TRIPLE POSITIVE GROUP

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.

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!

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.

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.

Lita Dr Euhus

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!

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, I'm sorry you had to join us. Nothing about BC is what any of us wanted to deal with. Your stats are similar to mine, so maybe my experiences can be of some help. Please don't worry so much about the herceptin. Yes, one of the side effects is decreased heart function, but it isn't guaranteed you will have it, and most woman don't. Also, they will monitor your heart and stop if there is a problem. Honestly, I just had my 11th infusion of herceptin and have had no problems. Some women do, but many, many of us don't. That doesn't mean you shouldn't be aware of them, but most women are fine and you probably will be too. I have had 3 echos (one before, and 2 since starting herceptin) and have had no decrease in my heart function. Also, other than maybe a runny nose now and then and my bowels being loose for a day or two, I do not have any side effects I contribute to the herceptin. I'll take the herceptin over the SE's I had from chemo any day.

My MO was one of the doctors that did the study on herceptin and they way she put it to me was before we had herceptin most triple positive women wouldn't make it long term. Now that we have it, they do. Herceptin has been a game changer for those of us that are HER2+. It's worth it. Now that I'm done chemo, I just go in every 3 weeks for my herceptin. It takes about an hour; I just go, have a cup of tea and read a book. It's like having down time from my other duties. After I'm done, I just get back to my normal life. It doesn't effect my daily life at all. Please don't freak out about it; I found chemo much more "scary" than the herceptin, but I've managed both. I'm now NED, I have 7 more heceptins and I'm taking tamoxifen. I'm getting back into my regular life and I'm very happy herceptin is there for me. I plan on being here to see my children have children. Herceptin is going to help me do that.

Please talk to your doctors about the spot above your left breast. Maybe they wouldn't normally go that high up (I don't know exactly where you are talking) but if you point it out to them, they should check it. I have found my doctors to be wonderful about checking out anything that bothered me. You are in good hands.

Hi,

Thank you for your replies, I really appreciate it, means a lot.

Leslie2016, thank you for sharing your experiences with Herceptin, I know there is no any way but just go through with it. It is just for over a month I have been waking up realizing I have bc a d becoming so sad but now I when I am waking up I am thinking of HER2+ and getting even more sad. When I read on the web ER/PR/HER+ has the worst survival prognosis and it is hard to be optimistic. I feel trapped. I do not have any spot, my tumor is located very high up, almost on the same level with my armpit. They have not found anything in the breast itself but I have very dense breasts too.

KB870, I saw that Kattis is from Stockholm and so am I, I will go through her posts and I will post dome questions here when I know more about my treatment plan. I have to deal with this reality somehow, will need any support I can get. I find this community very helpful, no one else can fully understand what we are dealing with.

Sincerely,

Cherr

Thank you, ladies

Your support means a lot, I feel so indescribably sad all the time and just reading everything I can find on this type bc along with the stories on this forum. This feels so unreal, and I will do everything my on oncologist will tell me to do but all this fear and uncertainty for the rest of my life, this ovewhelming. How does one find her new normal? I believe now that the things I used to like like wine, travel, sunbathing, eating meat, a god run once in a while, those things I either should stop with or will have to stop with, because they are either not good for me or I will not be able to do those physically, like running. And then my family, when I think ot them my heart just breaks, how did this happened to us. I understand that anything could happen to anybody any time, but this dx makes you realize that nothing is forever. I will ask a lot of questions later on, this community will be my long term lifeline, this is something I need right now, to connect with people who have been through the same thing.

Sincerely,

Cherr