Taxotere, Carboplatin and Herceptin

ashla

Dance and Moonflower,



Wow...you two have really had the scenic route to breast cancer treatments.

Dance...you had a feeling before you even started that it was gonna be this way didn't you.

.



You two can save all the forum posts for your expert advice book on making health care decisions choices that require the Wisdom of Solomon !



Best wishes to all.....

lago

Dance I remember back when you didn't want to do chemo and look at you now. Talk about a fighter. You'll get through this. Sucks that you have to fight so hard though.

Moonflower the same for you as well.

Relda

Hello ladies!

Saw my onc on Wednesday and he put me on prednisone for the Sweet's Syndrome lesions and within hours they were already starting to fade. Yay! He also decided that in my fourth and final tx this coming Wednesday that we will either do the Taxotere and Herceptin only, or possibly stop the chemo altogether and just do Herceptin!! He's going to think on it and decide when I get there. Wooohoooo!! So so happy to at least be done with the Carbo! And maybe both. At this rate I might have a wee bit of hair to play with by the end of the summer lol!

dancetrancer

Thank you everyone for the encouragement - it makes such a difference for me!!!!!!!!  I swear my heart warms with each post!  

So yes, SpecialK pm'd me back with fantastic information (THANK YOU SO MUCH AGAIN SpecialK!!!!).

I feel SO much better right now, b/c I feel like I have a plan.  Here is what I plan to do and discuss this morning with my onc:

I am declining Procrit b/c it is not indicated for patients who have a high chance of being cured from their cancer. I do not want to negate the benefits of my treatment. Nor do I want the heart/clotting risks.

Most MO's do not transfuse unless you go below 8, OR, if you are symptomatic at 9 (extremely lethargic, dizzy, confused, light headed, or SOB). So, I would like to wait and see what happens next week, and decide then. I'm hoping by then my WBC will also be up, so the transfusion will be less risky. On my first TCH, I recovered from a Hgb low of 10.5 on day 9 to then a high of 15.8 by the day before my 2nd TCH! (Day 9 = 10.9 Day 10 = 10.6, Day 13, 10.7, Day 20, 15.8). So I may recover naturally on my own by the time of my next TCH.   Also, I'm not worried about needing multiple transfusions, b/c I suspect if I get one next week, I wouldn't need another one until after #4 (based upon my pattern thus far), and I am planning at stopping at 4 chemo's.

If I do need a transfusion, here is what I will be asking for:

1) my blood "all the way" which is irradiated, leuko-reduced and CMV negative, just to be safe.
2) a "transfusion reaction" which is demonstrated by an increase in body temp of greater than 2 degrees during transfusion, is uncommon. I will request my MO pre-med me with Tylenol and Benadryl prior to transfusion to minimize this risk.

I have learned that there are risks of TRALI, which is a lung condition resulting from transfusion, extremely rare, and any other blood-borne illness that escapes the screening process - also exceedingly rare.

Again, I cannot thank you all enough for your continued support.  You are my lifeline to staying sane through this!!!  

dancetrancer

Relda - that is FANTASTIC news!!!!  Yayyyyyy!!!!!!!!! 

mt4ever

Dancetrance - I agree with you 100% 

We definitely need a like button! 

Relda

Thanks DT - and I am glad you have a plan together - makes tons of sense.  Hope it all goes well!

Moonflwr912

Yay Relda! DT, glad you have a plan. I am sitting here just got my benedryl and tylenol pretransfusion. hoping things go as well as last time. Settling on for about 5 hours. Glad I brought my ereader! LOL. Not where I wanted to be, not exactly doing what I want, BUT licking BCs butt! Works for me, even if I seem to be on the scenic route! Much love to all.

dancetrancer

Moonflower - please tell us how you are doing!!!  Hope all is going smoothly like it did the first time for you!!! 

All  - Guess what! I have great news! My hemoglobin was UP from 9.1 yesterday to 9.7 today! I am keeping my fingers crossed that the upward trend will continue through next week like it did on my last cycle. So excited, I may squeeze by without any intervention needed! Oh and my ANC was up to 756, so finally my whites are coming up with the neupogen. I started this 2nd round of shots on Tuesday. Will skip tomorrow and give self one on Sunday and retest Monday. I should be feeling pretty good by Monday or Tuesday. Fingers crossed. Yahoo!!!! Actually, I feel pretty good right now, just can't do more than 3 or 4 stairs at a time without my heart rate jumping up, so I am couching it mostly. LOL No symptoms at rest!

Doc was cool with my wish to wait and watch.

I am so happy!!! I hope everyone has a WONDERFUL weekend!

Oh and yeah...with all the upgrades...they couldn't give us a like button?  LOL!!!  

Moonflwr912

DT, I just got home, everything seems to have gone well. whew. I am happy you may not need a transfusion my numbers just kept dropping. For me, so that's why I did that. Everyone have a good mothers day weekend.

dancetrancer

Moonflower - great to hear from you and glad to hear all went well!  I'm not out of the woods yet, but I have a plan in place and am feeling much more comfortable doing a transfusion should it be needed.  Have a great weekend!  

imatthew

Question for the ladies on behalf of my wife - she finished TC over a year ago (March-11) and Herceptin in November.  She's 51 and had menopausal symptoms during chemo but hadn't gone through menopause yet.  This week it appears her period returned.  Has anyone else experienced this?

Omaz

Hi imatthew! I was 51 when I did chemo and I went into chemopause during treatment.  My onc waited over a year after I finished chemo to see if my periods were going to come back so he knew which anti-estrogen medication to give me.  It looks like your wife is ER- though, is that right?  If so my understanding is that she doesn't have to take any anti-estrogen medication and that it shouldn't be a problem if her periods comes back.  It's the ER+ women that have to have that monitored.

lago

imathew I finished chemo a few months before your wife just before my 49+1 birthday. I'm currently 49+2 just like your wife. I went into chemo-pause and stayed there. What does her onc say about this? I under stand she is Er/PR- but there still might concerns with periods returning. Are you both sure it's her period and not something else. I would think a talk or visit with both the onc and gyno are in order.

imatthew

Thanks for the responses. Yes ER- so no further treatments since herceptin ended. She goes to the ob-gyn tomorrow.

dancetrancer

Hey all,

Did any of you have severe reflux that did not resolve with medicines?  Mine had been getting a bit better (not great, but some improvement) when I went to a double dose of Protonix (40 mg twice a day).  Note I have a history of pretty bad reflux prior to chemo, but had finally achieved control with once daily prescription omepremozole (40 mg).  In the past I had had to be on twice daily Nexium and Reglan for months due to severe flares.  I had weaned down to once a day proton pump inhibitor prior to chemo and had been symptom free at that level of medication.

My doc told me to add Maalox on top of my current meds as needed to try and keep the heartburn/burping/indigestion down.  It's ridiculous the level of meds I am taking to try and control this, yet I am still getting severe break through symptoms (I'm pretty miserable).  For example - yesterday:

2 Protonix (40 mg each)

2 Pepcid (20 mg each)

4 doses of Maalox (max allowed on the bottle - resulted in diarrhea today and the day before)

2 Zofran b/c I just couldn't take it any more (I get nausea with my reflux, too)

Despite all of this I STILL had terrible indigestion yesterday.  I feel like my esophagus is being ripped up!  

I'm trying smaller meals today and more liquid diet type stuff.  I am better in the mornings when my stomach is empty.  I am worst in the afternoons, not nightime, like most others experience.  I suspect I have poor gastric emptying, too, b/c sometimes I get really bloated after meals.  I have scar tissue in my abdomen from an old appendectomy (that got infected), and my GI tract has never been the same since.  I think everything gets backed up and pushes the acid further up my esophagus.

I'm worried I won't be able to do my 3rd TCH on time if this doesn't resolve.  It's a week from Tuesday.

Anyone else have this bad of a reaction that didn't resolve with intense medication like the above?  It seems WAY over the top to me, like something is really wrong.  (I get blood drawn tomorrow and will ask the nurse to talk to my onc about my symptoms continuing.) 

lago

Dance that would be me. I did have terrible acid reflux (lost my vioce for a while) a few years prior to diagnosis. Protonix didn't work for me at all back then. On chemo I did Protinix then Nexium but had to take Carafate Suspension in add ition to the Nexium at the end. This Carafate was the stuff that worked for me when I had acid reflux. Prolosuc never worked for me.

BTW I had to suggest the Carafate to my onc. She new what it was. I explained this was what had worked for me before. She had no problem prescribing it.

dancetrancer

Were you on double dose (80 mg a day) of the Nexium and double dose of Pepcid, too?  I have tried the Carafate Suspension in the past and it didn't do anything for me, unfortunately. :-(

lago

No I wasn't on a double dose. BTW you do know that long term use of those can have a negative effect on your bones.

Maybe you need to see a gastroeninologist. S/he might have more ideas.

dancetrancer

Yes, I do know that I am petrified of it.  I was trying to wean off when I had to start chemo.  I am going to ask about seeing a gastro.  I doubt I'll be able to get in before next Tuesday, but maybe my doc can see about pulling some strings for me. 

Moonflwr912

Oh DT, I hope you find relief soon. Much love and (hugs)

Relda

Sorry DT the only thing that worked for me the first time was Nexium.  This time I was able to control it with Tums and Pepcid AC.  It's the only SE that was milder for me than it was in my first go-round - everything else was worse x 10. 

Have you tried drinking an Aloe concentrate?  I just realized I have been drinking, I get a  protein shake for breakfast every day made at a local Herbalife nutrition club (so yummy) and the Aloe drink comes with it.  Maybe that's made a difference as well, I honestly didn't think about that.  Here's a link to the product I drink, maybe this can help.  I really had bad bad bad reflux the first time, and as I said, this time its been very minor.  The Aloe is the only thing I've done different.  Didn't take Nexium this time because my insurance no longer covers it.    http://www.amazon.com/Herbalife-Herbal-Aloe-Drink-Concentrate/dp/B002MWGN0A/ref=sr_1_2?ie=UTF8&qid=1337006749&sr=8-2

Relda

Also DT - if you do want to buy some let me know, I am a distributor (I do it cause I get a discount on everything I buy if I sell as well, I buy their shake fixins' cause I LOVE the shake they make for me so much I make it at home too).  Anyhoo, I can order it for you and have it sent to your house......

lago

Dance I know the other day I had stomach bloat & discomfort. I think I ate too many peanuts. Anyway I was going out to dinner with a former co-worker for sushi… and happy that I was. The pickled ginger really helped settle my stomach. I ate every bit on my plate.

dancetrancer

Hi everyone and thank you so much for your suggestions and support.  I seemed to do much better yesterday with the small meals (actually had enough relief that I napped!), but it started flaring bad a bit later in the day - around 5 or 6 p.m.  I took more Maalox and had mild relief for about an hour.  Then I realized I had Carafate left over from my last flare (I checked the expiration date).  I usually don't take anything (especially an old script from another doc) without my onc's approval, but as you all can imagine...I'm getting pretty desperate after 11 days of this with only modest relief!!!  Lago, I figured since it helped you I'd give it another try.  Thank you so much for reminding me of it.  I seemed to be a fair amount better last night and this morning...but the jury is still out since my symptoms are always worst between 2 p.m. and 7 pm (isn't that odd?  I know most people are worst at night when they lay down.  That has never been the case for me.  Always worst around 3 or 4 p.m.)

So, I had bloodwork this morning and told the nurse started taking the Carafate and all she said was "that's good stuff".  Didn't tell me I couldn't take it, so I'm continuing on.  I didn't get to see my onc.  I believe he is out this week and the nurse practitioner is handling much of the stuff.  They didn't have any other suggestions for me.  Oh darn it!  I forgot to ask about a referral to a GI guy.  My head is not on straight lately. 

My white counts are up, YAY, no more neupogen.  My hemoglobin which was up Friday is down a little bit today, but still hanging at 9.3 so we are still in wait and watch mode.  Platelets have dropped below normal so we are watching that as well.  

Since my whites are up, I'm going for acupuncture this afternoon.  Nurse said my platelets are high enough, not a risk from a bleeding standpoint.  I'm hoping it helps with my myriad of symptoms.  I will try just about anything at this point!  I did it a couple of times prior to my last TCH, and I found it to be helpful. 

Relda, we have a great organic store here that sells all kinds of funky stuff.  I may stop by today and look at their aloe drinks.  Thanks!  

dancetrancer

Just wanted to share that I was able to get an appt with a gastro doc for tomorrow afternoon - I couldn't believe I could get in that quick!!!  I'm so psyched! 

lago

Someone probably cancelled. It happens. Looks like the starts might finally be aligning for you Dance

Moonflwr912

DT, glad for you, hope they figure it out soon. There is an aloe drink with mangosteen you buy in the refrigerator section of a regular store I really like it. Maybe that will work for you too. Much love.

dancetrancer

Hello everyone!

Well, first off, I am definitely improving!!!!  Still some indigestion, but this is definitely a tolerable level.  

I saw the gastro doc today.  He confirmed to me that I am on the max meds I can be on, minus one other script he gave me for when my symptoms are severe.  It is called "Green Cocktail".  Basically it is Mylanta plus Lidocaine plus Donnatol.  The Lidocaine numbs your esophagus and stops the pain.  The mylanta as we know is yet another acid reducer, but it is part of the cocktail.  The Donnatol is new to me, although I think I've heard someone mention it here before?  I looked it up and see it is an antispasmodic drug, often used for intestinal cramping.   Active ingredients are listed as: phenobarbital, hyoscyamine, atropine and scopolamine.  Sounds like some strong stuff.  I will reserve it's use for when I am having moderate to marked breakthrough symptoms.  Maybe I won't need it next round if I continue to improve and go into the 3rd round on my current regimen of twice daily Protonix and Pepcid and 4 x daily Carafate. 

He said without a scope there is no way to know definitively if I have severe damage to my esophagus, although if I had a stricture I would know b/c I'd feel like food was getting caught in my throat (nope, glad that's not an issue!).   He said he thinks the risk of me doing severe damage with 2 more TCH's is not high, despite my symptoms.  He said that surprisingly, you cannot equate severity of heartburn symptoms with the amount of actual damage/erosion happening to the esophagus.  I had read about this a little, but it was good to get confirmation from him on this.  Apparently, some people's esophagus becomes hypersensitized to acid, so they can have terrible symptoms, even if there is no actual erosion happening.  He said he's done scopes on people with terrible GERD sx, and it comes back as no erosion (my previous scopes have shown Grade I esophagitis - but my symptoms have never been this bad).  He said those patients are so frustrated b/c the test shows nothing.  Still, he said, doing a scope is indicated b/c you really can't tell anything without looking.

He'd like to do a scope on me before my next TCH and is willing to come in extra early Friday morning at 6:30 a.m. for me despite his schedule being full.   What a great doc!  I told him about my platelets being low and my anemic state (showed him today's bloodwork), and he said he's done scopes on people in way worse condition without issue.  I told him I'd need to see what my onc says.  I personally am very undecided on whether to take the risk of the test or not...will definitely be leaving this one up to my onc!  

I told him the Carafate is definitely giving me constipation and asked about how often I can use Miralax.  He said there is no major risk with Miralax b/c it is "natural" vs. a stimulant type of laxative...so I can use it as needed.  

I asked him about the possibility of having slow gastric emptying, and he said without major testing that is not something we can know.  

I asked him about my green tea - I switched from coffee to green tea to decrease the reflux.  He said even the caffeine in green tea could be a culprit in further aggravation of symptoms, as caffeine relaxes the esophageal sphincter.  I had switched to decaf green tea a few days ago, just in case (and suffered the lovely headaches from caffeine withdrawal).  So, I will continue with decaf green tea...hope it still has the same health benefits!

My hercepetin infusion went well this morning, no issues.  My hemoglobin is the same (9.3) and my platelets are worse (100).  The nurse told me though that they don't do platelet transfusions unless you get down to under 20.   I think, though, perhaps I should cancel future acupuncture.  I bled like crazy and have a good sized bruise from one of the needle spots. 

I guess that's all - glad to be feeling better, even if it isn't a 100%!  Still have a fever.  Man, am I EVER going to be glad when this is OVER!!!  

Moonflwr912

DT, so glad you are getting better. You deserve to have a smoother road. Sucks about the accupuncture. maybe after you are done with treatments you can try again. Much love to all.