TRIPLE POSITIVE GROUP

Hi Faith83111! I also had TCHP and had very similar SEs as Furiosa (great name, but the way! I have a Furiosa hairdo these days). A few things I would add:

--SEs are SO different for everyone, so what I am going to write pertains to me but might not apply to you; your experience could be very different than mine (and better I hope, although in retrospect, mine was tough but tolerable).

--Be very careful about germs. I know that sounds obvious, but I was feeling pretty decent for the first week after my first round and think I was a bit careless about germs. I picked up a GI bug and ended up in the hospital for three nights. I think the steroids help us feel pretty good for a while, but our WBC counts are still bottomed out for longer than we think, so just be careful about hugging, shaking hands, etc. with a lot of people for a while. We asked everyone who came into our home to take shoes off and wash/sanitize their hands.

--I developed some tinnitus and minor hearing loss in a very specific frequency after my second round. The platinum containing drugs (i.e. carboplatin) are linked with hearing issues--it is a known issue. I didn't feel that my MO was taking my complaints about the tinnitus seriously, so I arranged an exam by an audiologist who diagnosed my issues. Of course, there is no absolute proof that my hearing issues is related to the carboplatin, but I personally believe they are.

My MO, who had just returned from a breast cancer conference in San Antonio where new research was presented about the effectiveness (or rather lack of effectiveness) of the carboplatin on HER2+ disease decided to stop my carboplatin after round 3. She made this decision based on my hearing issues and my extreme GI issues (i.e. diarrhea) with the carbo. I think there is still debate about the effectiveness of carboplatin on HER2+ disease, but it might be something worth mentioning to your MO if it turns out that you have difficulty tolerating it.

--I had NO nausea at all. I took Zofran sparingly at the beginning of each round as my MO suggested, but not beyond that. I think the Ativan really helped both with sleep and queasiness/nausea.

--I really listened to my body and rested/napped when I needed to--I think that helped my body do what it needed to do to recover from the chemo.

Happy to answer any questions on the board or privately if you want. I wish you the best of luck!

Hi Faith-

Just TCH - no P for me. BUT just want to agree- side effects are variable depending on the person. For me they REALLY sucked ( of course) but I did work the entire time. I am a physician, own my own practice, so taking time off would've been expensive to say the least. It was not EASY to work, but it was do- able, and something about being there kind of helped me get through things. The other thing I did, which was also very very difficult, is that I exercised at least an hour a day almost every day. I never felt like it, but it helped my energy level a lot. other things I would add:

- my white count was almost zero most of the time but miraculously I was able to stay out of the hospital, and I didn't really try to avoid sick patients. My doctor told me I was more likely to catch something else from my own bacteria than someone elses. He did however, give me antibiotics to take if I got a fever, which happened three times.

- I had a lot of GI problems- mainly kind of constipation, which started after the second round. I took miralax everyday, and tried to avoid some of the constipating anti-emetics. I also mostly tried to have a liquid diet only the day before chemo continuing until the day after chemo. that helped me with the stomach pain from the chemo.

- after the third round I gave up on all the medications the doctors gave me because of side effects- except the steroids (which I tried to do without unsuccessfully) and occasional ativan (which helped me more with nausea than most other drugs). After the third round I gave up and gave in to trying medical marijuana which I used the first two days after chemo since it was the weekend, and that helped more than the other meds. (when I finished the tough regimen, I passed my extra along to a friend with ovarian cancer who is on a similar regimen and she felt the same way)

-I wanted to quit the whole time. Literally every treatment my boyfriend and kids had to talk me into continuing. Even though I was functioning pretty highly, I hate the way it made me feel-- but as everyone pointed out to me- if you quit- I'd recur and then I'd have to do chemo again with a worse prognosis. My last course was canceled because I developed pretty bad numbness in my fingers ( and I operate so that's not good) and my platelets simply would not rebound AND my daughter was getting married in three weeks.

maybe this is too much information (sorry if it is). But you WILL get through it, and when it's over, you'll know that you did something phenomenal.

Hi Faith, TCHP for me too. Just had my second treatment. My SEs have been fatigue, body aches, loss of appetite, and the back n forth big C/D. It's been manageable and the tumor started shrinking immediately. The first week post treatment is a lil tough cause I'm so wiped out and tired but things start getting back to normal by day 7  

I also receive the Neulasta shot to help with keeping white blood cell counts high. 

No. I had surgery first. Back then (2010) if your tumor was over 5cm they would remove the first level of nodes, in my case 10. I had 4 sentinel on the other side because we saw 3 suspicious spots, one that my BS was concerned about. We didn't biopsy because of time. It was 8+ weeks after my mammo that I finally got into surgery (place I did the mammo/us kept sending the wrong disk). Ended up that spot was LCIS.

So I never had anything in my nodes. And now they find it's better to do radiation if node involvement unless you have gross disease in them. Just as effective but lowers risk of LE. I didn't have rads but I do have LE in my left 10 node arm. Minor but I do wear a sleeve daily and it helps.

Faith83111 - I am also on the THCP regimen. There's no need for me to mention my SEs because I will just be repeating what others have discussed. It is good that you have your first treatment out of the way. Personally, I found that one the hardest: longest time in the infusion room due to loading doses and monitoring possible reactions, and not knowing what to expect from the SEs.

I went in for treatment 5 of 6 on Monday. Right now I'm out of the fatigue stage and close to the stage where taste changes cause a loss of appetite. Then around Day 10, the halfway point between treatments, I start to feel like myself. Round 4 hit me harder than usual because of the neuropathy in my hands. That is the first time I had to deal with it. Before it was only in my feet and it seemed mild. My nurse mentioned taking glutamine and vitamin B6 for it. I still have it but it is milder than it had been. I am also anemic, which probably won't go away until I finish chemo. I started chemo 3 months ago, so I am going in for an echo next week.

One last small thing to mention. You will probably stop getting your period, but it might not happen right away. Like you, I went through the egg retrieval process a week before starting chemo. I didn't hit "chemopause" until after treatment 4. If you get your period during treatment, it is advised to use pads and not tampons due to risk of infection.

Like you, I am using intermittent FMLA. I have been taking off the week of my treatment, then I work the next 2 weeks.

I'm approaching my 2 year cancerversary and seeing my BS next month. I had a bmx and DIEP recon, so no mammos for me, but I think I remember her saying something about maybe an MRI at two years. Is this protocol, an MRI at 2 years post surgery?

I have not had any breast MRI done and I am at 5 years. I did have a pre-chemo PET, a post-chemo PET, and one at one year post-chemo. Some PS also look at MRI to check integrity of implants, but that is not universal

Has anyone had something "show up" on PETscan, but not "light up?" My MO asked me about a small spot on my ribs at initial PET... she used those words, it showed up, but didn't light up. She said she wasn't worried about it, that it looked like an old injury to the doc reviewing it, and to her... Asked my family and mom said, yep, I was in anaccident at 14 or 15 and bounced around the car, hit my ribs ont he gear shift and had an injury and bruising. They Xray'd the spot and said it would be put in my file. At my last visit, My MO said she wants to redo the PETscan at the end of treatment, she doesn't normally, "but you did have those 5 positive node."

I asked a radiologist, and my RO, and they both say anything like old injuries, arthritis, etc., can show up on PET and it's just my MO being cautious...

Anyone else encounter this type of thing?

Thanks ElaineTherese, I hate the worry and anxiety...MY BS said, early on, something always shows up on PET, always, and its usually an old injury, surgery, or arthritis.

I was thinking, YAY! done cchemo, done BMX, done rads, onto Herceptin only until June and the hormonal drug, not much else to worry about, then she springs this...ugh!

Danielle, you are sweet to be on here for your friend. There is a great thread called Brain Mets Sisters that you could post on; they all seem really close and have become experts on the disease, unfortunately.

Does anyone here know what percentage of triple positives have recurrences? I would love to know what my odds are. Has anyone found such a study?

I was node positive, and I think that means I had a 25 percent risk of local recurrence without radiation (at least my RO told me that). But I think surgery/radiation cut that in half, and Tamoxifen is cutting that in half again. I guess I shouldn't worry about numbers and odds and percentages. I just finished Herceptin last month and got my port out two weeks ago, but now I'm struggling with fears of recurrence. What do you guys do to stop worrying?

Danielle -- here's a link to the Brain Mets Sisters thread that Metta mentioned.

We hope this helps! Please keep us posted on how your friend is doing!

--The Mods

edwsmom,

I didn't have PCR(complete response)....there was a 4 mm spot left in the tissue that was removed during my mastectomy. It scared the crap out of me!!! I had severe anxiety for a few weeks. With time the fear will subside. I don't know what advice I can give you because when I was going through it I knew that I shouldn't be worrying, to not worry until I have a reason to worry,that it doesn't help to worry, etc, etc....but when your going through it it's hard to stop your anxiety and your mind from going crazy. I am NED and consider myself free of cancer since July 2014. All I can say is to not worry until there is something to worry about, which I learned from someone on this site, what will happen will happen and we can't change it, and this too shall pass.

God Bless,

Kathy

Question about being on Herceptin alone.....

For those of you who were on Taxol with Herceptin and later transitioned to only Herceptin, did it impact your GI tract issues? I had the big C with Taxol and was wondering if I should keep taking meds to combat that, or does Herceptin tend to run more to diarrhea? I finished chemo on Friday and begin my first Herceptin only infusion this Thursday. My MO says that I will be getting triple the dose of H than what I did when it was combined with my Taxol. Hoping for minimal side effects from it. Thanks for any input.

Some diarrhea, more heartburn with Taxol I think. I'd have both Immodium and an antacid handy during the Taxol / Herceptin / Perjeta. Zantac does it for me. Good luck!

I didn't drink during chemo but I drink now that I'm just on herceptin usually in moderation but there has been a few times such as New Years weddings and vacations that I drank a bit too much