceMarie Your diagnosis sounds similar to mine. My Her2 positive breast cancer also spread to my bones. Seems to be contained in my spine at this point. i have been having herceptin therapy for 1 1/2 years.
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dx bc june 30th er+ pr- her2+++ bilateral mastectomy july 5th onc informed me no chemo no radiation tamoxifen x 5 years. i was not looking for more treatment but i did ask about the her2 factor and was told since tumor was not more than 1cm herceptin was not an option, no studies done to prove it beneficial with tumor less than 2cm. this is troubling the size of the tumor doesn't seem tomatter the make up of it is what concerns me. i have tried to find info on this am not very successful. taking tamoxifen is making me nauseous, nervous depressed mindless the whole gammet they recite with chemo. had bowel issues stopped ALL medication for 7 days the las 4 of those days i felt more like myself than i have since before surgery. back on tamoxifen x 5 days all the se r returning. i would prefer an alternative treatment, something not sotoxic to the body. i wuld like some understanding of how her2 works.
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Hippiechic... my wife's tumor was 7mm (under 1CM) and she opted to go with TCH. As it turns out she also had a single 4cm liver met. Be sure you get full scanning if you have not already done so, including PET/CT, bone scan, brain MRI, tumor marker tests.
Perhaps for the Tamoxifen you can have the CYP-2D6 test done to see how your body metabolizes the Tamoxifen. Unsure if that will help you, but maybe. Perhaps you can discuss aromatase inhibitors as an alternative (but you need to shut down your ovaries and I believe the SE for the AI's can be difficult as well).
Given the HER2+ status you should already go to the her2support.org site to learn more.
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Just a quick update on my wife's tumor marker improvements (CA 15-3)
1003 as of 8/3/2010 (first reading pre-first chemo)
527 as of 8/30
334 as of 9/15
102 as of 10/11
47.9 as of 10/29
25.3 as of 11/22 (considered "NORMAL"!! Amazing to be down from 1000+. This only takes first 5 of 6 cycles into effect).December 13 will be next full restaging.. hopefully that liver met will be gone. Then meeting with liver surgeons to discuss options...
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great news SunDiego!
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WOW!!! I ma very happy for you!
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WONDERFUL! So happy for you guys!
V
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I am so sorry to hear that you and your wife are going through this. You are an amazing husband for using this resource to get information/advice that can arm your wife to make the best decisions for her and your family.
I was diagnosed with stage 2 Her2+ in April 2006 at the age of 32 (ER-/PR-). At the time I had a 1.5 year old daughter and a husband. My lump was about 4cm and I had one cancerous node. I opted to have had a mastectomy (with reconstruction), chemo and 1 year of Herceptin. My surgeon told me that I had the option of a lumpectomy, but I was afraid to take that chance because the cancer was "agressive". In addition, my mother is a 18 yr. survivor who was also HER 2+ and she had opted for a mastectomy. (My mom never had a recurrence, and that was before Herceptin came around!). I have had no side effects from the Herceptin, but I do take daily vitamins to help with heart health and cancer "prevention" (I take fish oil, vitamin D and vitamin C).
I, like most cancer survivors was (and still is sometimes) afraid of the possibility of recurrence, but my onc advised that with Herceptin the odds of a recurrence are decreased dramatically. I am happy to report that I am just a few months away from 5yrs cancer free, and I am healthy and happy!
In addition, my husband and I had a baby 2 1/2 yrs ago (I got pregnant only three months after my last Herceptin treatment). My sweet baby was a huge surprise since I did not think that I could have any more children)! Miracles are possible.
I remember how difficult and scary it was in the beginning, but it does get better. Your wife will heal. She will survive. And your story will be a testimony that will help someone else.
Sending you peace and healthy/positive energy!
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Just had a restaging PET/CT done for my wife, and the liver met is nearly resolved (SUV down to 2 from 10.8, and now about 1.12 sq. cm, down from nearly 12 sq. cm, or 90% gone!
One part of the report is a bit unsettling, and Onc can only suggest she rescan in 8 weeks to really determine what's going on. In meantime, wife will do TCH another 3 rounds, bringing it to a total of 9 rounds.
Here is the line from the report... would appreciate anyone who has had similar reports chiming in with their experience
"Several new 3 to 4mm pulmonary nodules are identified including 3 in the right lung and 2 in the left lung, which are indeterminate, however metastatic disease cannot be excluded."
Important facts to consider
1. PET scan was also done and did not show any increased activity (realize that given size of 3-4mm the PET likely wouldn't pick it up anyhow.
2. CA 15-3 tumor marker was down again... down to 20. (from original 1000). It has been down each and every time the past 7 readings. (CEA 0.3, CA 27.29 <40) but, CTC went to 1 from 0.
Onc feels it is most likely these are related to inflammation from possible cold or other benign reasons, however given the breast cancer has already spread to liver, nobody wants to rule it out completely.
Any input?
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Sun - I'm sorry I don't have any input on the report. Hopefully, someone with experience can chime in. But congrats on the shrinking liver met and decreased tumor markers!! That's very exciting. I'm glad you update because I think of you and your wife quite often. Hope you guys have a great holiday!
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SunDiego you onc seems pretty optimistic about these but medicine is never 100%. I would say the odds are in your favor that this isn't lung mets but your onc wants to be sure by continuing to check. Once you have cancer they seem to like to check things twice. Also the "however metastatic disease cannot be excluded" could be a CYA statement as well.0
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I wish you the very best. All I can say is my mother was diagnosed Stage 1, clear margins and non-invasive in the lymph nodes with HER2+ breast cancer 4 1/2 years ago. She was chosen for the Herceptin study here in Indianapolis which involved chemo, Tamoxifin, radiation and Herceptin. She was monitored every six months. The Chemo and Herceptin did not cause her any problems because she took anti-nausea meds like she was supposed to and everything went very well.
Last year she started to complain about her stomach and started to lose her appetite. She didn't like alot of food and my mother loves food. By late May to early June we discovered a mass located outside of her stomach between her intestine which caused a blockage. Her oncologist refused to believe this was the same cancer and after another six to eight weeks she finally came to the conclusion that it was the HER2+ cancer she had been originally diagnosed with. Sadly, my mother passed away on November 2nd.
I don't want to scare anyone. I had cancer when I was 29 years old and I know how frightening that diagnosis can be. Just be aware that Herceptin is not a "wonder drug" and if you notice your body not behaving normally and you start losing weight, get in to your oncologist immediately. Get second opinions and get CAT scans and PET scans because the PET scans didn't give the whole picture of my mother. She was monitored (or so we thought) and that cancer came raging back in a way that the doctors were stunned. They had not seen it attack the outside of the stomach and intestine before. Doctors don't know everything. I have learned that they are quite limited in their scope.
I realize her initial treatment did not kill that cancer. It only slowed it down for a short period of time. All of that medicine could not stop it. I am angry and sad and I want to warn everyone about this. I thought she was cured and was blind-sided when it was discovered again. She was only 72 years old.
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SunDiego - how are you guys doing? I'm still thinking of you guys and sending you wishes of continued success with treatment.
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Hi everyone, sorry for no recent updates, but returned to the office today after being out for the last few days doing updated scans... GREAT NEWS!
First PET/CT Aug 5
SUV 10.8
Size 3.7 x 3.2Second PET/CT Sep 15
SUV 5.0
Size 2.3 x 2.0Third PET/CT Dec 10
SUV 2.0
Size 1.3 x 0.4Fourth PET/CT Feb 7 ***
SUV "Negative"
Size 7mm (residual scar?)
'nodes' on lungs are all gone, so it was likely just an inflammation that popped up and went awayTumor markers all "Normal", no PET activity... although the term wasn't used, this must mean "NED" (right?)
So after 9 cycles of TCH, it's time to go to 'only' Herceptin, and add the Tamoxifen.
There was a discussion about possibly entering the trial which randomized adding lapatanib (Tykerb) to Herceptin (no Xeloda). I'll check the other forms for discussions on that topic. If anyone reading this has insight, let us know.
Thank you for all the support the last 7 months.
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SunDiego,
I have been following your posts!!!! I am so thrilled to hear your wife's wonderful news. I am so happy for your family!!!!!
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Sundiego - I'm so gald she has had such a great reponsse to the chemo - give her a hug from all of us.0
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That is Great news, SunDiego!! So happy for you and your wife!
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