what kind of chemo?

sandik

Thanks guys. I have a call in to the surgeon. Haven't heard back yet, but I'm going to do it. If I even have 1 doctor doubting that they got clean enough, then I'm going back! If this ever comes back (knock on wood) then I don't want to think, I should have gone back! It sets me back a month, which sucks. But, if 1 month = 40 more years, I'll take it! 

borntosurvive

My surgeon told me pre-surgery that if he didn't get clean margins he would go back in after my treatment was done.  I did have clean margins so I don't need to go back in but maybe see if you can do treatment and then go back or how they'll do it. 

I did not have a port for my chemo.  They just start and IV each time. I to HATE needles and just don't watch.  I just know that with each IV I was closer to the end.  A week today I'll have my LAST dose of Taxol and be done.  

If the neulasta needle causes you any bone pain you can take a Claritan or Reactin an hour pre shot and for the 3 days after and you'll be okay.  The pain is a bit of an allergic reaction (not serious) so the allergy meds help with that.  Eirther are safe to take with Dose Dense ACT.  

I have had bone pain with the Taxol that has been worse with each dose.  I rely on Tyelnol muscle and joint pain (over the counter) but have taken Tylenol 3's with the last dose.  Heat, hot baths and massage help.  The pain has only been a few days and other then that I've been fine.  I did not fair well at all with the AC part so I'll leave that one alone as everyone's different.  

Keep us posted on what the surgeon says.  Sending you lots of white light and positive energy.

sandik

Mine said before surgery that he would go back in. When he called me to give me the path report after surgery he seemed confident the RO would be OK with the margins. Now that the RO has given me that little bit of doubt, he's going back in! Haha



For those who have done re-excisions, how long after did they make you wait for your chemo to start?

riley702

I would have received TAC, but I signed up for a neoadjuvant clinical trial that would give me two extra meds usually given to those with metastatic disease (Avastin and Xeloda). So the first 4 cycles were Avastin the first two weeks, Taxotere the first week only, and Xeloda daily for the first 2 weeks. The third week in each cycle, I didn't get anything. The next 4 cycles were dose-dense, or 2 week cycles of Avastin on weeks 1 and 2, with Cytoxan and Adriamycin only the first week. I only got Neulasta shots during the last 4 cycles, the day after chemo. I was told it's much less painful if you get the shot in a fatty area like your stomach or butt. I chose stomach. I think the bone pain is because the Neulasta stimulates your bone marrow to make more white blood cells. The first shot, I felt like I'd been hit by a Mack truck, just achy everywhere. Someone here told me to take a Claritin right before and a day or so after the Neulasta and it really did help me, although it doesn't work for everyone. I had a port and loved the convenience of it during weekly lab draws as well as for the chemo.

sandik

Well, I got my rx today. AC dose dense x4 then T weekly x12. I go Monday for the re-excision and port. I'll start chemo in May.

riley702

It's good to have a plan, right?

snickers123

I had 4 A/C treatments every three weeks, then went onto 12 weeks 1 X per week of Taxol. I just had my 6th treatment today. Yes, yes do a port. It is less painful, easier for you and the nurses. Port can be removed in your surgeons office after all your treatments are done.

A/C aka "red devil" I handled pretty good, lost weight because of the metal taste in my mouth. Hated the Neulasta shot that my husband gave me in my stomach day after the A/C treatment. It actually was way worse than the chemo. Made me feel like a bruised banana for about 3 days after shot. I am NOT complaining as it helped tremendously keep my wbc up!

My hair starting falling out about 3 weeks after the A/C, but I have a bitchin wig that I actually like better than my hair! 

Taxol for me is very easy. I stopped taking the anti-nauseu meds I took with the A/C as not needed with Taxol for me. No neuropathy as yet and only small side effect is I am having to take a nap every afternoon as my batteries start to run a little low. With taxol, it cause my eyebrows to start falling out.

You must, must excercise everyday (going for walks with my dogs and husband is my fav), eat lots of fruit and veggies and DRINK THAT WATER! It helps flush out the poison in your system. I drink about 64 oz per day of water, Get 8-9 hours of sleep everyday. 

Good luck and keep a positive attitude!

snickers123

Your chemo treatment is right on! The A/C every three weeks for 12 weeks then onto Taxol weekly for 12 weeks is considered a 3rd generation treatment (meaning tried and true). Oncologists have come to the conclusion that a weekly Taxol dosage is better for the patient (not as severe side effects) and has a better long term outcome. I also have a port and am so glad I do! You will be getting blood drawn one week prior to your A/C then the day of the A/C. Taxol you will get it the day of the treatment.

If you like the numbers game, your oncologist has a scientific program that he dumps all of your pathology lab results in, your age, your lymph node status, etc and he can come up with an estimate of percentage of being cancer free. You might want to wait until you are further into your treatment to catch a breath of fresh air before you ask him for that data. I just got mine yesterday.

Also, you might want to ask him for a cat/pet and bone scan prior to starting chemo. It just gives them a baseline for after you are done with your chemo.....

good luck! keep yourself busy and focus on the positive things in life. Do NOT get on the internet too much as it can freak you out, so your research only with the well known cancer sites.

borntosurvive

The one "good" thing about dose dense that I found is that going every 2 weeks is hard on your body but it seems to go by quickly.  It's good that you have a plan now and can start to wrap your head around it all. 

sandik

Wait, A/C is the red devil one? Ahh! Yuk! Why was I thinking it was a different one?

synsan60

Im also new to this site, I am finding it helpful.  I will be starting chemo Monday, second of April.  It seems there are different treatments for TN,  so how can you really tell which one is more beneficial.  I am getting 4xAC, followed by twelve weeks of Taxol.  Its been approximately 8 weeks from my Bilateral Mastectomy (my choice)  When does the clock start ticking for treatment to be as effective, from the mastectomy or the time of diagnosis. I don't know if I'll get a port I would think so with twelve treatments of taxol.

Any info you can share will be appreciated to get me on this road of the unknown

sandik

I don't. Know the reason why different doses are given. I was told that since I just missed being stage 1 by. 1mm that I had two choices. I could have done the TAC all at once every three weeks for 6treatments. Or I could do this. She said this one is the more commonly used, because it is known to be affective. She said its a little more agressive but since Im young she recommends that I go agressive. So I listened to her.

CharB22

SandiK - I'm also TN. I had a lumpectomy in Dec with 4mm clear margins and no node involvement (yipee).

 I'm having dose dense (every 2 weeks) of A/C (red devil) and Taxol. I'm finished with A/C and just had my 2nd Taxol. The A/C was the hardest. I felt "flu-ish" for about 5 days - not quite nauseous, but not right either. I had tx on Thurs and then Neulasta shot on Fridays, although no Neulasta for Taxol. I had very bad bone pain with 1st Taxol, then I got pneumonia and ended up in the hospital for 4 days which pushed back my 2nd Taxol by 1 week. I actually think that extra week helped because I had 2nd Taxol this past Thurs and feel fine.

My MO put me on short-term disability for the next 6 weeks so I can rest and hopefully not end up in the hospital again. I asked her to and since I work for a very large company, I actually get paid 100%, so I figured - why not?.

Good luck with your treatment. It may not seem like it now, but it will go pretty quickly - I can't believe I only have 2 more tx left!! Then 7 weeks of radiation, but that should be a walk in the park...and my hair is actually starting to grow in -- I've got little stubbles everywhere!

Titan

Adriamycin is the (A) ,,,the red drug...C stands for cytoxin which is clear...so two different drugs...A/C...

sandik

Surgery is over. Sailed through it. Port is in. Now I wait to heal. Then off to chemo land.

synsan60

Had my first treatment of A/C yesterday April second.  So far so good, today I will recieve my shot of Neupogen which I have heard will cause my bones to ache.  Then a slight rest and another treatment April twenty third.  Countdown started. Good luck Sandik I'm right ahead of you

synsan60

Had my first treatment of A/C yesterday April second.  So far so good, today I will recieve my shot of Neupogen which I have heard will cause my bones to ache.  Then a slight rest and another treatment April twenty third.  Countdown started. Good luck Sandik I'm right ahead of you

snickers123

Synsan60 and Sandik

I am also triple negative, diagnosed 10/31/11, 0 node involvement, 2.5cm. I elected to have a bi-lateral. I had 4 AC treatments every three weeks and now am on weekly Taxol for 12 weeks. I found the AC relatively "easy" but the Neulasta shot kicked my butt. Made me feel like a bruised banana for 2-3 days after the shot. This Friday I will be on my 7th Taxol and I cannot complain, much easier than AC. I also have a port and am so glad I do! Makes the blood lab draws easier and chemo. Advice I can give you ladies is to excercise (walk everyday even if you feel yucky). It will help with your bone ache and any other symptoms you might have. Drink LOTS of water, eat lots of fruit and veggies. You will feel better if you do all of that. Good luck both of you!

sandik

Thanks. Same advice from a lot of people so it must work! What's the cream for numbing the skin on the port?

sandik

My latest....anyone know of anyone this happened to?

surgeon called.He asked how I was feeling. Told me that Im an exciting woman on paper. Haha He got my pathology report back from the last surgery. The margins were clean, which we were expecting. And they were wide, so now the radiologist can quit whining. (His words not mine haha) Then he said but I have some weird news for you. Remember when you did your MRI and I said that it looked like a node was positive but I told you I couldn't really tell? I said yeah. He said he took the sentinal node and that little cluster of 3. They were negative. So that always means it did not spread. They don't need to take more. So he didn't. While he was in there the other day at the re_excision, he said it was really close to where that one was so he took that too. The pathologist called him and told him it had macro involvement. He told me that he has never seen that before. He called my oncologist. She never saw it before, so she is going to talk to her colleagues and see if any of them have seen it before. He said he's sure its happened to someone, they just need to find that person. So, I will be going next week for a PET scan just to make sure it is not anywhere else. He said that is only because I am a weirdo and they don't know what else to do with me at this point. He said dont worry until I tell you to worry. We don't have to go back in. As of right now your treatment will be the exact same. You are no worse than you thought you were 5 minutes ago. I swear, only me. Maybe since im such a medical marvel, they'll waive all my medical bills for me! Haha

Luah

If there's one thing I've learned through this BC journey, it's that no one can ever say something or nothing "always means..." such and such.... if that makes any sense. I don't mean to scare anyone but there have been TN women on these boards with clear sentinel nodes whose cancer went on to invade other parts of their body... this can happen. Similarly there are women with micromets or macromets in nodes that are doing just fine. And sometimes, rarely, the actual sentinel node is clear but another nearby node if affected... or the sentinel node is not immediately evident, so a cluster of nodes are taken.  

When my micromets were discovered I had a choice of more surgery to remove all nodes or additional radiation. If you google this, you will find a great debate among doctors about the best course of action... it seems that the radiation route has recently proven equally effective as an ALND is these cases. Watchful waiting might also be an option for micromets, but for me for TN, I considered it too risky. (At the time, I chose an ALND and had the reassurance of knowing that the other nodes were in fact clear.)   

sandik

Well, I don't lnow what an ALND is. But, a PET scan should show it of it's there, right?

Luah

ALND: Axillary lymph node dissection  (i.e. surgery to remove nodes). I understand PETs are very sensitive, but I don't know if they show cancer at a micromet stage - your doctor can advise. 

LNBCA

My Mom just started today, she will have 4 dose dense Cytoxan, Adriamycin, then (I believe this is correct) 4 dose dense Taxol, after treatments she will have a double mastectomy. My sister and I went to her first treatment today with her and it was not as bad as I thought it would be. A few times I had to really fight back the tears, just because I feel so bad for her. She's been through hell the last few weeks. I honestly was more nervous than her, she handled it so well and I'm so proud of her for being so brave. They do not believe she has any nodes involved (thank God!!!!!!!!), her Dr. she saw yesterday and her Onc. today both said her PET scan and MRI both looked great.

sandik

Glad to hear your mom did well. Im going for a MUGA scan on Monday and a PET scan sometime next week. I go Friday for my checkup with thr surgeon. Haven't taken the bandages off so Im anxious to see how its healing.

mb1024

I see that most of you have gotten (or will get) 12 weeks of Taxol.  I haven't started chemo yet, but my onco wrote down that I will be getting "dose dense AC X 4, & Taxol X 4." All treatment is every other week.  I'm definitely going to ask her why I'm not getting 12 weekly Taxol, but was wondering if anyone else got just 4.

Luah

Maureen, there are quite a lot of women who get the biweekly taxol... it is quite common. While a little harder to manage, it goes by quicker. I went with weekly, because there was some evidence (though nothing definitive on taxol) that a more metronomic schedule MAY be more effective for TN. It was pretty easy to take too, as each does is smaller... I felt mostly normal throughout. You could ask your onc about which he/she thinks is better....  

sandik

Everything is healing nicely. My boob is itchy. But it looks good! Muga scan was good. Had my pet scan yesterday. There was some kind of holdup on the insurance about chemo. So hopefully that will be straightened out this week so I can start!

LockeKopp

My chemo, port placement and Lymph node removal was delayed for 1 Week! Because of the insurance, it was a huge pain in the....

Did everything work out for you ?

mb1024

I saw my oncologist on Friday, and she said the treatment she is prescribing for me is the best I can get at this time.  She said if parp was available now, she would give me that, but it's only in clinical trials.  I asked her if being treated there (Englewood Hospital) is just as good as going to one of the big cancer centers, and she said "I also work at Columbia and, if I thought you could get better treatment there, I would send you there in a heartbeat.  You are doing everything possible."  I also asked her how we would know if the chemo is working, since my tumor and node were removed, and she said, "if it doesn't return, then it worked."  Kind of like Russian roulette.  She also said if it comes back, she would immediately get me into a parp trial.  She also said I'm not a typical triple negative.  When I asked why, she said because everything was so contained.  I should have questioned her further, but the nurse walked in and they gave me my first chemo date, and my head was spinning.