Taxol/Herceptin
I have been posting in the other forums and just found this one! I had a bi-lateral mastectomy on Sept 16, 2008 (5 weeks ago). I had extensive DCIS in my left breast and decided to just take the other one to be safe. my nodes were clear!! However the pathology came back and I had a very small piece of IDC (.4cm). My oncologist has recommended 12 weeks of Taxol/Herceptin given weekly and then every 3 weeks of Herceptin for a year. I am hoping to still have children (37 now) or at least a choice about it. He feels that the weekly doses will be easier on my ovaries and also hopefully help with less intense side effects. Did anyone else do this course?
My Oncologist is at Baylor right now and very well respected. I have an appt at MD Anderson next week for a 2nd opinion. I have a feeling I will stay at Baylor because of the personalized attention I will get there. Who knows though.
I am scared to death of starting Chemo in the upcoming weeks. I am scared of losing my hair and the side effects. Suggestions???
Comments
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Am I the only one?
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I am on 12 weekly Taxol/herceptin. Personally.. I feel lit is no big deal. I have little SE. I have some bone pains for a few days.. but I don't take anything for it really. Herceptin for a yr so awesome for a cure... and I have no SE from it as many do not. I this that 12 week run is the easiest chemo treatment. As far as having kids...I do not know. I did loose the hair...and that did not bother me.. I cut 12-13 inches off. To me.. hair is an accessory.. I just got 3-4 wigs and wear beanies around the house. I have been hairless since I start AC chemo ( that was harder)... so that was in July.. I am ready for my hair to start growing back in Dec. ( I finish taxol then)... because I am tired of wearing a wig out all the time.. but I am not sad about my hair.
Md Anderson is GREAT! That is where I would want my second opinion. I am in KC, Mo... but my onco travels to TX to Anderson regular for keep up.. she works for our major Breast Center here.
So.. if you have to do Taxol .. 12 week,,, that run is easy.. I took of 9-12 months off work to go through my yr of treatment.. but on this Taxol... and on Herceptin.. I could work pretty easily.. and if you talk to others on here, I find their stories at the same. I have Heard the DD taxol ( 4tx every other week) is much harder. 12 weekly... easy...
IF you have any other questions you can PM me. I am new to all this too.. since June 25th.. but I can help with what I have already been through or an doing now...
Gods Love
Laura
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I am also in Houston and finished chemo last month. I had six treatments of Taxotere and Cytoxan plus Herceptin every three weeks. It wasn't a walk in the park but it wasn't something that you can't get through either. I am glad it is over though. It is a bit unerving when your hair falls out but you get used to being bald pretty quickly. Just think of it this way, chemo and lose your hair or no chemo and take a chance on recurrence....which one sounds better? I also thought about going to MD Anderson for a second opinion but my oncologist is well know and I investigated the treatment protocol which sounded in line with what everyone with my diagnosis/stage was getting around the country so I decided to stick with him. He trained at MD Anderson anyway. I just started radiation yesterday because I had a lumpectomy. I am continuing my Herceptin every three weeks until sometime next spring. I had my first treatment of Herceptin alone last week and I had no side affects at all that I could tell. I was tired but I am tired most of the time these days so hard to tell if that was because of the drug. I worked the whole time but had to take couple of days around chemo time to rest and get my body back in sinc before returning to work.
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I am in the middle of 12 weekly Taxol w/ Herceptin right now (just had #7 yesterday). I had 4 treatments of A/C chemo prior to this and, I agree with Laura that the weekly Taxol has been a breeze compared to that. I really don't have any side effects. I do have to give myself 2 injections each week of Leukine to boost my white blood cells and the side effects from that (low-grade fever and sort of flu-like feeling) are honestly worse than anything from the chemo.
I am not sure about the effect on the ovaries and possible future children. I am also 37 yrs old, but we have a 4 year old son and had decided when he was young that we weren't going to have any more kids.
I lost my hair on A/C but it has actually started coming back in since the weekly Taxol started. I went and got a wig just before I started my chemo and wear it most of the time since I work full-time. The hair loss was not fun to go through, but it is something I adjusted to pretty quickly. I will be glad when it really starts to come in though and I can ditch the wig and hats!
My chemo is neo-adjuvant, so I will have surgery after I complete the 12 weekly treatments...probably in December sometime. Then probably radiation and then I will do my one year of Herceptin. This part of chemo has been very manageable for me. On the A/C I missed almost a full week at work for each treatment (done every 3 weeks), but on the weekly Taxol I am only out the day of my treatment.
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hi christi
I have just posted on another HER2 board (starting chemo in Nov) - my surgery (left masectomy) 10/20 and I am now getting oncology opinions -- my HER+ status is newish (2.3 on the FISH)
. Per my visit with Sloan/NJ the protocol is the AC-2mos/T 2mos and Herceptin weekly during chemo and every 3 weeks after for the year. They also have a clinical trial of Taxol + Herceptin weekly for 4months and then herceptin only. .
I would like to look at the Taxol + Herceptin route... and will focus in on this with my next two oncology apts (the fact that at Sloan it was considered a trial had iniatially put me off)
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Mattscot,
Let me know how your appts go. I had my first chemo treatment last Friday and my next is thsi Thursday. I researched and researched and am a little relieved to have started a plan. Hope all goes well for you!
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How did the herceptin taxol regimen go for you. My sister was just diagnosed last month and her doctor is recommending it for her.
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Hi Cindy,
I just started the Taxol/Cytoxin/Herceptin regimen last Thursday (2/12); my program includes 4 full TCH cycles spaced three weeks apart, with H every week during the interim. Women with positive nodes and a similar diagnosis as mine with usually have 6-8 full TCH plus Herceptin, which is taken over a year. Frequency depends on insurance coverage and doctor specs. My side effects were normal and expected: stomach cramps, constipation, diarrhea, mild headache, fatigue, slight nausea (but managed by the meds), and little to no appetite. Neuropathy also sprung up in my right hand and legs; my onc has started me on daily glutonen supplement (10mg) to manage the condition. My cycle started at 9:45 and run until 2:45 or 3; that consisted of the full TCH plus all of the premeds (anti-nausea, saline, etc). The weekly H only takes about an hour and the only side effect I've noticed is the standard headache and runny nose. The TCH was challenging, but manageable. Be sure your sister drinks a LOT of fluids (water, juice, etc) and also takes a walk, even if brief. I've done both every single day, even when not initially up to it, and I always feel better. I also started acupuncture as a complementary treatment to minimize the chemo side effects. Good luck to her and all of you (the family); she will need your love and support to get through this, but she WILL get through it!!!
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Hi chemo_girl,
Are you sure that your drug regimen is T/Cytoxin/H and not T/Carboplastin/H? The reuse of the "C" for both Cytoxin (Cyclophosphamide) really confused me for a bit, but I think the standard protocol for HER2+ is the Taxotere / CARBOPLASTIN / Herceptin combo.
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ipursuit- I had Taxotere/Cytoxan/Herceptin also
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No, it's Cytoxin, which I understand is now commonly being used in lieu of Carboplastin. I think it has something to do with fewer side effects. Just looked at my notes and the T is actually Taxotere, not Taxol.
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I'm so happy to have found this link! I had a bilateral mastectomy on July 7, 2009. Stage 1, Nodes were clear, HER2+, ER+, PR+, BRACA1+... My oncologist is giving me the choice of two treatments. AC X4 cycle then Herceptin for a year or a clinical trial. the clinical trial (phase 2) is TH (Taxol/ Herceptin), 12 weeks of weekly dosage then Herceptin for a year. I will have to remove my ovaries later on and hormones therapy for 5 years... I'm reading a lot about Taxol, I know it's effective... the trial would be easier (side effects) for me. Is anybody on this trial? My oncologist doesn't want to overdo the toxicity because my prognosis is good! I'm leaning for the trail... manue.
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Hi Manue - I'm glad you found this link too. I am also from MA and we have similar diagnosis. I did not test positive for the BRACA gene, but did lose my mother to this disease. I was also offered the same trial and after a lot of reading and soul searching did decide to do the trial. I was most afraid of the potential heart issues when combining the Adriamycin and herceptin. I finished up the weekly Taxol/Herceptin portion in June and now just receive the herceptin every 3 weeks. The side effects for me of the taxol were limited - the only issue I had were my hands and feet (mostly hands) would itch on the inside like crazy and then around my knuckles got all crusty and itchy - so bad that they stopped it for a week. Other than that I sailed through taxol.
How are you recovering from the Bi-lat? So much all at once, isn't it?!
Patty
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I finished my 12 weekly Taxol/Herceptin in Jan09 and now take Herceptin every 3 weeks till the end of the year. I started this thread when I was trying to make decisions. Making all those decisions is a hard time to go through. What I have learned is that everyone, every diagnosis is different. One chemo regimen might treat one person very different than the next. Many said the Taxol was an "easier" route however I had some pretty intense side effects. I had very painful neuropathy in my hands and feet. Also, my fingernails and toenails separated from my nail beds and the toenails eventually came off. Also around week 6 I felt pretty bad. However, that being said.... it is done and it is doable. AND like I said... every treatment seems to effect people in different ways so you never know how you will do on it!
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Manue, the risk of recurrence for even small HER2+ cancer like ours is high without chemo or Herceptin so it is desireable to do something but it should be low risk. The Adriamycin in AC-TH has a risk of long term heart damage that has a 2% risk of making one unable to get the Herceptin and if one is able to get the Herceptin, the combination has a higher risk of heart problems. Another therapy, TCH (Taxotere, Carboplatin and Herceptin) was tested in one arm of the BCIRG 006 clinical trial and had as good results as AC-TH and didn't have the long term heart risk. Herceptin without Adriamycin may lower LVEF (left ventrical ejection fraction of the heart) which will be monitored but the heart will recover after Herceptin is stopped). The short term side effects of TCH are also lower. So if you decide not to do the trial, you should ask your oncologist about doing TCH instead of AC-TH.
In BCIRG 006, recurrence was 7% for node negative women, but most of them had larger tumors than us so our number should be even better.
Taxol and Herceptin looks promising for Stage I HER2+. If I was offered the trial I think I would have taken it. With chemo and Herceptin, our prognosis should be quite good and you can also benefit from hormone therapy.
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Thank you Bluedasher. I asked my Oncologist about TCH after getting responds from this site and she thinks that it would be over-treating me! With a small cancer, not involving lymph nodes,which as been completely resected she believes that I still need Chemo but wants to minimize side effects and toxicity! If I had a larger tumor or Lymph involvement she would have treat me with AC followed by TH. The risk of heart problem with Adriamycin is scary to me!
CristiC - Were they able to give you anything with the neuropathy like acupuncture?
Pmellon - I'm recovering really well from my operation, thank you. I'm walking about 40 mins every day. My chest still feel very tight but it's getting better. I have an appointment next week with my plastic surgeon for my first saline water injection...
I'm reading and reading a lot of good info on Taxol/Herceptin... I need one more phone call to my oncologist! Manue.
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Manue -
So your onc is giving you a choice between overtreating with AC TH, which she admits is not appropriate for you, or being in a clinical trial with an unproven therapy. I think its wonderful when women want to join clinical trials and potentially help find the most effective forms of treatment. In your case it is probably low risk. But clinical trials are supposed to be voluntary. Unless there is some medical reason she is not offering you TCH along with the option for the TH trial, it seems like she really isn't giving you a choice about joining the clinical trial, but is pushing you into a corner. If there is no medical reason she is not offering TCH, her behaviour seems very unethical.
Her priority seems to be enrolling patients in the trial, not on looking out for your best interest.If you truely want to do TH great. But your onc makes me very uneasy, I would consider getting a new one.
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Orange1 - Sorry I think I wasn't clear on my 2 treatments:
1) AC (Adriamycin/Cytoxan) then H (Herceptin) for a year every 3 weeks. Hormone therapy for 5 years. ovaries out.
2) Clinical Trial with TH (Taxol/Herceptin) weekly for 12 weeks then H for a year every 3 weeks. Hormone therapy for 5 years. ovaries out.She thinks AC (Adriamycin/Cytoxan) then TH (Taxol/Herceptin) is too strong, the same for TCH (Taxotere, Carboplatin, Herceptin).
Thank you for the quick answer.
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I did the weekly Taxol/Herceptin and then Herceptin every 3 weeks and this wasn't a trial. It is given more and more often. I was also stage 1 - no nodes.
Manue - Check the IDC board for a thread called "Mushy Middle". I posted there alot when I was making my decisioon about which chemo route and there is some good information there.
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I still don't understand why she would even consider giving you Adriamycin, with its risk of both early and late heart damage, for your diagnosis, especially when both TH or TCH (either 6x or 4x, if you're going with unproven therapy) is available. There must be something I'm not getting here.
Best of Luck.
Jackie
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MD Anderson here in Houston would have given me the Adriamycin as well. I ended up staying at Baylor here but the AC is a recommended course as well.
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Hello ladies!
I'm very confused. One ONC told me that I need TCH 1/3 weeks and Herceptin for 1 year evry 3 weeks, and another oncologest told me ACx4 then TH for 12 weeks and Herceptin every week for Year. So I don't know what to do.(I didn't know that TCH it's still trail).
Please help me to make a decision.
Thank you.
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Hi karina
TCH is not still in trial. TC followed by H (perhaps abbreiviated TC H), is being studied in a trial. There is another thread in the Her 2 forum called TCH or ACT chemo for Her2+ that discusses these options. I will bump it for you. Both are well tested and proven to be effective.
AC TH has 2 large trials demonstrating effectiveness. This regimen carries a slight risk of heart damage. TCH has one large trial demonstating its effectiveness. It carries a much lower chance of heart damage and is generally thought to be a little easier to tolerate than AC TH. For a while most Her2+ got AC TH. Then it seemed node negatives started getting TCH more and more. Lately on these boards, it seems like even node positives are starting to get TCH as well.
PM me is you would like me to send you the studies or would like to discuss your options. I have read the studies so many times I practically have them memorized.
Keep in mind there is no wrong choice between these two options. Both are proven to be effective. Good Luck.
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Thank you very much! We have similar diagnosis , but I have one node positive.
What kind of tritment did you resived?You was able to work?
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Hi Karina: I did TCH April - July of 2008 then Herceptin every 3 weeks, finishing up in April. I took some time off during "chemo week", but I worked throughout treatment and felt pretty good most of the time. I, too, recommend the TCH thread to you - it was a lifesaver during chemo!
Best wishes to you. You can do this!
Sue
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Sue-Thanks.
Did you had port?
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Yes, Karina, I had a port. Actually, I still have it since my oncologist left it in for a PET/CT scan I had in June. I see him Tuesday, and we'll talk about getting it out then.
I'm happy to answer any questions you have! I know how terrifying this all is to you right now, but seriously, I was surprised by how much "normal life" I could lead during chemo.
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My port was plsed 3 days ago and it's still very painfull, I can't move.I have test in college next week I'm very worry that the pain will not go away.How long it's take to heal?
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Sorry you're having this problem with your port. I had my port placed on a Monday then had a mastectomy on Tuesday, so I healed from both together, so I really can't answer your question about the port only.
If it's still painful on Monday, call your doctor.
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Karine, I had a port put in back in Feb. before started chemo. It took about 2 weeks to be totally healed up. Each day it was a little better. Good Luck with your test. Annette
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