Indecision about chemo. Taxotere + Carboplatin

fossilizedflower

Quick summary: 29 years old, Diagnosed in July with stage 1 high grade IDC in left breast, underwent unilateral left mastectomy August 28, 1.7cm tumor, clear margins and node negative, er/pr positive, Her2 negative, BRCA1 positive, Oncotype DX score 36

I have been feeling great and positive since my mastectomy but this week has been a flood of emotion. I had my first post-surgery meeting with my Oncologist last Monday. The tentative plan was 5-10 years of tamoxifen but with my high Oncotype result (score was 36) chemo is now being strongly recommended. She is recommending 4 rounds of Taxotere and Carboplatin, followed by Tamoxifen. I will also be taking Lupron injections.

I am wondering if anyone has had experience with this medication combination?

In my own research I don't see that this is a very common treatment. My Onc said the Carboplatin is because of my BRCA mutation. I'm really concerned about side effects, especially reading that Taxotere can cause permanent hair loss. I am hoping to be able to go through with cold cap therapy but still gathering information about cost.

I asked about doing Taxol instead of Taxotere, as they have the same efficacy. The doctor is not opposed to Taxol but her concern with it is neuropathy and bone pain as a side effect, which apparently is milder with Taxotere. Also, with Taxol I would have treatment once a week for 12 weeks instead of every 3, but the dose is much milder than Taxotere.

I am feeling confused about what to do. I'm considering a second opinion but I know time is of the essence here. I'm also concerned that I've had headaches (never had headaches like this before) and constant dull lower right abdominal pain. Mentioned this to doctors yet no scans have been ordered.

The decision to have a mastectomy with no reconstruction was much easier emotionally for me than facing chemo. I trust in my Oncologist but I can't shake the feeling that this might not be right for me, at least as a first line of treatment. I know that no one can make this decision for me, but I thought hearing others' experience will at least help inform my decision.

Any experience with Taxotere+Carboplatin or words of advice regarding chemo are appreciated.

Thanks for reading

CleomeRuth

Good morning fossilized flower,

I had taxotere and Cytoxan and my hair came back fine. (I tried cold cap, but stopped after the first treatment because I was losing some hair anyway, and I found the cold cap process really uncomfortable--but I know plenty of others who were happy with it,

DiagnosisDisruption

I did Taxotere and Carboplatin (as well as Herceptin and Perjeta because I was triple positive). It's commonly refereed to as TCHP. I was Stage 2, no nodes (because I was Her2+ they don't do Oncotype because you are already going to get chemo) and BRCA negative. I had chemo on Tuesdays and was back to work on Monday. I probably could have gone in earlier, but wanted to be kind to my body.

Taxotere can cause permanent hair loss - look into cold capping. I have no neuropathy and only got a little on the last chemo. No bone pain, but muscle aches like I'd worked out too hard. Again, on the last chemo.

Carboplatin, for me, had to be taken off Rounds 3, 4 and 6. I was one of the less than one percent who developed tinnitus and hearing loss. Both are permanent. I was very vocal about all my side effects so this was caught early.

Acupuncture helped me with nausea, fatigue, neuropathy, mouth changes, taste changes. Not 100%, it still was sucky, but it could have been worse.

Moderators

welcome, fossilizedflower to our community. For no other reason then peace of mind, it may be a good idea to push for a second opinion, if you can get in somewhere in a timely fashion. Great advice above. Here is a page about Cold caps and scalp cooling systems that could be helpful.

Sorry for what you are going through, and please let us know how we can help.

Hopeful82014

fossilized flower -

I'm sorry you're dealing with all this.

For more info on carboplatin vis-a-vis BRCA mutations, you might want to check out the FORCE website (https://www.facingourrisk.org/index.php)

From the sound of it you should seriously consider seeking a 2nd opinion on your treatment plan, as you mentioned. Many times a call from a provider will get you in for said appointment much faster than just picking up the phone and calling directly; perhaps your surgeon could both provide a referral and help expedite the appointment.

santabarbarian

I had the same chemo. It worked very well on my aggressive TNBC. Not the worst to deal with. I did ice my scalp, hands and feet and though I missed doing that on chemo #1, and most of my hair did fall out, it was already growing back by chemo #5.

I had them split the dose into texotere early am and carbo late pm. It allowed me to ice more briefly as the carbo does not require it. I let them tape me off between the two so no extra needle stick.

Cowgirl13

i had Taxotere and Carboplatin (in addition to Herceptin) and haven't had any lingering problems. It sounds like you could really benefit from a second opinion. Hope you are able to do this. Thinking good thoughts for you.

fossilizedflower

Thanks everyone for your responses! I am leaning toward sticking with the recommended treatment plus cold cap. I do have a call in for a second opinion at a breast care center in my area. Hopefully that process will go quickly and give some clarity and peace of mind before I begin.

OnTarget

I did Taxotere and Cytoxin and I cooled head, hands, and feet.

I probably spent $2k on the head cooling and I haven't tried to get it reimbursed just yet. I kept most of my hair and I look fine. Don't forget the cost of dry ice each time if you do Penguin. It was about $80ish.

I had no major SEs, just minor stuff. A friend on AC+Taxol has had hand neuropathy issues, so I'm glad for Taxotere.

OCDAmy

I did taxotere and my hair grew back just fine. It’s very rare for your hair not to grow back. If you can’t manage cold capping, try not to worry.

Runrcrb

since you were uncomfortable with the plan I strongly recommend continuing with the second opinion. For me, confidence in my treatment plan was a critical component for getting through it.