TRIPLE POSITIVE GROUP

tadover

FleurDeLis49,

Sorry you had to join us. I'm single and live alone, just me and two furbabies at the time of my treatments. My elderly mother lives nearby, but she wasn't really able to help much, but I knew if I absolutely needed her I could depend on her. I worked full time during treatments, but I don't have a high stress job either. I took care of my house and yard work, maybe not as quickly or neatly as normal, but it got done. I took naps during lunch hour a lot and tried to schedule my treatments so that I could go directly home and rest, but really didn't have the awful side effects that a lot of people do. Maybe you could wait and see how your first treatment goes and go from there. Of course if you have to have something set in stone before treatments start, I can understand that too. We do what we have to, to make it thru whatever we face. Good luck, whatever you decide.

docmama

Hi Tadover, I see you're on Nerlynx. How have you been doing on it as far as Side Effects go? Is the diarrhea as bad as they report? I'm considering going on it, but my MO wants to wait for more information to be out there. I'm hormone receptor negative, HER + and have my last Herceptin infusion next Friday. Any information you could share would be greatly appreciated!

tadover

hi docmama,

It really wasn't that bad, to me at least. I finished the clinical trail for it in February. They started us off on a certain amount of Imodium per day and then tapered it down. I eventually stopped the imodium all together. But according to the nurse coordinator over the trial I was one of few that did that, most stayed on the Imodium as needed until the trial was over. But as you know we are all a little different in our side effects. I also didn't have really bad side effects with the other chemo. No nausea, loss of appetite or anything like that. I don't know if I've got a strong stomach or digestive tract, but whichever, I tolerated all my treatments well.

ElaineTherese

Interesting, tadover.

I will see MO in September; I will ask her about it.

AlaskaAngel

Just tuning in after a long absence from the site. Am now 66, and 15 years out after dx in 2002 and doing the "old" tx that is less frequently used now (CAF x 6) + rads and a brief run of tamoxifen. No Herceptin and no recurrence. The chemo followed by the brief run of tamoxifen resulted in complete loss of gender/sensuality/sexuality, so that has been an ugly experience.

There was no counseling in advance to assist me with questions of sexuality in making the decision about tx, and none since.

Several years after tx, I attended a newbies intro session offered in Seattle to see if the onc nurse presenting the intro to tx would provide any discussion of possible sexuality issues post-tx, and oncology still wasn't discussing the topic AT ALL with newbies....I stayed afterward to raise the question one-on-one with the onc nurse who presented the session, and she told me that my "situation was rare" and that I should seek counseling with the hospital psychiatrists. I contacted them, and they said they unfortunately could not take patients who were over 2 years post-tx due to the demand for counseling by those more recently diagnosed.

So... how would an onc nurse really be aware whether more people suffer from it, since all they see are those newly diagnosed or still in treatment? I realize that sexuality loss isn't life-threatening, but it IS something patients should consider when contemplating treatments that are only randomly successful. No one can even say for certain that my tx "worked". I worked in medical care personally and I remain appalled by that bias.

A.A.

kae_md99

i am going to try to use zoladex instead of lupron per MO, but she cautioned me that the shot hurts. is this true? thanks

ElaineTherese

kae,

Zoladex is a pill that is inserted in your subcutaneous fat (for me, my gut) with a giant needle. My nurses ooh and ahh at the size of the needle every time, but the injection doesn't really bother me. It doesn't leave a bruise, and only causes bleeding when the nurse hits a vein.

You could ask for some numbing cream like Emla ahead of time if shots bother you.

Good luck!

kae_md99

thanks elaine. i will see if i won't have SEs from it as bad as lupron. tamoxifen might make my endometriosis flare up. another option is oophorectomy. i am 45 and by the time hornonal treatment is done i will be 50 so i am thinking about it too...did i read somewhere before that you will have an oophorectomy elaine?tn

ElaineTherese

Yes, I am thinking about an oophorectomy. Unfortunately, my new OB/GYN is on leave (husband recently died of cancer). So, I'm waiting until September to talk to her about it.

AliceAgnes

I will chime in on the issue of chemo side effects because I definitely had some in connection with six infusions of TCHP spaced three weeks apart. I thought I'd be able to continue working at my part-time job but ultimately had to take a leave of absence from work.

On this site some have speculated whether having a delicate stomach may be a factor in how well one handles chemo. I think it may be. I am prone to motion sickness, for example, and some days during the first week after each treatment I felt exactly as I do when I get carsick. I had pills to take, however, whenever I felt a wave of nausea coming on and they helped. Harder to control were the runs. I needed plenty of Immodium capsules for about two weeks after each infusion. My instructions were to take two capsules after the first episode, then one capsule after each subsequent episode until the runs stopped. I could take up to eight tablets a day and some days hit that mark. Most days, however, three or four capsules brought that issue under control.

I also suspect that the older you are, the harder chemo can be. I am 64, and chemo exhausted me. Of course, a pre-existing condition probably limited my ability to handle treatments, too--fibromyalgia, which was first diagnosed when I was in my early 50s. Many nights I slept 12 hours--and still needed afternoon naps.

My hardest times came after the first and sixth infusions. Both of those times, I came down with a bronchial infection that required antibiotics to cure. After the sixth infusion I also developed breathlessness and a high fever that landed me in the ER. This happened while I was still fighting off waves of nausea and the runs. Blood tests revealed low hemoglobin, potassium, and magnesium levels in my blood. I received some fluids in the hospital and ultimately was prescribed potassium tablets to take at home.

Other side effects I experienced over the course of treatment were blurry vision and loss of taste. By the end of my sixth treatment, all foods except sweet ones like ice cream tasted bitter to me. I ate simply to get well, not because I enjoyed it. I did find, however, that bland foods like chicken soup or fried egg sandwiches tasted all right. Beef in all forms, once my favorite meat, tasted terrible.

The biggest point I want to make is that I did get through the treatments. The people at the cancer center and the ER could not have been kinder to me, and they were constantly working on fixes to all my problems. My main duty was to keep them informed of the side effects I was experiencing, so that they could help me deal with them. It was 18+ weeks of challenges for me--but did produce positive results. My biggest tumor noticeably shrunk, and I will go into surgery later this month with the cancer already partially whipped. So am I glad I had chemo despite all the complications? Yes, I am.

toughcookie_21

I haven't posted on this thread lately, but today I received my chemo recommendations and have some difficult decisions to make. I'm grateful to be able to come here and learn about how others have fought Her2+ bc. The mo is strongly recommending TCH x 6 then herceptin every 3 weeks for the rest of the year. He then (very reluctantly) also gave me a choice for taxol + herceptin for 12 weeks and then herceptin every 3 weeks for the rest of the year.

They ended up finding a second 1.6 cm tumor in my right breast, very close to the other one, but the lymph node was negative and the surgeon got "excellent" margins. He was also pleased that the two tumors were separated by healthy tissue. It seems to me that having a second tumor would put me in a higher stage, but they're still calling it stage 1b.

I'm worried about working through this. I have a demanding job that requires travel and interacting with all kinds of people and I usually work way more than 40 hours a week. I am a marketing manager for a large multinational medical device company and work in new product development. I also have an 8 & 11 year old. I'm super busy and feel overwhelmed with the addition of this to my already over scheduled life. The chemo and 12 months of herceptin is a huge commitment! I'm also not used to making important decisions without having a really good idea of what the final outcome of my decision is going to be. I would never make a decision in work or for my family that had such an uncertain positive outcome.

ElaineTherese

Hmm, toughcookie, your job sounds way more stressful than mine (teaching college students). I worked through chemo, but I did talk to my boss about reducing some of my work commitments, like chairing committees and traveling for professional reasons. I also arranged a back-up plan -- two teaching assistants were assigned to my classes in case I had serious problems with chemo and I needed people to take over my classes. The alternative? I could have requested short-term disability, and my boss would have had to either cancel my classes or to find temporary instructors to teach them for me.

I would think the same would hold for you. You could offer your boss two options: 1) short-term disability or 2) that you would continue to work, but at a reduced level.

As for the TCH vs the Taxol + Herceptin, I would imagine that the latter would be easier to work through. I didn't mind working through Taxol + Herceptin, as long as I had my handy Imodium around. I was also pleased that I didn't suffer chemo brain from that regimen. I was tired, but at least I wasn't tired and spacey.

Hope you can figure out what's best for you!

kae_md99

hi toughcookie,

your job seems to be stressfull. my job as a floor nurse in a very busy telemetry unit is very demanding. and physically hard. lot of lifting and pushing,pulling,on my feet all the time. there is no way i could have worked thru chemo. a lot of our patients when i wasdiagnosed in the winter were also having respiratory /infection issues and my mO did not want me to be exposed. i live in california and we have state disability insurance here andi availed of that. it is good for one year. also have 9 y/0 twins with disabilities. goodluck!

toughcookie_21

Thanks everyone for your replies. I have some really difficult decisions to make all around and I just hate not knowing how my body is going to react to the chemo. I came through surgery without any complications and feel good 2 weeks out. I hope I handle chemo as well as surgery.

Hapb, I totally agree about the stress-cancer connection. Prior to my diagnosis, I was under a tremendous amount of stress at work, but I felt like I was finally getting it under control. We had filled 2 vacant positions on my team and then bam! I found out I had cancer.

Kae, I had no idea you have special needs twins. And nurses are some of the hardest working people I know. I work with nurses a lot through my job.

Elaine, I am going to propose to my employer similar to your approach- I can either go out on disability or we can find a way to reduce my workload and I don't think I should be traveling or visiting hospitals and doing labs.

Lita19901

tough cookie - I have a similar diagnosis but with just one tumor. My surgeon, who is the head of the breast surgical oncology unit at Johns Hopkins, said their protocol is to use Taxol plus Herceptin for Stage 1 breast cancer that is HER2 positive as long as there is absolutely no node involvement, not even micromets. I'm curious as to why your MO only reluctantly offered this regimen of treatment. Did s/he say why

toughcookie_21

Hi Lita, he said that because of my age, he would want to treat it more aggressively with TCH. he said that they typically reserve Taxol + Herecptin for older patients. I was node negative and the surgery resulted in clear margins. There were no micro mets in the lymph node.

The surgical oncologist encouraged me to get a second opinion at memorial Sloan Kettering or Penn and I think I'm going to do that if I can get in there this week or next. If there is agreement from a second opinion, I think I'll feel much better about my decision.

Sorry to all if I seem to be waffling on this, but I'm still trying to work through how to proceed!

Lita19901

Tough Cookie - glad you're getting a 2nd opinion, especially at Penn or Sloan Kettering! I'm turning out to be quite the doctor/hospital snob! We've been thinking about looking closer to home - we're about 2 hours from JH - for chemo, thinking it would be easier if there are problems, but there is just something about knowing your doctor is good enough to be at JH! But it would be so much easier..

toughcookie_21

Lita, I'm completely on board with the doctor/hospital choosiness. I got lucky with my breast surgeon- he is well known, published, trained and worked at MD Anderson prior to coming to PA. The hospital he works at is 5 miles from my house. He wasn't the surgeon they originally recommended after my diagnosis. I waited an extra few weeks after my dx to see him. There aren't any big names medical oncologists like him that work at this health network, so I just saw the MO they recommended. I think that is part of my hesitation.

I think having a second opinion from Penn or msk will make me feel much more comfortable with this decision. Hopefully they'll recommend the same treatment and my decision will be easy! I am kidding. This is not an easy decision in any way.

I'm about an hour north of Philly and 1.5 hours outside manhattan, but I don't think I want to travel for chemo. That will just add to my stress about balancing family, work and cancer!!

deni1661

Toughcookie - it seems that many of us have a stress connection. My unreasonable workload and personal commitments caused me a lot of stress before dx. Add terrible eating habits and lack of sleep....a perfect environment for cancer to grow. I strongly believe stress is the primary cause of cancer.

I agree with Hapb and others - your health must come first. I am able to work from home or flexible hours depending on how I feel and that has helped reduce my stress level tremendously. Can you do your job remotely? I have also prioritized my personal commitments. I know that sounds weird and I initially felt bad saying no to social invitations, but I decided quality over quantity is much more important to me after going through cancer. I have finally decided to put myself first and my stress level is much better.

I'm a big believer in getting a second opinion. I wasn't comfortable with my hometown MO and BS so I went for another opinion. I am so grateful for that second opinion; I love my MO and surgeons!

I wish you the best of luck with your decision. Take care

TYE89

Toughcookie - our diagnosis is similar & maybe some of my info will help you. I'm so sorry you are stressed worrying about juggling work, family & treatment. I pray that you are able to devise a plan that relieves your stress!

I just finished two days of Dr appointments for final treatment plan. I am at MDA. You can see in my bio that I had 1.6cm IDCwith 1 mm micromet. I thought I was going to have to decide between ALND or rads. I was wrong. Here is what my doctors decided:

MO said she does not consider me node positive from chemo standpoint. She said in June, guidelines for Perjeta were reworded & now include "after surgery, adjuvant use". I will be getting both Herceptin & Perjeta. Because BC was over 1cm & my age, I will have TCHP x 6, every 3 wks, Herceptin to finish out the yr then an AI for 5-10yrs. She said if BC would have been <1cm, I would have had Taxol x 12 plus Herceptin. MAYBE THIS INFO WILL HELP SOMEONE ELSE.

RO said I will not benefit from rads with my chemo regimen & is confident chemo will clean me out. She is against ALND for me.

SO agrees with MO & RO. She said pathology has changed so much that 10 yrs ago they were not finding & diagnosing micromets, so they don't really know what women had them.

I can still have ALND after chemo if I am not comfortable leaving them. I'm at peace knowing if anything changes, the door has not closed on ALND nor rads and either can still be done after chemo.

TYE89

HapB - ALND is Axillary Lymph Node Dissection. Are you doing chemo (Taxol with Herceptin?

Yes, the different treatment options are very interesting. I also was told a mastectomy would not make a difference. It was my personal choice to have a dbl mastectomy. I saw my MO on June 6 & she said Taxol+Herceptin. Yesterday, she said since we had seen her, she had been to the their annual conference & that is where the changes were made for Perjeta. She said this rewording will enable more patients to get Perjeta bc most insurance will now cover it.

This may be the study my MO was referencing:

http://www.ascopost.com/News/49404

Jumpship

Cancercare.com has a legal department that can help with workplace accommodations if your boss is making it tough

TYE89

HapB - of course. My decision was influenced by several things. We lost a neighbor to aggressive breast cancer a few years ago & I always said if I got it, they were gone; my age, I did not want to have that worry recurrence or getting it in the other breast (I know there is still a chance); and although I am not, our family is primarily in the medical profession & in addition to their opinion, everyone we know that has had BC has gone the DMX due to desire to take away as much risk as possible.

All this being said, many have lumpectomy & stats show there is not a significant increase in benefit of DMXvs the huge surgery that it is. I could not have recovered from this surgery alone. I am 3 wks out & I am finally feeling pretty good. I think you would have needed chemo regardless of your surgery due to your triple positive status.If you live alone & have other medical issues, I'm certain they looked at the big picture & made the right decision for you.

coachvicky

I think our mental health is grossly overlooked.

Here is an article that I found enlightening: http://www.breastcancer.org/research-news/many-wom...

I think we are asked to make life changing decisions while in shock. These have to be made, of course. But there is so much thrown at us at once and all this new language!

Thank goodness for these boards to help.

Vicky

wabals

Lita Dr Euhus

Lita19901

wabals - ?

T-Sue

ToughCookie - I'm sorry about your diagnosis, but you have found the right place. Way to support her Team Triple Positive!

My diagnosis is similar to yours - two tumors, triple +, no lymphnode involvement. Both of my tumors were under 1cm, so my MO recommended weekly low-dose Taxol plus Herceptin. I am 47yo with a 9yo; I work part time as a teacher trainer through contracts - either with in-person teacher trainings (involving travel) or remote work (on presentations). I also homeschool our son. Like you, I was really worried about how I would react to the chemo. I made the decision, with my husband's support, to drop all of my existing work contracts so that I could focus on resting and healing instead of travelling and meeting deadlines. In retrospect, I definitely could have handled keeping my remote work projects, but I don't regret the decision. I also recognize how fortunate I am to have had the option not to work through chemo.

I've been keeping track of my side effects through this process. I'll type up what I have so far and post it here for you and others. Best of luck to you!

AlaskaAngel

HapB

This is a response to your post back to me, which is 1 page back now (for general readers, as i am not sure where my post will appear in relation to yours).

It is less likely to have as much effect on younger people who are treated because their bodies are more hormonally productive.

By "loss of gender" I don't just mean what medical providers who haven't experienced it personally tend to believe is "just a consequence that some people experience after treatment", or that can be "improved by using sexual aids" or "different sexual techniques" or "taking time and effort to create a romantic atmosphere"....

I mean that the treatment changed me from being a very sexually active wife (female) to being unable to identify psychologically or hormonallly as either female or male, in complete confusion as to why I was unable to resume enjoying sexual relations. I couldn't even kiss with any feeling but distaste for kissing.

My best guess is that it had to do with the extreme drop of feminine and masculine hormonal levels. But I tried taking supplemental hormones and it didn't change a thing.

My spouse and I are still as close as we always have been emotionally, but it is a huge sacrifice to make without knowing ahead of time, and without any counseling, and with medical providers in denial about it.

A.A.

AlaskaAngel

Thanks for understanding, HapB. From what I have seen, many suffer some loss of sexuality from treatment, some due to menopause, and some due to early menopause. I do think there are others like me, but who find it difficult to be open about it. But it is absolutely crappy that there is no advance accurate information provided to patients about it, especially given that no one knows whether the treatment will be successful or not, and THAT can mean that people end up not benefiting from treatment as well as suffering the loss of sexuality and/or gender.

One other thing I should mention was that I completed chemo without any loss of gender (even after a full month passed), but the loss occurred after 2 weeks of tamoxifen that I started taking 1 month after chemo. I kept taking it at full dose for a year after that, and then cut back to half-dose, but nothing changed.

Cherry-sw

Hello,

I was diagnosed in June after I found a lump above my left breast. My GP did not think it might be anything serious but a lump is a lump and she contacted one of the largest breast centers in the area where I live. I am not in US, I live in Europe, Scandinavia. During biopcy they told at once that it looked very suspicious and that what they see has to be removed. In a week I met a doctor who confirmed that fine needle biopcy shown the proof of maligh cells and was scheduled for surgery in July. Yesterday we met the surgeon, the tumor is IDC, 1,5 cm, an additional DCIS component around it, ER,PR,HER2 positive, Grade 3, all 3 nodes were clean. I have been in shock ever since the diagnosis in June and am not taking it well. I have a meeting with oncologist in two weeks so I do not know anything about the treatment yet except that it is going to be a chemo, Herpecin, radiation and hormonal therapy for 10 years. I red about Herpecin last night and got scared of all possible side effects. I am married with two children, my eldest is 21 but the youngest is only 11 and I am so sad all the time. I had problems with my left breast since last fall, it was huring for a couple of month and in January my GP arranged for a mammogram and ultrasound, everything was clean but I suspect they were not checking that high up in the breast because it sits right below my axilla. I appreciate any support or advice, will be asking a lot of questions about the treatment as soon as I will know more. How did you perceive Herpecin, how bad is it? Any side effects one should focus on in particular? Thank you in advance.

Sincerely,

Cherry