Taxotere/Cytoxan starting February 2012.

Neli143727 · February 2012

ColdenMon, Silviazara, Mom2JJ,

I hope your treatments tomorrow go well! I hope you have a peaceful day today too!

I have this book that I open in the morning randomly. When I opened my book while thinking of you Ladies this is what I found:

There is a force within that gives you life -

Seek that.

In your body there lies a priceless jewel -

Seek that.

Oh, wondering you!

if you are in search of the greatest treasure,

don't look outside,

Look within, and seek THAT.

- Rumi

silviazara · February 2012

Wavewhisperer thank you so much for your beautiful post. It really made my morning. And congrats on being done!!

I was already wondering how to add additional stuff in the diagnosis info that shows under the posts. Can anybody tell me? I am usually not this dumb, and I will blame it on chemo brain for now. Lol

silviazara · February 2012

Neli thanks for sharing!

I am so not looking forward to tomorrow ... well, at least I will be halfway down the road. I have a friend coming with me to chemo, another friends picking up my daughter from preschool. I am so lucky to have the nicest people around me! That really gives me strength.

silviazara · February 2012

http://www.youtube.com/watch?v=pBAV6m-H37M

Very touching video.Our kids are affected with our disease too, maybe even more because I think it's harder for them to face the fear. How do your small kids cope with it?

shera · February 2012

Hi everyone.... I see oncologist today to schedule treatment and first infusion. So I'm on the border of beginning in Feb or March.

I am slightly encouraged to see that everyone here is HER2-, and it appears only needed Taxol and cytoxan --- and not Doxorubicin. Am I correct? Over in the March 2012 thread... most are HER2+ and need all three drugs.

I've been diagnosed as HER2-, but I had a UMX with TE in January because I had multiple tumors, so my oncologist sent in a request for a more extensive pathology report ----- basically to make sure none of the tumors are HER2+

I find out at 3pm today. Quite stressed about it.... truly hope I can stay here as one of your HER2- sisters.

In any case... I wish you all the best! Looking forward to better times.... a wonderful summer 2012 with this behind us. Cool

Neli143727 · February 2012

Hi Shera!!! I hope you will stay with us!

Silviazara, to add something to your profile go to "My Home" then "Edit my Profile" add what you want and "safe". Thanks for the link! I am happy you have good people around you; you deserve it! XO

lmlola59 · February 2012

Wavewhisper that is fantastic news,can't imagine your excitement and relief.

Coldenmon,Silviazaza and Mom2JJ good luck tomorrows hope it goes well for you all.

Shera I understand as I am not starting till 2/28 but also think it is best to be with those that have the same cocktail.

I think this is a really great group of people and you may get some comfort here.Of course you are always welcome to join into both.

Wonderfull day to you all

Anonymous · February 2012

Wavewhisper - That post meant so much....you are right, there are some days when I want to crawl in the corner and never come out again...because I am sad, or it hurts or I just can't take one more single piece of bad news. But you are right....we will get thru this and when we come out the other end we will have been made stronger for it.

Congratulations on your last treatment - may you have nothing but clear skies and sunshine going forward

((Hugs))

Kim48 · February 2012

WaveWhisperer, Bless you for sharing your story. I am so happy for you. It gives us all something to look forward to! We will put this behind us. Thank you.

Firstcall: glad you are doing okay. It is amazing how people are so thoughtful. I have felt very blessed by the kindness of friends, family and neighbors. Even my parent 's friends and my sister's friends cooked for us.

Good luck to all of you who have treatments tomorrow! Will be thinking about you.

Gayle56 · February 2012

Silviazara - That was a very touching video, it made me cry. My daughter is almost 14 and she is having a tough time with it. She keeps asking me why did I have to get breast cancer. I can only reassure her that I am doing everything I can to stay healthy.

shera · February 2012

ok well I'm hoping for some feedback on this one!

Today, my onc and I looked at the two treatment options of AC-T, dose-dense 8 infusions over the course of 16 weeks vs. TC, 4 infusions every 3 weeks over the course of 12 weeks.

After factoring age, grade, stage.... etc ect.... there is just a 1.4% difference between the two treatments. I am leaning strongly toward TC x 4.

Thoughts?

(also... hope its ok, but I'm going to start a new thread for feedback with this deicion too..... I wanted to specifically ask those of you going through the TC regiment here)

momof3boys · February 2012

Hi Shera

I don't know your age or your Oncotype score or your lymph node and lymph vascular status? I am 43, Oncotype score of 16, no nodes involved and no vascular invasion...

My MO recommended TC x 4 for those reasons, plus I believe she told me she would not recommend 'A' because of a risk of heart damage later on. I think it my stats were different, she may have. A close friend of mind had similar stats as mine, but had 2 involved lymph nodes and did six treatments with "A" (she called it "red devil"). We have the same MO....

shera · February 2012

momof3boys --- I'm very similar to you. 44, no nodes, clear surgical margins. I have not heard anything about vascular invasion (is there a specific test for this?). I asked if there was a way to test is anything spread through blood vessels and was told no. But my PET scan was clear outside of right breast. I've opted out of the Oncotype test -- because I plan to have chemo in any case. I would only like to know how responsive the cancer would be to chemo --- but I'm not willing to risk no chemo, so I'm saving the money. I had multi-centric tumors... there were 4 tumors, largest 2.5cm.

The red devil.... doesn't sound too appealing!

(Incidentally, even though there were 4 tumors sizes ranged from 1cm - 2.5cm in my B cup breast, the mammogram I had on November 11, 2011 -- 3 months ago --- found nothing. Nothing!)

Thanks for the feedback. This is encouraging.

momof3boys · February 2012

Shera- the vascular status should be noted in your pathology report. Before getting the Oncotype test done, my BS and MO said they were 90% sure I would need to do chemo because of my age (considered young!) and because my tumor was larger than 2 cm. But, when we got the Oncotype score back, my MO was on the fence about doing chemo at all... She said "I can't tell you that you'd be wrong not to do chemo, but I can't tell you that you'd be right" She did say that if it were her, she would do TC x 4. I'm really glad I got that test done, just one more piece of the puzzle, and definitely played into the decision to do TC x 4.

ColdenMom · February 2012

WaveWhisperer ~ Laughing So happy for you to be done with this! Thank you for the encouraging post!!

Good luck Silviazaza and Mom2JJ ~ I'm with you tomorrow!

I'm a bundle of nerves and never wanted to be back in the position of receiving chemotherapy again! I've taken my steroids, aloe, drank a lot of water and my supplements! I'm going into this as strong as I can and all of your posts have helped me get there! So thank you!

Neli and Bonnie ~ I hope you are both feeling well this evening!

I'll keep you posted tomorrow! Embarassed

Kim48 · February 2012

Hi Shera,

I had 2cm idc, no lymph or vascular involvement. Low grade, had double BX. I'm 48, oncotype dx 23. MO suggested 4TC. Hope this helps.

Good luck.

Mom2JJ · February 2012

Shera, my MO offered the same options but recommended TC. My onotype score was 27 and I had a micromet to one node, so Stage 1b, grade 2. DH and I agreed with her recommendation because the second option introduced a minute risk of heart damage for a small reduced cancer risk and because the MOs don't really know what to do with Stage 1b patients.

I believe there are three or four of us having second treatments tomorrow (woops, now today Feb. 23rd -- thank you steriods). Good luck to Siliviazara and anyone else having treatment tomorrow. Jap62, is tomorrow your day too?

I kept very busy pre-chemo day. I spent the day with my daughters. We celebrated their 8th birthday today instead of tomorrow/today (their birthday is the 23rd). (Actually, we have celebrated their birthday week this time -- starting last Saturday through this Saturday. They are having a wonderful time.) Very little nausea with the steroids this time, so I was able to have dinner and even a tiny slice of each of their ice-cream cakes! Tonight we opened presents and then spent an hour or so organizing our cold cap effort -- which is quite an undertaking.

We leave at 7:45 in the morning; premeds at 9 a.m. Last time (first tx), I threw up as soon as the premeds hit. MO believes the steroids triggered the nausea. I couldn't stop the nausea for several days unless I stayed completely drugged on Lorizipam. I took a phenergan tonight and will take TWO Lorazapam in the morning per nurse's order before chemo. They will give me Emend (again) and other anti-nausea drugs as well. I told my DH not to expect much from me tomorrow (LOL) given all of the drugs on board.

I'll report tomorrow or Friday at the latest on treatment 2.

I hope this is my last post tonight, but it is almost 1 a.m. and I am still wide awake after phenergan!

lmlola59 · February 2012

Shera,

I had clear margins no lymph nodes involved 1.6 size, Oncotype 13, grade 3, age 52, had a lumpectomy in Jan and am in Perimenapause.I was also told that the cocktail that has the A has chance of heart damage and more of a chance of causing Leukemia.My Onc said they prefer the TC because of these 2 factors and what they consider a young age.Onc found out after we did the Oncotype that in Boston They no longer even bother if you have a grade 3 just go ahead and recommend Chemo but I still needed to know.

I am not sure if the Perimenapause factors in here also with the diagnosis I believe it does.This is the one she recommended and it was a shorter duration and less treatments so it worked for me.

Also trying to go without a port and with only 4 versus 6 or more treatments they are willing to try it with no port.

And again good luck to all going today hope you got some sleep.

firstcall · February 2012

good luck to everyone having treatments this week!

Neli143727 · February 2012

Silviazara, Mom2JJ, ColdonMom Thinking of you today!

Shera, my oncoscore is 24. I have IDC - left breast, 4 tumors, largest 1.1 cm; one + node; grade IIa; mastectomy done and now on 4 cycles TC.

Don't like the SE - nausea, bone and belly pains, feeling tired, everything tastes funny, night sweats, and irritability.

A_FIGHTER · February 2012

Hi Ladies,

wavewhisperer: Yippee! Congrats! You did it! Laughing

silviazara:, Mom2JJ & Coldenmom: Sending postivie thoughts and prayers to you today!

silviazara & Mom2JJ: Halfway done! Wahoo!

silviazara: Thank you for sharing the video!

shera: I was told by both MO's the AC-T can lead to a future risk of Leukemia and heart failure. Also, it is longer. They both said that TC is the "newer" protocol regimen. I am 39 and had an Oncotype DX score of 14. My margins were all clear. I chose to do TC to be aggressive. I had lymph-node involvement & LVI which wasn't known until final patholoy due to everything being so small (micro). I went into surgery thinking I was all clear as Pet Scan and MRI showed nothing. My tumor size was .97 mm and the lymph-node size was .47mm (micro). I had a bilateral subcutaneous masectomy. My Cancer Surgeon told me I would have been back in his office down the road with BC in my right as final pathology read I had atypical ductal hyperplasia. I hope this helps!

Neli: Hang in there!

I emailed my infusion nurse yesterday about my nose and face breaking out: Her response was - the dryness/blood in my nose is very common as chemo causes everything to be dry. The blood is secondary due to the dryness. She told me to try saline wash/spray. Also, for the allergies/sneezing she said I could take something other than Benadryl or Claritin if it works better for me. As for my face (chin) breaking out, it could be from steroids. Also, in rare occasions Taxotere can cause this. She told me to keep in mind that chemo will have an effect on the hormones in my body and that this can be a secondary effect. She is going to speak to my MO and see if we can decrease my steroids a bit. As far as treatment, she recommends over the counter face washes.

I've been feeling pretty good other wise. The odd texture in my mouth is now gone. My tongue (towards the back) is sore. I've been to Boot Camp everyday so far (I've only missed two days of working out Day 5 & 6). I take occasional naps here and there. Today is Day 10 and no hair is falling out. Unfortunately, I did start my period yesterday!! UUGGHH!! Since post-surgery my cramping has been the worse! I actually had to take my surgery pain meds. for this. I didn't need the meds for post-surgery...LOL...I'm hoping this one will be better than the last two. I was really hoping it would stop due to Chemo.

Hugs,

Bonnie

shera · February 2012

Thank you all so much for all the feedback!

lmlola59, A_FIGHTER , momof3boys, Kim48, Mom2JJ and the rest of you -

this is all very good to know!! Thanks for sharing what your docs told you about the risks.

In my case -- my onc was set to get me going on AC-T... but because I had done my research (mainly because of this website -- and this very thread where I saw you all have similar marker of er+/pr+, HER2- ) I asked him about the TCx4 option. He thought it was going to be more like a 3% risk -- but he was nice enough to check the statistics and when he saw that its just a 1.4% added risk -- he told me we could go either way. Up to me. VERY glad I did my homework and especially grateful for this website and this thread!

And I hit me today... that there is no decision to make. There is simply no freakin way I'm going to do DOUBLE the amount of infusions with an additional drug for a 1.4% advantage.

So I'm joining you all for the ride. My first infusion is Feb. 29th.

Here we go.....

shera · February 2012

A_FIGHTER --- while getting tips today from a friend who just completed TCx6 (she was stage 1, HER2+ ), she told me about the dry bloody nose side-effect and advised me to get vaseline, put it on a tissue, and "get it up in there" !

ColdenMom · February 2012

Hello!

It was a long day today. I took my steroids as prescribed yesterday at 3am this morning I woke up and never fell back to sleep. We brought the kids to my parents at 7:30 and then off to Roswell Park. I started with blood work, a tissue expander fill, saw my oncologist and then went down to infusion at 10:15. At 10:45 I started receiving the premeds, Benadryl, emend, pepcid, and one other anti-nausea drug. That took about an hour - the RN was great. She started the I.V. With no problem!

So far so good until the Taxotere began. Two minutes in I felt very warm like I was burning up, followed by my heart pounding out of my chest, I turned bright red and then started having trouble breathing. It all came on at once. My husband grabbed my RN who stopped the Taxotere and flushed my IV. An order for hydrocortisone came down, she infused that for 15 minutes stating that I had an allergic reaction (not uncommon she said). We waited 1/2 hour and they began infusing the Taxotere very slow. I had no other reaction, so the IV steroid will be given next time along with the oral to avoid the same reaction.

The remaining of the infusion was uneventful - during the Cytoxan I did start sneezing and getting watery eyes but it wasn't bad. The RN said that was common too.

So tonight I am home I feel okay - I'm tired but I think it's more about being up since 3am! Hopefully, I'll be able to sleep tonight.

Mom2JJ and Silvia - I hope your treatments went well today!

Good Night!

Kelly

Kim48 · February 2012

Oh Kelly. So sorry you had a rough time. I'm sure that was scary. Hope you can sleep tonight.

Shera, So glad you were prepared today. Good for you. Welcome to our group.

Neil, Hang in there. The SE will improve and in a few days you'll feel almost yourself.

My husband updated my Caringbridge with my "heart" on my shaved head and my wig picture! It's at www.caringbridge.com/visit/kimosburn. No need to look, just couldn't get picture on here so thought I'd share.

I saw an HBO movie called "The Education of DeDe Ricks". Did anyone see it? Very well done documentary following a woman with breast cancer. Left my husband and I both in tears at times, but glad I saw it.

Hope Mom2JJ and Silvia are well tonight.

Bonnie, Like your page! I'm doing a 2 day walk in Atlanta in Oct.

My sons coming home to visit tomorrow. Can't wait.

Goodnight all!

shera · February 2012

ColdenMom - thankyou for sharing that in detail -- I'm so worried about allergic reaction so its good to know that they can slow down the drip to avoid it. I have allergies and environmental-induced asthma from smoke and other chemicals. oy. Good to hear they can adjust and continue.

How long was your first infusion? Mine is going to be 7 hours --- I can't imagine it going much slower than that. Just wondering if they went faster with you at first.

All these chemicals -- just so counter-intuitive to healing. Guess we just gotta have faith in the statistics

silviazara · February 2012

Hello, thanks everybody for your thoughts.

Kelly I am sorry you had a rough time. I heard Taxoterene causes these allergic reactions quite frequently. Good they reacted fast and you could finish your treatment.

I also couldn't sleep last night after those steroids. Or that's what I think..maybe it is just anxiety kicking in the night before treatment. I cut the Benadryl today morning to 25mg and I felt much better today - not sleepy as much. Actually, I was full of energy and spent my afternoon cooking and cleaning. The treatment went very well, the nurse put the needle in without any problems and completely painless. My friend was there with me the whole time so we spent time chatting and eating chocolates. The infusion lasted 3 hours. Shera my first infusion took 4 hours.

And,I went to this chemo with my hair on! No hat, no wig, my hair. Ok, it's 50% thinned but whatever. I really would never guess this could happen. And, btw who said the leg hair was gonna fall out? Mine is thicker than ever! Finally I shaved it, I couldn't bear looking at it anymore. Can't wait for it to be falling out!! Why the head hair first? LOL

Neli and everybody with bad SE after 1st infusion - it will get better soon. During my third week I felt 100% (ok, minus falling hair). But otherwise I felt very good. I will see what this second round will bring.

Mom2JJ · February 2012

I finished treatment 2 today (TC). Avoided overwhelming nausea (and throwing up) this time by taking a phenergan the night before, 2 Ativans 1 hour before chemo, and starting premeds with Emend rather than steroids. I started having problems with the Taxotere, so the nurse flushed the line and gave me iv Lorizapam and then resumed the Taxotere. With all of these precautions, this infusion was much better than the first with very little nausea this time. I kept my fingers and toes in ice during the chemo portion and ate popsicles and drank cold fluids. I had consumed 50 ozs before chemo and managed another 20 ozs or so during chemo. I also took my claritn at the end of chemo to plan ahead for Neulasta on Friday. I will take Claritin for 7 days.

I also have a port, to which I generously applied EMLA cream at 1 hour, 1/2 hour and 15 minutes before the stick (covered with tegaderm). Nurse said the length of time was the most important, so put the cream on that full hour before. I pasted the cream on very thick! The stick was painless.

Cold caps were much colder this time, so we hope that we have saved my hair despite not having them quite cold enough last time. Cold cap pain was manageable with one oxycodone for the entire day of cold caps. So far, I haven't lost strand of hair, but MO said the hair loss would not begin until after the second treatment, so we will see.

After we finished with the cold caps around 5:30 (at home), I had a grilled cheese sandwich and took a three-hour nap (thank you, Ativan). I am about to top off with another 50 ozs of fluids before bed to start the flushing and will take antinausea meds, Effexor, Miralax, and colace.

I have to work (at home) in the morning, take my claritin, get my Neulasta shot at 1 and exercise and drink plenty of fluids to start detoxing after the shot. So far, due to the improved nausea control, I feel much better than the first round. Now we have to watch for chemo fatigue and Neulasta side effects, but I am working to counteract both with fluids, exercise, rest, and Claritin.

Hugs to all with treatments this week!

lmlola59 · February 2012

Kelly sorry you had such a reaction to the Toxoterene but thanks for sharing so I will know what to look for.I think they told me I was getting the Steroid through the IV so hopefully won't have this problem,not completely sure.

Mom2JJ glad you had a better experience this time seems to be trial and error for all of us on round 1 as they can't predict how we will react.

Silviazara great you had smooth sailing you seem to be handling this very well.Hope I will do as well trying to go into it with that attitude.Amazing you have been able to keep up the exercising as you have its truly inspiring.

Shera glad we were able to help you with you decision one less thing to deal with. I will be going in the day before you and was told to expect to be there about 5 Hrs.I had my blood drawn on Tuesday as I was there for teaching so that will be one less thing to wait for.

Planning on going to the movies with friends and bowling with others friends this weekend to get it off my mind.Also have not yet told anyone but my hubby and 2 young adult children so may be a good time this weekend to come out of the closet on this.I find this the hardest thing as I don't want constant calls for updates or people treating me different.Amazing how often it is brought up in conversations when you have it and are aware of it but others aren't .Kind of like when you buy a certain type and color car all of a sudden they are everywhere.

I think I will not be able to hide it for long and bow out of invitations if I don't come clean.

No steroids the night before but I know it won't matter I will still not sleep

All have a great day off to do errands

gobucks · February 2012

Hello ladie. Wondering if I could join the group. I started chemo on feb 9th. I thought it was very doable. My onc listened to my biggest issue, which is nausea, so they through everything and the kitchen sink at me. Thank goodness they did or I would've had issues. I had the bone aches and taste problems like most of you. My worst issue was the bad headaches and migraine, however, I prone to them. So my onc and neurologist are working together. I think I just need to keep my migraine meds at hand and some more powerful stuff for pain.

But........here is my big issue, I was afraid to join the group, but I needed somewhere to go. I feel quite alone. You all are doing so well and as I writ this, I'm in the hospital. My WBC and neutrophil count dropped and I got a fever. It's so frustrating to have no control over this. My onc warned me that this could happened, but said its not common with this regime.....and it's not. When I went to see my onc, just for a normal visit during my nater, he was shocked that I was so low and felt and looked great. But he gave me antibiotics, and told me to call if my temp went above 100.4. I was positive I would be fine cause I felt great. Wellllllll, the following day, everything started to go downhill, and basically, my temp kept on rising. So on Wednesday, just two days ago, my onc told me not to wait his appointment that I had with him and to go to the ER. So my counts have continued to drop. They are pumping me full of fluids and antibiotics. I am not allowed to leave until my counts go up. I'm hoping they are up. I feel good, just tired. No more feeling like I got hit by a bus.

It's so frustrating to feel so strong, go through treatment and fel like this is doable and then get slammed by this. My onc did tell me that I am getting neulasta at my 2nd treatment which is March 1st. He is hoping this is the last time.

They just took blood. I'm hoping my counts are in the rise. I want to go home and spend time with husband and little girls.

Taxotere/Cytoxan starting February 2012.

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