My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi,

We're new to this group but I thought it might help to post my wife's situation on this forum and our oncologist told us that patients learn the most on supportive forums like this.

My wife, Rachel, is 42 years old and was sadly diagnosed with breast cancer earlier this month. About a month ago, she felt a lump in her right breast and went to see her PCP who referred her to a breast center for a mammogram/sonogram. The mammogram was normal but the sonogram picked up a small suspicious area which was biopsied. The biopsy came back as invasive ductual carcinoma, grade 1 with a modified Blood-Richardson score of 5 of 9 (tubular formation 2, nuclear grade 2, mitosis 1). There was also extensive DCIS, intermediate to high grade with focal necrosis, solid and cribriform type. Lymphovascular invasion was negative.
ER was positive 2-3+ (80% staining) with clone SP1 while PR was slightly positive (10% staining) at 1+ with clone 636. Her2neu was indeterminate with test score of 2 on the initial test (DAKO Hercep test) but FISH was done and was very HER-2/neu positive with a R/G of 11.3 (Red signals 373 and Green signals 33). The report said that the FISH test showed evidence of ERBB2 (HER-2/neu) amplification. The Her2 karyotype was nuc-ish (D17Z1x1-2, ERBB2x2-27)(20).

Rachel was referred to a breast surgeon who checked an MRI which was negative on the left but on the right showed a 7 cm area that was suspicious extending from the chest wall out to the nipple. The area that had been biopsied was a 1 cm part of this 7 cm area. The surgeon said that the other 6 cm might be DCIS. The surgeon recommended a mastectomy and she ended up recommending a bilateral mastectomy to be on the safe side because of the high risk of a new tumor on the left side.

The breast MRI showed an odd looking lesion in the sternum so a PET scan and bone scan were checked whiich were both fortunately negative for mets. The concensus was that the lesion in the sternum was probably a benign cartilage lesion that had probably been there for many years.

On June 19, Rachel had a bilateral mastectomy with right-sided sentinel node mapping. Five sentinel nodes were checked and they were all negative for cancer. On the surgical specimen, the modified Bloom-Richardson score was 6 out of 9 (tubule formation 3, nuclear grade 2, mitosis 1). The invasive tumor turned out to be 0.8 cm in size with 6.2 cm of DCIS which was extensive. DCIS was seen at two surgical margins (at the lateral shave margin and at the deep shave margin). DCIS was also seen in a large lactiferous duct.

A tiny speck of Paget's disease of breast was also noted near the nipple but the surgeon said that the Paget's was removed completely because the nipple was removed (from the right side) and there were clear margins around the Paget's specimen. The nipple was not removed from the left although a mastectomy was performed on the left side. The left breast was normal on the pathology specimens. Expanders were placed by a plastic surgeon after the mastectomies and implants are supposed to be placed in a few months.

Other items from the pathology at surgery was Ki-67 10% and PHH3 1%; 2/10 HPF. On the original biopsy, it was Ki-67 5% and PHH3 <2%.

Our surgeon reviewed the surgical reports with us and she recommended that she go back in next week and try to get clear margins at the lateral and deep sections. She said that she may need to remove a thin layer of muscle to do that. She said that radiation might be an option but she highly recommended a second operation as she said that the complications from radiation would be riskier.

We met with our oncologist who agreed that a second surgery to get clear margins is the best option. He said that after that he wants to start chemotherapy with Taxotere (Docetaxel), Carboplatin, and Herceptin (Trastuzumab). He called this chemo regimen TCH. He plans six cycles of chemotherapy with each cycle (of the three drugs above) happening every three weeks. He says that Herceptin will be given for one year. He said that he plans to give my wife something called Neulasta the day after each chemo cycle to help support her immune system.

He said that my wife has stage 1 disease but that chemo/Herceptin is needed because she has a strongly HER-2 positive cancer and that the DCIS was so extensive at 7 cm. He also checked a BRCA gene test which should be back next week.

Of course, Rachel and I are overwhelmed right now and are looking for help and advice.

1. Is TCH the best chemotherapy regimen for her? Do we really need chemo?

2. Should we have the second surgery to get clear margins? Would it be better to try radiation to get clear margins?

3. Should the left nipple also be removed during the next surgery because of the Paget's on the right. Does the skin around the nipple need to be removed from the right side?

4. The surgeon plans to put in a neck portacath during the next surgery to be used for chemo. Is this the best type of catheter to have?

I'm sure that I left out some details so please let me know if I can share anything else about my wife's story.
Thank you so much for any help/advice that you can give Rachel.

Thanks,

Benjamin

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Benjamin, first of all, you've come to the right place and I'm sorry for your wife's dx. You can read my stats below. Your plan sounds very similar, except i never had Neulasta. HER2 is a sneaky, nasty beast. I would want to throw everything at it I could. Good luck.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

TCH is now the standard of care for Her2+ patients. It is the right thing to do for any Her2+ person (my opinion) as Her2 is aggressive and sneaky AND your wife is young and has a full life ahead of her.

I didn't have a port but I really wish I did so I cannot comment on that but someone here will.

As for surgery, I think you should try to get out all the cancer. Before chemo is done, I think you should consult with a radiation oncologist and see what their opinion is of chest wall radiation. I would get two opinions. Do this before chemo is over because radiation (if deemed necessary) starts 3-4 weeks after chemo is over. AND if deemed necessary, you have to be mapped out so they know where to radiate.

As far as removing the nipple on the other side, I am just not sure how to answer that question as it is a personal decision.

We are here for you for your wife's and your journey. As you can see from my signature, I am almost 9 years out and did not have the better standard of care that you are being offered (and I am still here). The beginning is a whirlwind of mind blowing information on a disease the two of you never thought you would need to know about. Ask alot of questions to your medical team and us. If you are not sure about something, ask or get a second opinion for peace of mind.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

I can comment on the port for you. I have a port on my chest wall near my bra strap. It does stick but it is under the skin and covered with clothing. It has been a lifesaver for me since I only have one arm to infuse or have blood draws. It is easy for the onc nurses to access and doesn't hurt anymore than an arm stick. I have heard some people have a sensitivity in their port but they may just normally be averse to needles. I'm not sure. I've never heard of a neck port though. That seems odd to me so unless it's something new I'd check that part out.

What an awesome support system your wife has.
Cathy

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Rachel is so lucky to have you on her side, and seeking info and opinions. You can see by my stats that I was stage one as well. It was often hard to explain to others why I was given chemo at Stage 1. HER2 is such an aggressive beast, and we are so lucky that now Herceptin is approved for Stage 1...... that was not always the case. I would explain to others that Herceptin is my wonder drug, but it works best when combined with chemo, and thus TCH. I had a port located in the left side of my chest , and it was placed there 3 days before TCH began. I was worried that it would show, but it was not that noticeable. You'll get lots of support here. Read, ask questions, and gather info.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Oh, I forgot to tell you that I had Neulasta after each chemo. It will rebuild the white blood cells quickly. It has quite a sting when administered, but it does rebuild cells in record time. It is quite expensive, but insurance paid for me.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Benjamin,

Check out the Slamon, et.al. study that Lani posted today. Results were that TH worked as well as TCH w/less toxcicity.
Ask the surgeon if he'll put the port on the inside of her upper arm. It's a great placement, especially for the summer.
i believe getting clear margins is critical. you can test for that, don't really know the results of radiation.
I didn't read your whole post...but getting second and third opinions often helps.

Take care,
Carol

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Benjamin,

My report of study's results was not completely accurate. i trust you'll read it yourself and draw your own conclusions...

Carol

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi Carol,

Do you mean the TH vs. TCH study?

Ben

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi everyone,

Thanks for all the help! My question for tonight is whether Herceptin is enough for Rachel or whether she also needs chemotherapy (our oncologist is recommending the Taxotere (Docetaxel), Carboplatin, and Herceptin (Trastuzumab) regimen. Would Herceptin by itself be enough?

Thank you so much.

Ben

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Ben,
I had TCH and other than taking off work Thursday for the infusion...I worked full time through all 6 cycles. Also worked full time during radiation (had radiation at 7:00am in the morning). I had a Neulasta the day after chemo. My husband gave me the shot. I pinched some of the fatty part of my tummy and he gave me the shot to that area. Totally painless...it works with the bone marrow so it did cause joint and muscle soreness for a few days, but the meds they gave me to counter act this worked great. I never had to miss a chemo cycle...due to low white cell count...so I swear by Neulasta.
I had a port a cath installed, worked like a dream. I had it removed 2 years after I was diagnosed. That is the timing protocol that my onc suggested. I have to admit, I could not wait to get it out, I hated having that bump under my skin. I have a 1 inch scar near my clavicle bone..I am putting scar cream on it and the scar has faded.
In terms of surgery...yes surgical removal is the first defense, radiation is a secondary defense to prevent a regional recurance, chest wall, skin etc. Chemo protects the rest of the body for any small cells that can not be detected by imaging.
This is Her2...throw everything at it you can up front. It's an agressive breast cancer, but the treatments/ medicines available are terrific.
You and your wife are overwhelmed as you should be...the diagnosis is such a shock and the year after is a whirlwind of Dr's appointments and treatments. But it is all doable. We sold our townhouse, moved during the month of my 2nd chemo, had our small lake cottage torn down and built our dream home on our lake. So the year I was diagnosed and treated consisted of Dr. appointments, working full time ( although I am in sales, so I can work remotely sometimes, and I did not aggressively pursue new business, I just maintained what I had) working with an architect and builder, picking out all of the items for the new house and moving. This sounds weird but most of the time, I tried to pretend I did not have cancer....and kept really busy living my life. Our kids thought we were crazy for doing all of this...but I think it helped us get through the experience.
Good luck to you both.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

I can comment on the port and like others I had a Bard chest port which I didn't want but became my best friend and I honestly would recommend it. I think the chemo regime sounds good too but I had a lumpectomy so can't comment on the other questions.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi Benjamin,

Rachel is so lucky to have you be so well informed, and searching for answers. As for support groups, you have found the best!

So sorry you and Rachel have to deal with this, but you will go one step at a time, gather information and opinions (at least 2, I had 4 -- each brilliant but w/a slightly different perspective, which served to add to our ability to make decisions vs confuse us).

Not clear why onc didn't go wide around the margins with first surgery. I thought that was standard.

Not sure why onc chose double mastectomy. My 4th stage invasive lobular carcinoma (9 cm) -- in 1995 -- recurred 3 yrs later throughout my liver.

I would say you need more input from addl oncs before moving forward, in my opinion. You can read my stats in my signature.

In '95 they didn't check for HER2, in was still in clinical trials. I didn't have the advantage of getting on Herceptin from the getgo -- which is wonderful! In '98 (Aug) my husband and I had kept up on bc news and asked for the HER2 test. I was 80% positive. ER/PR borderline. Now ER/PR-... The FDA fast-tracked Herceptin out of clinical trials on September 29, 1998 -- which was most fortunate for me (then available on for metastatic bc).

In '98 I was Taxotere for 8 wks, had scans to make sure it was doing its' job, then added Herceptin. Did Taxotere for 9 mnths. 6 weeks on, 2 wks off -- in '98. Couldn't handle anymore. Took Herceptin for -- 10 yrs. Been off for 5 yrs. I agree that TH has less toxicity. Taxotere is a freight train of a drug, which I chose (having 3 opinions at the time recommending 3 different chemos -- I chose Taxotere because it was the most powerful weapon they had in their arsenal. 4th stage lobular and HER2+ is highly aggressive, and I felt rather than take easier roads, I needed to fight fire with fire. Never had the Carboplatnum (?sp).

I had a port ('95-'97), then had it removed. With recurrence, I immediately put in a port, knowing how tough my veins are and that I could only use my right arm. It was a blessing. Easy access. I kept that port for 12 yrs. Had it removed in 2010. It was in the bra line on my right side, because mastectomy was on left. I would consider putting in a power port -- you could check with StephN I think re that. Believe that's what she had. Was sorry it wasn't around when I got my portecatheter. Advantages with the power port I seem to recall. Check that out... Neck? I feel resistant to that...

I know someone who was in the initial clinical trials. In the '90s. She couldn't handle the chemo and only had Herceptin
-- and she is still here!!! For 4th stage I was told studies were indicating Taxotere and Herceptin. Your situation is different. But the lady who I was just speaking of was also Stage 4 and has done well.

Attitude is 90%. I began a spiritual journey. I went to an integrative oncologist in Manhattan who specializes in supplements. I have been on them since "98 - every single day, twice a day. A project. A commitment. I believe it is a large part of why I am still here. It helps keep me alive. Helped me get through rigorous chemo regimen (developed shingles from compromised immune system and couldn't get chemo till I was over it). That was terrifying, cause I clearly needed chemo to live! I got rid of it in 10 days. Vs. mnths and even yrs. Supplements helped that plus I caught it right off. Seeing so many oncs -- a burden traipsing all over the place, but so well worth it in so many ways.

I meditate every day. I use mantras. I believe in the mindbody connection and the power of our thoughts to help us heal.

I have a few threads around you might want to check out here.

Don't mean to hit you with too much, but do so want to help and inspire you.

If you have more questions, and you will, please ask. We are all here to help. We are a family.

My heart goes out to you and Rachel. It's a lot, but my attitude from right off was, I want to live, I want to be here, and I will do whatever it takes to get to wellness. I was in a process and there would be a light at the end of the tunnel. Stay strong, hug your wife, tell her she is beautiful just the way she is...

My husband went to every chemo tx, every test, every doc w/me. His support and love lifted me up and helped me be brave and determined.

I have a good feeling about you two. You seem to have what it takes.

I know it's head spinning, surreal, etc. Suddenly you have a whole new vocabulary and know more than you ever wanted to about bc. But you are still functioning well and doing your job as a loving husband. Good for you. Good for Rachel! You seem to be doing everything humanly possible to get Rachel through this with informed decisions based on instincts and the willingness to trek around looking for answers -- finding some questions along the way that make you think of things you haven't yet considered. Best of luck in your journey. It will bring you and Rachel closer than ever. That's how it worked for Paul and me.

Stay close and ask away, Benjamin.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

benjamin,

yes, to your question about TH vs. TCH study.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Dear Benjamin & Rachel,

You have come to a great site. We all here have been BC patients Her2+ and have experienced at different levels how this illness behaves and how we deal with it. We all understand how you feel and how terrible this time looks, but listen, we all have gone the same path and there are lots of successful stories here that will orient and support your questions and doubts when you experience the "...and now what?" moment. For what you tell us in your story, seems like doctors are taking the standard procedure to deal with the illness. I had Herceptin for a year after having 6 infusion of FAC, one every 3 weeks, i had a quadrantectomy and radiation as I kept my breast, Neupogen after each chemo to upbring my immune system. It has been 7 years since that, and I am here living a normal and happy life. Have faith, faith in your doctors, faith in your body, faith in yourself that things are going to turn out fine. keep a positive mind and please let us know ow things develop. We are here to listen and support you.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hello Benjamin,

1.) What a circle, a TH vs TCH study is what I based my treatment on in 2008. I could not tolerate the full dose of Taxotere and it was reduced to the same level as in TCH.

Wait until you received the test results from the BRCA genetics before deciding on treatment. I've read that the platinum salts are more effective with BRCA cancers, and so TCH might be a better option.

2. Surgery would be my choice to get clear margins. I am not a huge fan of radiation.

3. The margins were clear around the Pagets on the right and there was no evidence of disease in the left, so the surgeon's decisions seem quite sound about the management of nipple / areola complex.

4. Like most I had a chest port, only smaller - a Bard port which is the child's size. I still have a sensitive area years later that is bothered by the seat belt, and had the Port out in 2010.

Are there any clinical trials that use more Targeted therapies, and less chemo that your wife could enroll in?

You can search on Her2 at clinicaltrials.gov

That is a boat load of information you listed, but many of your wife's pathologies are favorable. The DCIS can be pagetoid spread, stemming from Paget's of the 'nipple' that was established in another area before it migrated back to the nipple. That has a history of not appearing on mammograms, but showing up on MRIs.

Don't agonize too much over the details. Even with her diagnosis she is most likely to complete treatment and will not experience a recurrence. Research, ask questions and be confident the choices you make will be the right ones.

If you check with 10 different ladies on this board, you will find 10 different ways to get to NED, no evidence of disease.

We are sorry your wife has had the diagnosis, but she is very lucky to have you as an advocate. Because of your support she will have an even greater chance of regaining her health and staying cancer free.

Keep up the good work!

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hello,
Sorry to hear about your wife, this is an excellent site.
I would put the port in, easier in the end, saves the veins in your arms.
I agree about seeing a radiologist.
Not sure how your wife was diagnosed as stage one with such a wide tumor and then told to have a double mastectomy and that she has Paget's in one breast but...
question this also:
"Our surgeon reviewed the surgical reports with us and she recommended that she go back in next week and try to get clear margins at the lateral and deep sections. She said that she may need to remove a thin layer of muscle to do that. She said that radiation might be an option but she highly recommended a second operation as she said that the complications from radiation would be riskier. "
While I've had some serious side effects from radiation, I am also alive 10 years after a serious recurrence and 14 from first time.
HER2 is an aggressiveand tricky disease, do more, not less.
I forget if you mentioned whether she was ER+ or not.
Researching is good.
Health and happiness
sarah

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Welcome to the site. I can see you already know there is a lot of knowledge, support and advise here! Your wife is a lucky woman to have you! I had TCH, w/port. The neulasta shots were important for me because even with the those shots my white cells dropped and when that happens you have to wait until they come up to get your next treatment. Gods blessings to you and your wife. Your both in my prayers. Peace

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Welcome to this site. Lots of great experience, advice to share . You will still have to sift through some opinions . i favor aggressive tx for aggressive cancers , including those w/ high overexopression of her2 , like your wifes'. my wife was a 6 on FISH scale. She did not want to know her stage , said " I am Not A Statistic ". Thats' how she chose to fight. So I did the research, I knew the " odds ", and we made a good team. She still hesitates to surf the bc boards. she does , but she is a very emotional person, and lost her first husband, and beloved mom to cancers too young. She , and all of us are PTSD Survivors. Fight or Flight , or a little of both . thats ok.
My wife is one of the " super -responders "to T DM-1 ( kadcyla). She was very late stage iv when she got it in a trial in late 2010. she has been NED ( no evidence of disease ) since Nov., 2011. The QOL ( quality of life ) is the best so far , by far , for her. It is not a cure -all for late stage iv, but is impressive, and its stats will only go up now that anyone who progresses on a taxane , can get it.
I strongly recommend that pts with her2 get tx at a research hospital, w/ bc specialists. or at least a 2nd opinion. tx it aggressively , my wife Lorraines' cancer was kept contained to the liver area for 4 yrs , until t dm-1 could kill it. MGH in Boston flat out saved her life . to get her to t dm-1.
call Genentech in San Fran., , or google www.accesssolutions.com , i think. see about an adjuvant trial. it would be what i would do, if available. a trial will randomize some pts to tdm-1, some to another comparative tx., like TAC or TCH , perhaps. so those who dont get t dm-1 will get an aggressive tx ( ask your onc about comparison drug combo, some pharma co.'s avoid choosing the strongest competitor combo to make theirs look better ) ,. If they progress on TCH , or other taxane combo, they can switch to t dm-1. altho the initail excitement about tdm-1 has faded a bit, even now t dm-1 is the best tx for metatstatic her2 . seems like 30% of late stageiv her2 pts get the super -response Lorraine got, 30% more get a very strong response ( 6 months - 2 yrs ), about 40% do not get a response. as i said thiose stats will go up , and it will prove to be superuor to herceptin alone, and probably current approved combos , as they are not targeted chemos, but system - wide. w/ all the nasty s/e to boot. and better txs are coming soon.
Lorraine has had a power port since 2006, saving her arms and hands from needles, definitely in favor of that too. Good Luck, God Bless !

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi everyone,

Thank you so much for all the helpful advice that you've given Rachel. We're heading back to the hospital on Friday so that our surgeon can try to get clearn margins at the deep and side margins. She's confident that she'll be able to do that.

We met again with our oncologist and he recommendeds the TCH regimen (Docetaxel, Carboplatin, Herceptin) for her HER-2 positive, ER positive, node negative treatment. I just spoke with another oncologist who strongly recommended Paclitaxel/Herceptin. She said that the PH regimen is much less toxic. She also mentioned that some patient go on the TH regimen and leave out the Carboplatin.

Do others have experience with TCH, PH, or the TH regimens. We obviously want a very effective regimen but also one with a lower rate of side effects (short-term and long-term).

Thanks,

Ben

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

My two cents:
Yes to margin surgery. do not debate it. do it.
No to Nipple removal on good side. the grief over losing sexual feeling by removing both (which I did...cos i didn't even know I could keep that nipple or i would have) is huge. Even though the majority of women who have nipple sparing surgery (as did Angelina Jolie and Christina Applegate), do, in fact, end up losing all sensation there despite preventative procedures, it is her duty to try. Or she will regret it later. the loss of sex is just awful i find)
Yes to the port. I was sooooooo loathe to get the port. kicked and screamed. glad in the end. chemo eats veins.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

re radiation or chemo: I quote Jill and others above as they said the right thing: This is Her2...throw everything at it you can up front

Please tell your wife that this throwing everything you can up front at it will ease her mind, if god forbid, later, she has progression of the cancer. It's about her (and you, cos this is happening to you too) having peace of mind if/when it progresses. "I did absolutely everything suggested." That is the most important thing.

I say "ditto" when others send you massive love for your conscientious caretaking of your wife. My husband was the opposite, unfortunately. I told the nurses, for example, that I would have no problem self injecting the neulastin but to my surprise it hurt so bad that I only did it once. My husband works out of town and only returns three days a week. Nobody knew I couldn't self inject. I was too embarrassed to tell anyone i was not doing it. I ended up in hospital for almost a week as a result. So that is great that a person in her house, her spouse, can inject her.


Lastly, a client of mine with a b.c. diagnosis has a good husband like you are. He really impressed me when he said this: "Everyone talks to her with great advice and love and I am so happy about that. But.....this is happening to me too! This is my world, my wife, and I just couldn't go on if we get this wrong." I will never forget that. This is happening to you. As many above are trying to say to you.....we are here for you, too. Any time of day or night please tell us how you are doing.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

speak of the devil!!! (just saying to throw everything you can at it early on):"The impact of treatment in breast cancer is greatest in the early stage, before the cancer has spread to other parts of the body," said Hal Barron, M.D., chief medical officer and head, Global Product Development

This article is more relevant to your wife's stage one cancer than info on TDM1 which is strictly for stage four patients (phil's note, above)
:http://www.news-medical.net/news/201...st-cancer.aspx

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

I can only add that I did TCH and am still here:). As many wise ones told me on this board, it's not easy but doable. I have learned some people tolerate it better than others. The issues I deal with are not related to TCH. I'm sure you will make the choice that is right for you. Wishing you the very best outcome.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi Ben,
I responded on another thread you had posted on. On this thread you had details to Rachel's dx.
The clear margins are a must and now that part is already decided and behind both of you. You have to start thinking of this disease as a huge elephant...how do you eat an elephant?
One bite at a time. First of all you and Rachel have many important decisions to make. So, rest is important so you are clear headed. The stress of being newly dx. is horrific. So take it one step at a time. I was stage 1, also with node negative, very small tumor. Did I feel that I was safer than an women who had a larger tumor? NO I did not. The thought was that while catching this nasty disease early is a benefit - it meant very little to me. As many women before me had recurred - the first two yrs. are very important. (many of them were not given herceptin). I had TCH and it is doable. You and Rachel have to be prepared (mentally) for this fight. Yes Ben it is a fight. You both will fight to get Rachel to NED. (No Evidence of disease. )
Don't be more afraid of the treatment - than the disease itself.
I had asked Dr. Salmon (please take the time to look him up on the internet) as he is the dr. who researched and gave us herceptin. I had asked Dr. Salmon how many cancer (t cells) in a small 6MM tumor like mine. 6mm tumor is about the size of 1/2 of a green pea. His response was millions. Now consider it only takes one rouge cell. That answers all thoughts in my mind of treatment do or don't. Can you believe Ben that only a short time ago early stage women like me and your wife were not approved for TCH ? Sounds archaic doesn't it. That if you were stage 1 early dx. you were not permitted to have treatment. The theory was you didn't need it. This is a nasty aggressive disease. The unknown is the worst part of this journey. I can share and tell you that it is not as bad as you will imagine it. I did work while in treatments. But as I said I prepared for it. I would always have my treatments on a Thurs.
My Neulastra shot was the next day on Friday. Friday, day one after trt, I always felt fine. Sat./Sun. would feel tired, flu like symptoms.

It is obvious that you are a loving and supportive husband. That is going to help Rachel so much. I always said, I just didn't get breast cancer - my husband & son also did. The entire family is effected. I was fortunate that my husband and son were supportive & loving.

Once Rachel's surgery is behind her you will feel more secure.
Please feel free to reach out with any questions.
Lets us know how her surgery goes.
Saying prayers for strength for both of you.
Kind Regards,
Jean

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

All here have given you excellent advice, Ben. Becky, Nora, Jean, and every one who has posted honestly.

First -- Dennis Slamon (typo Salmon cause I know Jean knows well). I've met him in an exam room in Calif. My husband talked with him from NY when we weren't even patients. He is open, extraordinary and passionate about his work. If not for his tenacity, many would have died. Probably me included. I've hugged this 6"3" man (standing on the step of the exam table in short heels -- face to face) and I've thanked him for my life!

My 9 cm tumor was lobular vs usual ductal. Highly aggressive. Didn't know about HER2 or Herceptin in '95 when first dx. The standard of care back then was Adriamycin 4 and CMF (a combo) x 8. Followed by no more scans. Ever. Just every 3 mnth blood work, which was how "I" found my metastasis in '98. My tumor markers were still normal, so we learned we can't depend on TMs w/me.

An important lesson I've learned is that cancer is not our worst enemy. FEAR IS. Not easy, but let go of the fear. Sure, it's scary as all get out, but it's a process. One step at a time. Surrounded by great advisers, remember YOU are a part of the Team. We are talking about Rachel's life -- she is the one to ultimately make decisions, with your help and the wisdom of the experts along with Sisters who carry much experiential and gleaned insights. You learn a lot from the chemo nurses and the chemo patients over and above what the docs have to offer.

Fear and faith cannot occupy the same space. So I proceeded with love and KNEW I would survive despite all the spooky statistics. I BELIEVED because of this powerful Knowing I carried from my gut. Chemotherapy was my ally. My life line pulling me through rough waters. I did not hate it. I do not hate cancer. It is a stupid malfunction of the body. Yes, sly and evasive, highly aggressive -- just keep one step in front of it. Proceed with certainty that you are on the right path. If signs pop up that prove otherwise (w/the next set of scans and/or blood work), alter course. Move to Plan B.

I am a TH girl. T knocked me for a loop. I took massive supplements from an integrative oncologist in Manhattan that I believe helped save me. A part of the recipe for prevailing!

I envisioned myself far far into the future in vivid detail at a specific family occasion. I saw myself there, joyful and surrounded by those who are my beloveds. And I lived that dream 14 years later.

Diagnosed in '95 I did not have the advantage of Herceptin, or even the knowledge then of its existence. When I recurred in '98 as I've mentioned in a previous post, I went in search of Herceptin and remained on Herceptin alone for 10 yrs.

I had 3 separate independent radiologists read my scans after 8 mnths when I could no longer tolerate Taxotere. I never give up, but my body couldn't handle it, and that was obvious to my main onc who believed at that point there was no reason not to believe that H could keep me STABLE (NED). And so it came to be.

I've been STABLE since '99 (after 9 mnths of Taxotere and 10 yrs of H). I have now been off of H for 5 yrs. Still here. Almost 20 yrs since original dx.

A power port in the bra line is what I'd do knowing all I do at this point. My veins are not easily accessed. They're thin and roll over, collapse, blow out. The port was a piece of cake. 3 yrs ago I had my 12 year old port removed.

I absolutely agree that those closest to us actually go through the experience with us. My husband (now married 47 yrs) always liked to make things right for me in life. Fix things. If I complained about another day of rain, just saying, he'd respond, Well, there's nothing I can do about that. I wasn't hoping he could. Just needed to vent a bit.

So when I was dx, he was devastated. He felt so helpless. He did the laundry when I was too weak, he did the marketing, ran the errands, dealt with the insurance company SO I COULD FOCUS ON HEALING -- and he was happy to be able to contribute in whatever way he could. He came to every doc appt, every test, every chemo appt (since '95). It was me assuring him that I was going to be fine. He tried to believe that, but the cynic in him too often won out. I just kept smiling (yes I was joyful and serene even midst chem) cause I KNEW from my core that -- in the end the heroine lives! I'd had a dream!!

Many offered up prayers for me, lit candles, envisioned me in a radiant white Light -- in accordance with their beliefs. I accepted it along with all the love offered readily. I believed all that positive energy stirred up miraculous things.

When I first bought books all about breast cancer (mostly written by docs) I was appalled at the statistics. I closed those books. Gave them to my husband/lawyer who was hungry for such hardcore details, and I turned to the psychology section in the book stores, where I found books about spirituality and healing, outliving cancer and positivity.

Less than 15% survive what I had? Horrifying! But -- who are those 15 people who survive? I would be just like them. Shut out the fear which can eat away at your Soul and corrode your insides. I would be an example for my daughters to see how to face adversity, and remember me as starring down cancer with grace and conviction. I would be like an Olympic Gold Medalist, see the goal, work toward the goal, dream the goal, live the goal.

I would use the energy of love, compassion, generosity, kindness, caring for others, forgiveness and genuine gratitude for the many blessings I had. My mother with Alzheimers quickly taught me to humbly value the gifts we all take for granted. I felt lucky! Young, handsome, robust and successful Christopher Reeve had just fallen off his horse and was paralyzed from the neck down. Couldn't breathe on his own to speak.

I could walk and talk, feed and bathe myself. I was blessed. I was grateful for these gifts, the gift of my wonderful family, my supportive husband who took on our battle as his own, for my daughters...

Every single day I talk to my body, believing in the mindbody connection since the '70s and living it a few x personally in the '80s. I read everything I could get my hands back then. I watched PBS specials about prestigious universities and hospitals that were conducting studies about the link. So from day 1 of dx I instructed my body, about 5 x a day, every day, till this very day -- HEALTHY AND WELL. NO MORE CANCER.

I KNOW that the body hears everything we think, say or whisper. Its job is to follow instructions it receives from us. So I was explicit in my Expectations and Intentions. I also believe the Universe hears everything we think, say or whisper. And it too responds IN KIND. Positivity begets more positivity. Whereas negativity just draws more of the same to our lives.

So we are incredibly EMPOWERED. We must KNOW this and embrace it, use it for our own wellness.

Rachel and Benjamin (such strong names!!) we are all with you now on your journey. We're invested in you both. So please keep us informed as you go along. We've all been there and are here to share and help one another. In Life, we're here to learn to love, to grow and evolve and become better than we were yesterday and to help one another.

My life was enriched by this unwanted reality, I must say. I am more than I ever was. Took a path I'd never dreamed of setting foot on, and I think you'll come to know what I mean by all this odd talk.

Stay strong for one another. Hold on to one another. Let your love bring you joy and peace. 2 heads are so much better at getting through this than 1...!! (And God blesses the caregivers!)

Love,

Andi

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi Ben,
You have received some wonderful advice here, there isn't much I can add to it....
So I will just add my prayers to the mix. I'm glad Rachel has you.
All The Best
Leah

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

It seems to me your wife's oncologist is following standard treatment guidelines. Radiation of the area could affect vital organs (heart/lung/...) beneath it. It's been six years since my double mastectomy. I did not 'preserve' anything. As a matter of fact, after the BRCA gene test and another family member going through HNPCC-related cancer treatment, I did away with my ovaries and uterus as well.

My husband and I have found ways to enjoy our intimacy more than ever before...

And I've been feeling healthier more than ever before ...

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi there.

I don't normally do this, but I want to recommend my blog, http://www.butdoctorihatepink.com. If you go back to the first pages, I describe my entire experience from mastectomy through TCH (and more). She may be interested in reading the TCH sections - I started that chemo December 2009. I did the same initial treatment as your wife has been proposed, so she will get some insight as to what to expect from one woman's perspective.

I am a few years past TCH now but I didn't find it too difficult a regimen. I guess I should go back and read it to find out if I really felt that way at the time. :) I think TCH is standard of care so I'd stick with that, it really isn't that awful and HER2+ is sneaky, as I subsequently found out. (I am now metastatic).

I did not have a port and I'm glad I didn't. I have strong veins and it was easy to access me. I have since had a port placed and dislike it very much. I am glad I made the decision to do my first year without a port. Most people feel differently than I do but one thing is I am very thin and I think a port is a different experience when you are super skinny. It sticks out about 2 inches from my skin and snags on stuff and just gets in the way and hurts. I've had more toxic chemos since that made it a necessity so I had no choice.

That's a minor thing. The question about the surgery - make sure you research the odds of contralateral breast cancer. It's extremely rare and because of that, I did a unimastectomy. While cancer has appeared in other parts of me, it has not in my other breast. I would stay away from unnecessary surgery myself, but there is also a mental health aspect to it. Some people just feel mentally they need to remove even the smallest risk.

I don't know what is left on your wife so I am just going to tell you about me. I am also glad that I still have one breast as I have had nothing but back and shoulder problems since the mastectomy. I also have phantom itching in the mx side that has driven me crazy. I also am glad I have some feeling in one side as the mx side has been numb for four years. So leaving one breast has been a good decision although esthetically it is less pleasing.

I am just sharing my experiences and thoughts. Everybody will come to their own ideas and conclusions based on their own needs and the information they gather. There is no right or wrong answers, unfortunately, there are only shades of grey and you will do the thing that you find the best based on what you know.

It is good that she is early stage and I am sure that everything you do will be successful and she will stay that way.

Best of luck to you all.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Ben,
First of all, what a great husband and partner for your wife in this journey. The regimen you just outlined sounds identical to what I just finished back on May 22. The only difference I had a lumpectomy back in December 2012. My cancer was estrogen +/progesterone + and Her2 neu positive. I have the port (great device - even though I cried the entire time on the day I had it placed), chemo - TCH and I am now about halfway through with radiation.
I did lose all of my hair (but is now slowly growing back), my fingernails are funky looking and yes - as my nurse put it, "TCH is not the hardest chemo drug, but it will kick your butt" - she was 100% correct and then some, but as so many of us have - I made it through.
Even though it is overwhelming right now, you seem to be sorting it out and will be well informed to make the best decision. This discussion board is also a wealth of information and a source of comfort.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Benjamin please know that my thoughts are with you and your wonderful wife Rachel. You have definitely come to the right place. Right now you have a lot to adsorb and I know it can be quite daunting. But the fact that you’re on this site tells me that you’re up to the task. Try to make all her appointments take notes and ask lots of questions. I live in Maryland please don’t hesitate to ask if there is anything I can do for you.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

I have bookmarked this thread as I am so proud of all my sisters on this page. My heart is full to bursting when I read with pride the advice and support on here. Wow, wow, wow to jean and coolbreeze, jackie07, and andi and all here.

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi Ben~
I had TCH (finished T&C in Dec). Taxotere was a lot harder on me than the Carboplatin. I am still having Herceptin until August 15 - that will be 17 treatments. I had a double mastectomy and did not require radiation. I also have a port - which I have been very grateful to have. Previously, (before the port) when I have had infusions, the nurses have to run the drug slowly as the drugs were so hard on my veins. The port makes it much easier. People have told me that can't even see it - and at this point it wouldn't matter to me if they could. Regarding side effects - each person is so different in how they handle each drug. My doc told me that I had every "weird" side effect that Taxotere could offer. But there are people on this forum that had very few side effects from Taxotere. I did work full time (other than a day or two following my infusion). I would get a Neulasta shot the day following chemo. My oncologist recommended taking an Aleve and a Claritin at the time of the shot. I didn't have the deep aches that many have had from Neulasta.

Sadly, this isn't a journey that any of us wanted to travel BUT you and your wife will get through it. My husband has been the greatest support for me this past year. Your support will mean so much to your wife (I'm sure it already does). Best of luck to both of you.

Jeri

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Ben,

It is just beginning of your journey so be ready for the ride of your life!!

Because my tumors were large in size, in my lymph nodes bases on physical exam my treatment was a little unique it seems. I had TCH before surgery to see how it would effect the cancer, so I was a walking laboratory which BC doctor thought how cool!! At the time I did not think anything was cool about BC.

I was told my a couple doctors sometimes people with for example stage 1 cancer do not hit the cancer hard because it isn't as aggressive. The doctor told me because we have been just as aggressive as the cancer she felt better results in the long run for me vs. a less aggressive cancer and less aggressive treatment.

I say you want the BEST long term results for you and your wife so hit it as hard as you can with your treatments!!

I have 1 son and he is the love of my life and if it was his life in my hands I would do all treatments available to him which will SUCK this year but hopefully pay off for the next 20 years.

Side effects are temporary cancer can kill you! I say TCH would be the best way to treat the cancer and then if anything would happen you will have no regrets in thinking I jsut did the TH treatment I should have done the TCH.

Hope this all makes sense!! And I am so sorry for the journey you are about ready to go on. Soak up every good day you have ahead and if it's a rough day the next day remind yourself its a new day!!

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

My question is I had 6 mo. of TCH and 6 mo. of Herpecin. My oncologist said the two totaled would count as having Herpecin 1 yr. total. Is this correct?

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

For me yes the two together will equal a year!

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi everyone,

Some good news - Rachel went back in last Friday for another operation to get clear margins. There was DCIS at the lateral margin on the right mastectomy so Dr. Chang (UCLA) went back in and clean that margin out and found no abnormal cells. So she has cleared us to move onto the next stage of Rachel's care - chemo.

The plan is now to start chemo Monday July 22 and our oncologist is recommending TCH which sounds like the protocol used by most of the oncologists at UCLA including Dr. Slamon. I've seen that other recommend PH (including Dr. Edith Perez at Mayo) as a similar protocol with less side effects but our team here says TCH is the first choice. Rachel would get six rounds of TCH with the Herceptin continuing for a full year.

We're also expecting to hear about the BRCA results tomorrow ... fingers crossed.

Wondering what others think about the chemo regimens and whether TCH is the best first option. Our oncologist says it's safer than the older regimen (that including Adriamycin) but still very effective.

So much to digest ...

Ben

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Good news Ben! TCH is also the usual protocol given in Australia as well, and gee, I wish it had been available when I was first diagnosed nearly 13 years ago. The stats coming through now on this combo of TCH are very good in terms of survival after 8 years. There's been a number of members here who have recently celebrated 8 years clear, and many were on the TCH regime when first diagnosed.
Best wishes
Marie

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

I think TCH is standard of care now; it is easier on the heart that an adriamycin and herceptin combo. Your wife should do well on it and like many here say, it is quite do-able. To be honest, I had very few side effects on it. I worked, went on field trips with my kid and did my normal routine. Towards the end I was pretty tired and achy but nothing terrible. I drove myself to every appointment, and continue to do so. It is not like the movies show, that's for sure; I wasn't puking and sick. I am in the norm although of course, there are always exceptions.

The worst part of the treatment was the nasty taste changes. She'll have to find stuff she likes to eat on it - I found I could still taste sugar so I became a cupcake-aholic when I'd never eaten sweets or cake in my life before. :) Lemon drops and jolly ranchers are also helpful. Constipation is also the other main side effect so she'll need to watch for that - get Senekot S which has a motility enhancer as well as stool softener. Of course, she should drink lots of water and a high fiber diet will help with the constipation. She is very unlikely to be nauseated but they will give her anti-nausea drugs and I recommend she take them the first few days after chemo until she knows she'll be okay. To be honest, I have been on seven different chemos now and only one even made me slightly sick, and that was Gemzar and she'll probably never have to take that one <knock wood>.

Oh, and I'm not a big natural supplement type of person but I did find that l-glutamine helped with neuropathy. If she starts to get that tingling in her fingers and toes, it's worth looking into. There have been studies done at UCLA that shows it can help, plus it's good for your gastro tract. You dissolve the powder in cold water and take it a few times a day, on the day of chemo and a couple days after. Like I said, I've been on a lot of chemos and I did start to get neuropathy but it went away after I tried the l-glutamine. Of course, ask your oncologist before you take anything.

Good luck to your wife. I think she's going to find it much easier than she expects. Losing your hair is the most difficult part but it grows back as soon as chemo is over (herceptin doesn't affect hair) and it'll be over before you all know it.

*hugs*

Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)
 

Hi everyone,

Rachel starts chemo tomorrow (six rounds of TCH). She's a bit nervous but feeling strong. Her oncologist prescribed Decadron 4 mg twice today and twice the day after chemo. Zyrtec daily and Neulasta to be given Tuesday. We're doing a lot of praying and appreciate others who are doing likewise.

Best

Ben