Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

SpecialK

Blair - Of course, any studies prior to 2000 would not have involved Herceptin because it was not routinely prescribed to the regular patient population, it was still in trials.  Also, these trials were with anthracycline chemo and CMF, not TCH.  The timing parameters were <21 days, and >21 days in the last study.  If you wait until after the Penn appt. you are probably talking about 90 days until starting.  I think this last study was not really measuring DFS and OS for patients that far out.  All of my docs were becoming concerned that I was starting chemo as late as I was, but they were also concerned about my healing from the 5 surgeries between 11/1/10 and 1/14/11.  Granted, my stats are more concerning than your wife's as I had positive nodes and LVI.

suzieq60

Blair - I had my first chemo just under 1 month from surgery. My onc leaves 1 month between treatments to allow the body to heal, so when I started rads, it was a month after I finished chemo and then I started Arimidex 1 month after rads finished. End of December is a long time, or it will probably be January by the time it's organised.

Anonymous

Blair-every onc I interviewed said her2+ folks should not look at anything before 2006 in reviewing out treatment because with approval of herceptin, it totally changed our method of treatment.



My tumor was .8 x.8x 1 cm. Before they knew I was her2+, they told me I was not a chemo candidate. Just take tamoxifen. Then the final part came back and it all changed.



Unfortunaely, until they prove otherwise, If you decide on herceptin, chemo is part of the package that they feel makes it work better.



I totally stressed and ended up with all the symptoms of panic disorder, which ended up putting me on a low dose blood pressure medicine and an anti-anxiety drug. Now, at one year since the bad mammo, I look back and realize I totally stressed over things that did not happen.



For example, I was unnerved about chemo. Turned out to be completely a waste of worrying. However, the infection I developed in my reconstruction, causing everything to be removed was something I didn't even think about. Neither was the totally unrelated kidney stone I passed while still on chemo. Virtually all the chemo related things I had read about didnt happen, and everything I didnt anticipate did. It is laughable now.



Two of the oncs I talked to recommended the weekly taxol protocol. Apparently it is used that way in germany pretty often. Here it is considered off label. It is much, much easier to handle. i had no nausea, minor tiredness, a little joint pain for the first couple of days, but not bad, and hair thinning.



I saw the onc I didnt end up with due to distance when I went to begin a study she is part of this past week. She asked me how the taxol went and when I told her she noted that is why she likes it also and since we only need it to make the herceptin work better it makes sense to use it. Thisnis a nationally known breast cancer oncologist at the IU Med center. She is wonderful.



If your wife would have questions I could help with, I would be happy to call or give you my number.



And my heart appears to be fine while on the herceptin. i am monitored every three months. My lvef had gone down a smidge at the last one in September but still normal. I will be on herceptin until next march.



I will note, the third onc I inerviewed wanted me to do adrymiacin plus carboplatin and taxol for 18 weeks. She was the first oncologist I met with and very young. The other two oncologists thought she was nuts and nothing in my protocol suggested that level of treatment. I went with the easier route based on two out of three, lol. I hope they are right!



I hope this helps a little. Kind of feels like during my first two months, I researched thesis papers on my pathology, treatment, and reconstruction, with a special supplement on pseudomonal infections thrown in. It was exhausting.

BlairK

Dear SpecialK - I can't find any comparable studies involving Herceptin.  I would be only guessing by saying that perhaps with my wife's 3.5 mm tumor that it may not make as much a difference as with a larger tumor over 1 cm or over 2 cm.  Maybe those on my thread can find a recent study and post it.  In the meantime, I am going to take the bull by the horns.  I am going to give my wife Monday to call Penn and get things speeded up.  Then I am going to call Penn myself on Tuesday.  I wonder if a "New Patient Coordinator" really would understand the situation and both the dilemma in making such a decision and the need for some urgency.  Do you think I should try to talk to a Physician Assistant or somebody with a medical backgroun in the Penn group to try and get things speeded up?  I have kept the lines of communication open via e-mail to both the first oncologist and the second oncologist.  I am taking the side of the first oncologist and think my wife should go ahead with the chemo and herceptin and do everything possible to reduce the risk of reoccurrence.  Then again I am the one who is losing sleep over this as it is early in the morning.  Or maybe it is my jetlag from coming back from China.  My wife's OB-GYN told my wife when all this started that the last mammogram they had a record of was five years ago although my wife claims she had one in the interim period.  I guess it is a moot point now.  I just do not think she can afford to do this with this situation.  And her comment "if I die it will be your problem" continues to bother me.  What about the two small children who cling to her all the time.  I hope she will think about that too.

BlairK

Dear susieq58 - When was your first chemo and what was your diagnosis at the time?  I see a 5.8 mm HER2 positive IDC in October 2010 and a 1 cm ILC in October 2009.

BlairK

Dear fluffqueen1 - Thank you for your long detailed post.  You are 1 cm triple positive so again the treatment decision is a little clearer.  However, I am very sure that everyone who has posted to my thread went through some sort of agony to make the decision and come to terms with it.  Again, I am keeping the lines of communication open to the first and second oncologist.  And I must maintain good relations with the first oncologist because he is only 15-20 minutes from our house and again has won a "best doctor in New Jersey" award.  But the second oncologist won that award too.  I have already made up my mind that my wife is best served by going ahead with chemo and herceptin.  I hope she will see my viewpoint that the risk of the cancer coming back is more dangerous and scarier than the risk of the side effects as unpleasant as they may be.  I hope at a minimum she will think of our children.

BlairK

One last key comment.  I am very tempted not to go to Penn if they can't expedite the appointment especially if my wife begins to come around to having the chemo and herceptin.  If my wife does begin to come around to that viewpoint, I am not sure of the value of Penn versus the harm they could cause if they delay our appointment too much.  What does everybody think?

suzieq60

Blair - my first cancer was triple positive lobular (quite rare) 1.1cm - I started TCH on 18th Nov 09 and finished on 10th Mar 10 (my son's birthday). Herceptin finished in Dec10. When I went back for my annual checkup in late Oct 10 - they found the other cancer in the other breast which we later could see on my previous mammogram - they hadn't reported it as it only showed on one view. That one was not HER2 but was also highly hormone receptive. It was also only grade 2 and very small. No chemo required for that one - very interesting the chemo hadn't done anything to it except maybe keep it under control. It was ductal and a type that is usually found in lots of lymph nodes and my nodes were clear!! I had rads on both sides as I preferred lumpectomies even though I was advised to go for a BMX after the second diagnosis. I want the Arimidex/Aromasin to have a chance to work and seeing the second one looked like it was already there, I decided to be conservative. I will have no choice if there is a next time.

You may have seen LadyGrey's bad reaction to her first treatment. If your wife does go ahead, please make sure you find out how we all coped with side effects before she starts, so that you can be prepared. I'm sorry we didn't give LadyGrey all of that information.

All the best - you are a fantastic husband.

Sue

2ns_Jenn

Blair -
For what it's worth, the 4th oncologist I saw also consulted with Dr. Gradishar (Director of Breast Oncology, Rober H. Lurie Comprehensive Cancer Center) and here was the response (from Sept 2010):

"There is really no data with these tumors less than 5 mm and you correctly point out that NCCN makes no statement on rx for less than 5mm.  My approach would generally be to give endocrine and call it a day.....there are those who would give herceptin with chemo to anyone with even a 1 mn tumor.  If push came to shove would consider endocrine plus herceptin....though except for MBC (tandem trial), there is no adjuvant data.  Dana farber is doing a subcm trial with herceptin and taxol...no data yet."

All my best,
Jenn

Omaz

Hi BlairK - Did you see this poster about small HER2+ tumors? LINK

suzieq60

Omaz - I think that is the same retrospective study I posted earlier - page one?

Sue

Omaz

You're right Sue, looks like they published the paper in 2009.  I got distracted by the poster format, nice presentation.

Anonymous

Blair....jenn noted above the taxol/herceptin protocol. If your wife decides on treatment, I would seriously ask about that. Maybe email your friend. The side effects are much less, and like it was mentioned, Lady Grey has had a very bad experience.

BlairK

What happened to the Lady Gray?  I must have missed that as she did not post here after her first chemo and herceptin treatment.  I miss her here and her colorful writing style.  Please update.

BlairK

I woke up at 3 AM from my jetlag and hit upon a solution.  I have written about to the first and second oncologist and also to the friend and oncologist at Dana Farber.  My idea is to start Arimidex ASAP after Thanksgiving while waiting for Penn which could take until December 27th.  At least my wife will start some treatment which is within NCCN guidelines and within 6-8 weeks of surgery.  If Penn votes for chemo then they stop the Arimidex and go back to the first oncologist and start chemo and herceptin.  If Penn votes against chemo and herceptin then at least my wife will have a headstart on Arimidex and it is within NCCN guidelines and 6-8 weeks of surgery.  I am kind of proud of thinking up this possibility.  And my anxiety caused by doing nothing and waiting until December 27th possibly will at least be lessened a little bit.  Post back with your reactions to this idea.  Happy Thanksgiving.  I am going to rest and take my family on the badly needed vacation.

suzieq60

Blair - LadyGrey had a nasty reaction to her first treatment - sounds like they didn't give her the correct meds - see her thread.

Sue

BlairK

Dear susieq58 - I read about TheLadyGrey's bad experience.  How awful.  At least she did not lose her colorful writing style.  I hope she will feel better soon and have a Happy Thanksgiving as I hope everybody on my thread will have a Happy Thanksgiving.

BlairK

Both the first oncologist and the Dana Farber oncologist wrote back that my idea, is shall we say, not a good one.  They both advocate pushing Penn to see my wife sooner as soon as possible.  And they both think we should make our own decision as opposed to putting a lot of weight on Penn's recommendation.  Penn's recommendation will be additional information for making the final decision not the decision itself.  Both the final decision and the wait are agonizing and causing me a lot of anxiety.  But I think I owe it to my wife and kids to give them a peaceful relaxing vacation for 5 days.

Omaz

Have you called Penn and explained the situation and asked to be scheduled sooner?

BlairK

Dear fluffqueen01 - The Taxol/Herceptin protocol involves 12 treatments at once a week versus TCH with Cytoxan at 4 treatments at once every three weeks.  The side effects versus the frequency are both considerations.

BlairK

My wife went today to Penn and met the New Patient Coordinator in person to give the slides, pathology report and other information in person.  They still have not moved up my wife's appointment but at least my wife is taking it seriously and told the New Patient Coordinator in person about the urgency in her situation.  My wife's brother was kind enough to do all the driving.  My wife will do the MUGA scan and other body scans after our vacation to be ready if she decides to go for chemo/herceptin.  TheLadyGrey experience has me scared a little but it sounds like she had poor side effects management.  More later.

TheLadyGrey

BlairK, I can't help it.  I HAVE to say this:

If she goes forward with chemo/herceptin YOU have to be the bad guy.  Your wife seems a little timid -- for example, she was worried you would anger the breast surgeon.  

I do not mean that in a mean way AT ALL -- timid is not a word most would use to describe me but when in this position, one is so vulnerable it is hard to be as assertive as one should be.  Had it been my daughter instead of me, I can assure I would have walked out of there with prescriptions for every single possible layer of side effect, to be filled as needed.  I would NEVER have taken the oncologist at her word if my daughter was the patient -- I would have gone in loaded for bear ready to take out the first person who I perceived came between me and her safety and comfort and I would have jumped down the phone and ripped the vocal cords out of the on call doctor who dealt with me.  

I believe THAT is the attitude you MUST be prepared to present.  I think the patient HAS to believe in the doctors and staff in a way that you -- her advocate -- do not.  

Walk softly and carry a big stick.   

SpecialK

TLG -
Unfortunately I think you were sold a bill of goods by your oncologist.  To be told that you have zero chance at nail issues, neuropathy, etc., and that nausea/vomiting absolutely will not be a problem is whistling dixie.  You know that now.  You were not properly medicated before chemo and after, and that is a shame.  I am glad that you have posted about exactly what happened because it will allow those who come after you to be better prepared.  I am not sure there needs to be an adversarial approach, just a fully informed and prepared one.  I am hoping you are feeling better and so glad that your fever broke and you can keep some food down.

3girls

BlairK  Had an appt today at Dana Farber initially my path was ER+ PR+ Her 2 -  2 weeks ago they told me they saw a second population of cells that was ER+ PR- and HER2+.  My positive sentinel node was the 1st population.  They presented it to the tumor board and they recomended treating it with chemo and herceptin.  I asked them the size of the population but they don't know- but still reccomend treating with herceptin.

Anonymous

Blair, regarding taxol/herceptin vs. Tch....taxol can be weekly or once every 3 weeks like tch. The weekly has fewer side effects because it is a smaller dose once a week as opposed to a dose dense infusion every three weeks. At least ask them why they are not offering it as an option. Since chemo is only needed due to the belief it works better with herceptin, but no one knows that positively yet, then it seems to me the chemo with least problems and se's would be preferable, rahter than the standard protocol. I went in at 8:30 a.m. And was done by noon. I used that day and the next to get all my errands completed as I felt great. The third and fourth day, I was usually tired and didn't accomplish much. By the fifth day, I was pretty much back to normal. Some joint aches off and on. Hair issues. Iced my toes and fingers....still do on herceptin just in case. So far, ok.



Lady grey-Welcome back! Sounds like you have your fighting spirit coming back. You are so right....we must be our own advocate. Every time they offer me a drug, I fill it! Lol. I could make a fortune on the black market if I was into that kind of thing. On the other hand, I like knowing I have a nice supply just in case. At the risk of sounding like a broken record, please ask your doc about taxol also. I just don't understand why docs don't recommend it for those of us that dont really need the chemo component. Two out of the three I interviewed did, and one is nationally known at the Indiana University Simon Cancer Center, and only treats breast cancer. She travels all over presenting at the major cancer conferences. Neuropathy is the worst side effect and while mine was really mild, I think most would take achy joints over puking any day.

suzieq60

fluffqueen - you really don't need to ice your nails on herceptin - it's the taxol/taxotere that can cause the nails to lift - mine did in spite of icing anyway - but I did grow my nails again after years of biting them.

bucky317

Fluffqueen0--  Hi there!!!  Our cases are very similar!!Your tumor was the same size as mine (8mm) My BS didn't think I would need chemo either, ( no lymphovascular invasion, neg nodes, her 2 neg) just the "5 year pill" until....  my oncotype dx came back as equivocable for Her 2. That changed everything!!!

Anonymous

Susie-my onc said the same ting but nails can get bad with herceptin too, so I decided I have been lucky so ar, I am just going to continue to the end! I'm superstitious.



Bucky-the BS office caleed (twice) to tell me er/pr+, and just tamoxifen. Went to first oncs office that afternoon, to do Q and A and get script for tamoxifen, only to have her launch into the whole her2, 18 weeks of chemo including adrymiacin, etc. I told her she had wrong person. Called Bs office and they had been trying to reach me to tell me the latest update. That poor oncologist didnt stand a chance as I was totally freaked out. Thank heavens I taped the conversation. BS called the next morning beside herself that it had slpped through the crack.



After that appointment, we met my 25 year old son at Outback. He asked about mastectomy date and said "ok, I am going to see my girlfriend and will be back on Sunday before surgery on Monday. I burst into tears, told him I couldnt believe he was leaving the weekend before my surgery. Poor guy also freaked saying I wont go...dont worry. Sheesh. I felt so bad.



I had been holding on up to that point and the her2put me over the edge. I couldnt eat, lost weight, heart was pounding in chest, cried all the time. Ended p on an anti-anxiety med which helped immensely.



I dont think I will ever be over the worry about that. I understand I could get a million other things, be in an accident, etc, but I am fixated on the her2 now.

BlairK

I have read all your posts and thank you very much.  I am trying to wrap up work before our greatly needed vacation.  Welcome back TheLadyGrey.  So as I wrote yesterday, my wife went to the second oncologist's hospital in New Brunswick NJ to get the pathology slides and their report and then drive all the way to Philadelphia to deliver them in person to Penn.  She spoke to the patient coordinator in person and even saw the legendary oncologist and head of the department waiting for the elevator but was too shy to say anything (this is the oncologist we or she will meet with when our appointment is hopefully moved up).   Penn should have reviewed her pathology slides and reports and hopefully today she will get her appointment moved up sooner.  One other interesting thing.  Somehow her Breast Surgeon found out about the recommendation of the second oncologist against chemo and herceptin and they had, let us say, a "discussion" (I do not want to call it a "cat fight" - that would be going to far).  I do not know how the breast surgeon found out about this, maybe from the first oncologist.  The Dana Farber oncologist and the first oncologist wrote me additional nice and useful e-mails.  They think too many opinions can be confusing, Penn should be pushed to move up the appointment and the decision is difficult but must be made based on as much facts as we have.  I firmly believe in the chemo and herceptin route and doing everything possible to reduce the risk of the cancer coming back.  My wife little by little is edging toward chemo and herceptin.  Nobody can blame her for being afraid of the side effects.  After our vacation, she will have the MUGA scan and other scans required prior to chemo and herceptin.  And the target date for chemo and herceptin if my wife makes that final decision is December 20th - three weeks behind the original schedule which in light of the agony and torment this decision has caused is not so bad.  The second oncologists hospital produced its own pathology report and I read it.  For the invasive ductal carcinoma, it says 3 mm instead of 3.5 mm and the other two foci are 1.2 mm and 0.7 mm.  It states that there are isolated nests of cells in the 3 mm foci and isolated cells in the other foci.  Nobody seems to be able to tell me what that all means.  Does it mean as cells and nests of cells it has a higher potential to spread into the bloodstream or is it a better thing.  That is all.  Our vacation starts tomorrow and Happy Thanksgiving to everybody.

bucky317

Fluffqueen - my sentiments exactly!!! Like someone said before on this forum. We will always have that "mafia" feeling. Meaning yeah, those criminals (cancer) may be put away for good, but we will always be looking over our shoulder watching!!! Hopefully, over time these feeling will diminish. Ativan is my friend

How horrible that you had to go through all that!!!