To Chemo Again.. Or To Not + Rant

Lifeisbeautiful

To Chemo Again.. Or To Not + Rant

Lifeisbeautiful

I had my first AC on January 8th and have had spiraling troubles ever since.  The last of which I was treated for what they thought was a blood clot in my leg last Friday.  Thankfully that wasn't what caused my leg to turn red and swell up and turn hot.  It's still mildly swollen but getting better.

My second treatment was supposed to be on the 22nd but I opted out because of how horrible the side effects of the AC were.  I went in expecting the worst and got dealt more than that.  Nothing could have prepared me for what that stuff did to me.  I'm not naive and I'm not a lightweight either.  That stuff knocked me on my butt and I could NOT get up.  

 Every time I try to explain it all to my oncologist he either doesn't listen or tells me it's all normal.  I find that hard to believe.  Catatonic is normal?  Anyway, I won't go into all the details of the side effects but I'm still dealing with them DAILY.  

Now, I have a nurse that calls me once or twice a week.  They're really sticking the pressure to me now.  I saw my regular doctor last week who wants me to see a local oncologist and I'm trying to get in to him, having my files transferred.  I asked my current oncologist if there was another treatment option besides the adriamycin and he said no.  He won't give me the cytox without it because "there's no point in half treatment because you set yourself up for failure".  So every woman gets adriamycin?  What if you can't tolerate it?  Then what?  He dodges and keeps telling me "you did fine".  NO I DIDN'T!  And why won't they listen to me??  My husband was scared to death that I wouldn't come out of it.  

The nurse tried to tell me that my blood clot scare and nightly flu symptoms aren't related to the chemo and that if I don't complete my treatment that there's a 100% chance the cancer will come back and kill me.  ONE HUNDRED PERCENT?  I never knew anything in life was 100%.  She gets frustrated with me and fetches the oncologist.  He gets on the phone and says 70% chance it comes back and he doesn't think my problem is seeing an oncologist closer to home, he thinks I just need to come back up there and get treatment.  

Hummm.  I feel more and more like a statistic every single time I talk to these people.  Each meeting, whether it be on the phone or in the office I'm left in tears.  Absolute shambles.  No one listens to me!  

What would you do?  

maryannecb

....well....you are young, premenopausal with triple negative disease...no wonder they are urging you on! Your disease is aggressive and needs treatment...no antihormonals can help...not a candidate for herceptin...that leaves only chemotherapy.

By all means get another opinion to see if another cocktail might be as effective with fewer side effects....but barring, terrible toxicity like organ damage, sometimes SE have to be tolerated for the total good that the drugs will achieve.  What happened with AC that was that terrible? Perhaps if you share the details, someone else may have dealt with it and may know how to avoid whatever it was.

Hoping you can find some answers and get on with your treatment....ASAP.

dlb823

Have you posted in the Triple Negative forum?  I think this question needs input from women who are dealing with TripleNeg bc, so know which chemos are most frequently recommended, and they may not see your post here.  But on initial read, it does sound as if a second opinion would be in order -- if you can do it pronto.  Maybe something as simple as a different set of premeds, or the way your AC is delivered, would be helpful.    Deanna 

Lifeisbeautiful

Thanks.  I posted over there. 

roseg

Sweetheart - get thy self to the Triple Negative board and get on with this! Adriamycin is an important drug. You need to finish these treatments on schedule whether you have troubles inbetween or not.

Stage IIIa with 4 nodes and triple negative is serious. Chemo is hard, accept it. Your best shot is right now and you need to stick with it.

Sassa

I had 4 treatments with AC. It was rough (I vomited throughout the night for two of the treatments. The anti-emetics, even Kytril, did nothing for me).

 HOWEVER, the misery of the chemo is nothing compared to the suffering and dying of Stage 4 disease.  Read the Stage 4 thread.

I was only stage 1, but I still had a 45% chance of recurrence without chemo and herceptin.  You are triple negative stage III, your recurrence chances, if not 100%, is way up there.  You need to decide what treatment effort your life is worth and how big a gambler you are with the odds.

This may sound harsh, but sometimes tough love is called for.

Hugs and best wishes. 

bluedasher

But there are other chemo regimes besides AC. Perhaps Taxotere or Taxol and Cytoxin or Carboplatin.

jinnypel

Oh hunny it's tough these poison's the put in our body's just so we can keep on fighting this THING.  How about asking if they can give you some special cocktail drugs (I know more pharmacuticals just what you need right now).  I told my onco after the 1st set and he immediately prescribed me some other drugs which was used with my chemo drug (sorry I don't know what drug I was given as I didn't have much interest in the time as to what drug was going to make me better as long as it did - I'm slightly more clued up these days)

I felt absolutely perfect up to the 7th day of after chemo.  Then all hell broke loose, my temp was over 40 deg, I had an existing cold which didn't help the situation and I was loosing white blood cells by the minute ... I fought my onco every step of the way to be admitted to hospital but eish I've got to agree that he knew best ... a few days later I could hardly walk for being sick etc etc etc, but that was my own fault I didn't take them literally when they said no take away or getting in contact with other ppl a week after chemo.  I'll get slated on here if I admit what I did so I won't.   But sometimes the docs know best hunny and you may not see it right now but they have your best interests at heart, if deep down you think he/she doesn't then look for another.  But chemo you've got to have, that is our only weapon we TN girls have, use it!

otter

Post deleted.  This discussion is continuing on the Triple-Neg forum. 

otter 

ktym

Above post reported as spam

nancyh

Sorry you had such a rough experience.  AC is hard and certainly more difficult for some than others.  The thing is though, if you end up stage 4 you'll wish you did everything possible and I'm sure that is the perspective your oncologist is taking.  I've been stage 4 since Sept '09 and wish I could go back to the "easy days" of AC.  I assume you've got 3 AC treatments left?  3 rounds of misery to possibly save your life?  You can do it.  Also, you may find that the next few rounds are easier than the first.  You might consider asking for a dose of lorazapam as a pre-med before you even walk in the door to the clinic.  It will help your anxiety.