TRIPLE POSITIVE GROUP

Hey everyone. It's been a while since I've posted. I figured that the kiddos are back to school this morning so I'm able to sit down and write out the horrific experience of my first chemo treatment. The infusion itself went well. Although days later I found that my mouth was so messed up I called my doctor. My oncologist took one look in my mouth and found that the chemo meds, carboplatin, and Taxotere had scalded my mouth, throat, and tongue. I could barley talk forget eating and drinking. It was too painful. I ended up having to go to the treatment center daily to get fluids and steroids via my port along with using 3 different mouth washes to try to help and resolve the issue. My mouth isn't 100% now but it's a lot better. On that Friday she decided to give me the Nuelasta shot to boost my WBC. Well now that was a huge mistake. By Saturday I was admitted into the hospital with a severe allergic reaction. The pain in my entire lower extremities from my lower back down was excursitating. I was there for 2 nights till they were able to get the pain under control. Wow. I never thought my first round of chemo would be so horrible. I knew it would kick me down but didn't expect all of that and more. The body aches, my hair was falling out just a few days after which I knew would happen was just wasn't ready for but then again who is. So I had a follow up with my oncologist this past Friday. She's made the choice to take me off Taxotere, and carbo. She says I'm allergic to them both along with being allergic to the Nuelasta shot. Now she's putting me on Taxol for weekly chemo infusions. I'll still receive my other scheduled chemo treatments every 21 days also. I'm highly scared as this Friday is my next treatment. I've been trying to research Taxol vs Taxotere and they seem to be realativly the same. Any advice ladies?? I'm also running into the issue of having a very rare auto immune disease which I think is half the problem in trying to treat my breast cancer. When I google bechets diease and breast cancer it's so very rare. My oncologist called the Dana Farbe Institute in Boston, Mass for some advice on my case. I feel like a statistic, a rare one and that scares the hell out of me too. I just want this go a little more smoothly. I can only hope and pray that after Friday's infusion I won't be so sick to be admitted into the hospital again. Horrified and scared....... 😓

Beautifully...taxotere took me down for the count too. The pain was awful. Not as bad as you, but I ended up sitting at home taking major pain pills for a week after it each time. I don't ever want to take it again. The good news is the women that went through chemo with me (on this board) that had Taxol didn't seem to have the pain I did. I don't know what the difference is, but it did seem to be kinder to them than mine was to me. I hope it's the same for you. Chemo really sucks, but you can't end up hospitalized each time! Good luck with the new drugs.

beautifully - I would inquire about switching to Abraxane - it is a taxane like Taxotere and Taxol, but it is without the solvents that usually cause the issues with both drugs. Taxol is a milder taxane than Taxotere, and it is usually dosed weekly so you are receiving a smaller amount of the drug, more frequently - most people do better with this approach if they have had issues with Taxotere - but you will still have cumulative side effects by the time you reach the end of the course. Also, there has been some discussion about the need for Carboplatin for triple positives - some MO are eliminating it because of the harshness. I used Caphosol for mouth sores - I am prone to them anyway, and it worked very well for me I had dozens after the first round of chemo, and they cleared in 48 hours. I am wondering if you can forgo WBC boosting meds (Neulasta and Neupogen) and take prophylactic antibiotics if your WBC drops.

coach about 4 months before I was done...I hit the wall. I was tired of everything. Tired of being poked tired.of being sick tired of side effects. I treated myself to something special as a "prize" for how far I'd come, and had a girls weekend with my best friend to get back on track. Good luck. It's a long haul.

kaemd99 - I will be on HP for a full year. Surgery is coming up soon, that will be the real test to see if the protocol is working. I'm a little nervous because triple positive is so aggressive but my MO has been getting good results with his patients who take HP only.

Tresjoli2

'Burbs, sorry you had bad news. I like your attitude, though. Powering you way through this crap with good thinking.

Things that come to my mind:

1.) single or double.

A local bc friend chose single to start after being encouraged by our BS, who cited a 14% risk of complications with a double vs. 4% risk per single. I'm guessing the difference is because it helps to have one good arm during recovery.

2.) how long after completion of TCHP should I expect to schedule surgery.

2 to 6 weeks, depending on how worried your doctors are about you. I researched this extensively after a booking error left me with a difficult choice to make. It appears there is not a clear link between survival and time between chemo and surgery, but four weeks is most common. (Waiting longer than 8 weeks appears to show worse survival until you factor out other health problems and age, which are higher with longer waits.) I have a couple of local bc friends who were fitted in for surgery just 2-3 weeks after chemo because they have advanced cases.

3.) radiation

about a month, but if your nodes are clear in the pathology report it might not be offered to you

4.) Reconstruction

Dunno, but reconstruction is easier if you don't have rads. The tissues heal better and more quickly. Rads make a permanent change. Some say fat grafting down the road is helpful for introducing new stem cells. If no rads, immediate reconstruction might be an option. (I was going to go with immediate nipple-sparing mX if my genetic testing came back positive. Surgeon gave the thumbs up to that idea.)

5.) What tests should I expect or insist upon before a decision on surgery.

The genetic testing is a great idea. I did that and had peace of mind with my choice. They had to rush the results though and i only got them a couple of days before surgery. Here in Ontario, a rush order means 9-10 weeks. So another good reason to do chemo first and be on top of things!

I hope you find all the info you need to feel good about your choices. It makes all the difference in the world. With good information and an attitude like yours, women facing cancer can be the heroes of their own journey. Good luck!

Thanks for the info on the "taxol thread." Although I have wandered around, I hadn't found it. I have had minimal side effects from the weekly Taxol/herceptin infusions. Second day the worse. I don't know if the fatigue is from the lack of sleep from the steroids (my fitbit is even having trouble tracking my ups and downs the night of chemo) or other things. I do feel tired during infusion but haven't been able to sleep - just keep my pocket kindle handy. I too have the bloody, mucusy nose but again, manageable. Biggest problem for me is the constipation but I seem to be getting better at managing that with each infusion too. Basically more "prep" leading into infusion day.

Week 5 coming up - WE CAN DO THIS

Thank you Kattis894 for your kind words.

Coach Vicky

Just received results of my annual mammo - 3 years NED! Bone density improved with Tamoxifen from osteoporosis to osteopenia. I know how very fortunate I am, especially since I took a 3 month break from Tamo and took Cymbalta for a while. Still, I need to find something to replace the Cymbalta (which totally eliminated the pain but I stopped taking about a month ago per advice from you ladies and also my new PCP) and also the Gabapentin (which doesn't help the CIPN pain enough to pay for itself). Seeing my new onco tomorrow and won't let her out of my sight till she comes up with a med that works as well as Cymbalta but won't interfere with Tamo or dope me up. Same with hotflashes. Summer in Texas is tough when you have hotflashes to go along with the heat. I intend to revisit Icool - maybe should have tried it for a longer period of time the first time I tried it.

I realized that what I thought was nausea was really some acid reflex (and the anti-nausea drugs were adding to my constipation). I went to a daily nexium and dissolvable acid reliever (150 cool) and that seems to be helping with both problems.

Week 5 of taxol/herceptin coming up. Hair just about gone.

I just found you ladies and am glad I did.

Blownaway, congrats on the mammo results - great news!

Hi all having issues with Hercepton, one week after 7th round went into A Fibulation and high blood pressure, went to hospital and blood pressure came down, one week later blood pressure back up to 176/110.  Feeling dizzy and tired, eye site funny.  Going back to the doctor tomorrow to check blood pressure to see if it has come down.  See my Oncologist next Wednesday so will be asking heaps of questions or whether it is worth being on Hercepton

Blownaway, Hurrah! Best news I have had today. Fantastic!

Deni1661, I am reading the January and February surgery topics and learning lots. Your surgeons comment that a repeat on the other side would be a new cancer and not a recurrence has me thinking very hard. I had better get healthier before surgery and spend more time on the treadmill. The one thing about neoadjuvant TCHP is the fatigue just comes in waves and takes me out of commission due to the steroid crash. Now the skin rash sent me back on steroids. I wish I had researched surgery earlier in this process when I felt better. Tissue expanders just sound awful. I just have no interest in multiple surgeries. And implants have a shelf life. Argh! Like you, I am prepared for both to go.

Again, I really appreciate the posts here. I'd need a day with my doctors to get all this information. I feel like I am being fed information piece meal on a need to know basis. That does not work for me. I need to know everything to make my own informed decisions.

Another point, if Herceptin is cardiotoxic and I am stuck with it for a whole year, this makes recovery from surgery more risky, I would imagine.

i am curious, is there a diagnostic that your MO ordered ( MRI, ultrasound,etc)while on neoadjuvant chemo to check if chemo is working or shrinking the tumor?also, can you tell me what exercises you are doing while on chemo aside from walking?thanks