Anyone taking Adriamycin for Chemo

Nico1012

Lovelyface ~ This is really exciting news    http://azstarnet.com/news/science/health-med-fit/article_5038c80a-2197-5811-8481-e84a3539d3c2.html

Lovelyface

Nico1012, yes I read the article, it sure is very exciting news.  However, will it be on time to save me?  For me this tripple negative status is really very scary.  I am trying to be very positive that this ugly disease will not come back ever, after I finish my treatments, but everytime I read something, it reminds me of the danger which I face right now.  Time is of essence in my case, since it has already been 2 months since my first lumpectomy and a few doctors have remarked that I should start treatment.  As soon as I heal from this infection (yes, I had an infection from the second surgery), I plan to start chemo, possibly from Sept. 21.  I will just go with the standard AC and Taxol, as I am just overwhelmed and not sure how to go about shopping for another Oncologist and other better drugs.  With so much happening, one thing after another, including a drain,  a hard breast, pain, and this oncologist has already sent in the nausea prescriptions to the pharmacy, is going to do an Echo caridogram upon my insistence, it seems like I should just go ahead and start the recommended therapy. The Tumor board had recommended these drugs too.  I just don't know what else to do, what else to think, how much more research to do.  I met with a support group of newly diagnosed patients and it seemed like many of them (except two on clinical trials) were doing the AC & Taxol.

Nico1012

These are very hard decisions we face when fighting this beast. The best we can do is arm ourselves with the latest research (unfortunately it changes daily) and then go with our instincts.

Best of luck to you in your treatment, I wish you every success in this journey!

Nico

ruthbru

You want to go with what is best practice right now. It's the best you can do. Once I made my decisions on what I needed to do based on my tests, research and the doctor's recommendations (I did AC also), I quit reading what might or might not happen and just concentrated on getting through treatment and on to the other side.  I didn't even come on BCO for a long time, because I was at a point where I just had to get through it, and not even hear any more opinions. Best of luck! Ruth

Lovelyface

Dear Ruth

In an earlier post you mentioned that the breast does get back to normal.  Even a real hard breast. My left one is like a rock, so hard after the surgery, and there is a very deep dimple (long big cut), from where the infection was sucked out of.  When I sleep this thing burns.  Right now I have a bandage, but am wondering will this ever become a breast again.  And I am wondering this is the same place the cancer was, and then after the first lumpectomy, there was some cancer still left in there, and only after the second lumpectomy, all cancer was removed and there was a 3 cm clear margin.  And now my mind is playing games with me, imagining having infection in this same area.  The surgeon described the liquid which she took out of this area, as having a horrible bad smell.  I am so uncomfortable, not just with left, but right too.  I want to get to the treatment phase, but my God if only I can get past the healing.  I am most uncomfortable this weekend as it is hot, I am bandaged with a drain hanging out, and there is a pain somewhere in the left breast. I hope it is not another infection.  Please do tell me more about how this breast will heal, you said something about redistribution of fat.  Once healed, would I still have lumps?  How do they check a breast cancer patient after treatment?  I mean how do they check whether cancer has come back?  do they check only in the breast or the whole body for tripple negatives?

ruthbru

You will feel a lot better mentally when you get past this stage and actually into treatment. The finding out, surgery, deciding what you have to do is the very worst part. Your breast will hurt for a long time, but if you think you might still have an infection, be sure to get it checked out (I made friends with my surgeon's nurse and made many, many calls to her and several visits too). I slept in a recliner for a long time as that seemed more comfortable to me. What happens with the fat in your breast is that it 'settles' and does fill out the gaps. My tumor was on the bottom of my breast, so at first it looked like someone had sliced the whole bottom of my boob off (I suppose because that is what they did!), but after about a year, I noticed that it had filled out and now I'd say my breasts are pretty much the same size again (although I couldn't go bra-less even if I wanted to because the nipples are a little off). As far as checkups go;  I had a mammogram on the 'bad' side every six months for the first couple years and am now back to once a year on both sides. Also for the first couple years, they have you go back for rechecks with the oncologist every couple months, where they do blood tests, tumor marker tests etc. After a couple years, you 'graduate' to checkups every six months and, I believe, that after five years you only have to go back once a year. Hang in there!! Ruth

winter1NY

bumping for Jojo66

WhichWay2run

I agree that the AC treatment is scary.....I have finished my 4 bi-weekly AC treatments and I have the same fears, but my lymph nodes and tumor cannot be felt now at all.  I am scheduled for 12 weekly Taxol, starting in two weeks.  I don't know what to do either, other than trust that these treatments are the best we can do right now.  Please don't be so frightened, and try your best not to worry about what has not happened.  Hopefully, it won;t happen at all.  I am in perfect health except for this cancer, and I fear for my future health, too......but, I am going to concentrate on today's battle, and getting well as quickly as possible. I know it is very hard not to think about what may happen, but we don't know what will happen and should deal with only what we have on our plate right  now.....you/we don't need any extra stress.  Please take care and try to relax as much as possible, and yes, I know how hard that can be....I am a champion worrier.

Hugs and love, Peggy 

Lovelyface

Hi WhichWay2Run

 It seems like we are on the same regimen, except your Taxol is weekly, mine right now is scheduled to be 4 bi-weekly.  I haven't found many women who have been on Taxol, but have been on Taxotere or some other form.  Did you notice any pigmentation problems on you skin from the AC?  I have finished my 3rd and will have my 4th next Tuesday.  Today, I have noticed a lot of brown spots all over my body.  I am freaking out.  This is my first issue.

The second this is I want to ask you about your Taxol experience.  Have you started it yet?  How do you feel?  Is there much difference from how you feel with AC?  Are you nauseated or not?  Did you even have any bad SE from AC, so that you can compare with Taxol?  Thanks and I am praying you are doing wonderful with Taxol and that you have no SE.  12 weeks is almost 3 months, right?  I hope my body can take the Taxol every 2 weeks, if not, they might give it to me weekly too.  Thanks.

Claire_in_Seattle

Dear Lovelyface,

I didn't have any pigmentation problems from AC, but my skin did get a lot more delicate with Taxol.  Believe it or not, this affected me most with cycling tights as rubbed down there and got sores.  I also should have taken advantage of the "no fingerprints" and hired out for crime.  Ah, a missed opportunity.

Most patients feel a lot livelier on Taxol than they do on AC.  I certainly did, largely because my iron levels came back up to almost normal so I wasn't starved for oxygen.  I did get some odd feeling in my feet, but not real neuropathy.  I think I killed off my toe nails at the end of AC (I did six every two weeks) but they have since regrown and better than before. 

Other problem was body aches Days 3-5 and took ibuprofen, which helped.  I didn't take any other meds with Taxol other than vitamins and what they gave me at the infusion.

I asked my oncologist about needing to avoid the sun with Taxol, but he pointed out that this was Seattle in MID WINTER.  But otherwise, would have been a lot more careful.

Big plus, is that you are at the half way point.  YIPPIE!!! -  Claire

3jaysmom

just wanted to add.. i have a ad heart, diabeties, and M>S> ad everything checked before chemo. they didn't do a dense dose protocal on me, because i had bad reaction to the neulasta shot, which you get after ac?cytoxin. that was from the MS, not my heart. have heart cked every 3 mos.for 1yr., and no problems..and I"m NED now, so it was all worth it. it was all followed by lots of taxotere, and aalthough neuropathy; it couldv;e been high sugers i got from chemo. in my beliefs, for ME: it was all worth it, and i have a very thorough cardiologist who heartily agrees, and keeps cking! hope that helps..   3jaysmom

Lovelyface

Dear Claire

Thanks for your pointers on Taxol.  My skin is already a mess so to think of it getting any more delicate, oh that is heartbreaking.  Good to hear about the iron levels coming up.  I get breathless just coming up the stairs in my house.  I think I might be okay with the body aches, I just can't take this nautiousness, which is from AC. I just got my 4th round of AC yesterday and am suffering right now, with heartburn.  I also noticed my sugar levels rise from a normal 88 for many many years, to now during chemo to 113.  I am freaking out.  I heard that with Taxol, it will get even higher.  some say that it is the steriod which is given with Taxol, which makes it higher.  Now do I have to worry about having diabetes?

Yes, I am half way done, yeah!!!  Next one is Taxol. I want to fly through these two months, last one being on Dec. 28th.  Looking forward to Christmas, as that would be 3 more day to this hell being over.

I am very proud of you, yours is all over and you are doing well.  Thanks for continuing to inspire us.

Vina

Claire - how is your sugar levels after the treatment with Taxol?  Have you heard of anyone having Phlebotomist disease, which means having too much red blood cells.  I saw a woman at the infusion site today, she was having her blood taken out.  She said she was treated with chemo 10 years ago for breast cancer, yes she is a survivor alright.  I was just sitting there whether her chemo must have caused this new disease called phlebotomoist disease.  The nurse told me they have lots of patients who come there for having their blood taken out due to this disease.  I am thinking oh my God, I never want to visit that infusion site ever again, after I am all done with Chemo, my last 4 rounds of Taxol, and I am out of there, never to return again.  I never want to see doctors, oncologists again.  However, that is wishful thinking as I still have to consider a surgery once the chemo is over.  While I have already had one lumpectomy, one re-excision, and one infection surgery (caused by doctor's negligence), I have yet to consider bilateral mastectomy and reconstruction.

Fearless_One

Yes, I had 4 rounds of it - did so well I had 2 more.   Had a few Muga scans in between to make sure my ticker was doing ok.  

Lovelyface

Dear ClaireinSeattle - I am wondering how long did your taxol take to infuse?  Does it take very long?  Did you have any acidity problems and/or digestive problems with Taxol?  The nurse told me she will give me much more steriods with Taxol than they did with AC, I wonder how that will affect my eating.  I was eating like a pig with AC, I have finally calmed down, now that it is almost 13 days after AC, today.  I ate every half hour, as my body/blood/intestines seem to be burning or something.  I hope I am not allergic to Taxol. I am getting it this coming Tuesday and no matter what, I can't seem to relax knowing it is coming and how I will react to it.  Anyway, good thing is that it will be my 5th treatment, and only 3 more left to do, after that.  Time is flying and I am getting past all this.

I see that you are all done with all your treatments and on to your wonderful life.  Hope you are doing great!  Thanks so much for your post on Taxol, it helped me a lot.