4th TCH & Very Discouraged!

[kcherub]

Hi, there! I had my #4 round of TCH on Friday the 27th. I have 2 more, and I am seriously doubting that I can make it through them. I don't want to whine, as I know many of you have been through so much more, but I am having some serious issues and I feel like they are being "poo-pooed" by everyone else (out here in the every day life world). OR, does everyone freak out when the chemo really starts to cause problems?

Since before #3, I have been experiencing neuropathy (say, level 7 or 8) in my feet. The big toes feel like ice, and the rest of the foot feels like it does when you drop something on it. Or, like someone is hitting it with a hammer every 2 minutes. Ha--I actually just made myself laugh, but it really does! They suggested a B vitamin, which I am already taking. They suggested a foot massage, which doesn't work. My husband works for a group of neurologists and they said take Vitamin E. They also said something about trying an anti-seizure medication, but I am so sick of putting things in my body! I am so worried that I am going to loose the feeling in both my feet permanently--a friend's Dad had this happen from chemo and it freaks me out. I have a child, and own a boutique. I cannot be unable to move easily.

I also have a "cold" spot on the front of my forehead. I have actually had this since after #1, and today it finally just dawned on me that I haven't asked about that. I thought it was a dermatology issue (my forehead has been breaking out like crazy for about 6 months). Did anyone have something like this? Now I am thinking it's a neuropathy issue. Sorry if that isn't the correct word if we aren't talking about the hands or feet.

My mouth GUNK seems to be lingering this time. Usually by today, my mouth is back to normal, but it still tastes like sewer. My teeth hurt, they feel cold, too. This might be from all the brushing with flouride, so I am going to hold off on that toothpaste for a few days.

I didn't have "nausea" in the true sense of the word this or any other time, but a constant queasy stomach. Maybe this was from the gross taste in my mouth?

I have been raging like a crazy person, and I think my 7-year old believes I am possessed. My Mother actually made me let her take him to her house for a few days. She said it was so that I could rest, but I really think she thought I might damage him for life. Ugh!!!

I can't control my thoughts, and if I take anymore Ativan to calm down, they will commit me for being addicted.

#4 seems to suck for everyone. Does it get worse? Is there some sort of cellular damage that happens after #4?!?

And...I no longer have lovely thick eyelashes. They are falling out when I am not paying attention. :)

Okay, that is enough. I just want someone to tell me that this is as bad as it gets. I actually want my onc. to tell me that 4 is a great number, and I don't have to do it again. If he did, I would never visit the chemo room again. I think my problem is that being Stage 1, I have had this thinking that the cancer won't kill me, and it's no big deal.

BTW, my husband is great, but since 1, 2, and 3 weren't too bad, he can't really relate to how bad #4 is making ME feel.

Sorry if this doesn't make any sense. Like I said, I can't think straight. Even if I don't get a reply, I feel better just pounding this out!

Krista
Diagnosed 3/29/2007
Stage 1, 1.4 cm, lumpectomy, no nodes (SNB), no vascular, clear margins
ER/PR +90%, HER2+
TCH 6 rounds 5/25/2007-9/07/2007
Herceptin until 5/2008
Rads undecided, Tamoxifen undecided

[Linda]

Krista:
You're just in the midst of treatment, and yes, it sucks, and yes, it makes you crazy and yes, it makes you sick! But...you're getting through it. And you have a great prognosis. Once you finish the hard stuff, herceptin is easy and you should never have to visit this again. So, just remember, you can do ANYTHING once. Just think of it as some weird form of trial or experience, that does have an end. And if you get addicted to Ativan, you'll wean off it, when you're ending treatment, and after a month or two, you'll be un addicted.
You can do this. You HAVE to do it. We've all done it, and most of us are still here and fine and recovered.
love
linda
(stage 3a, all the usual tx, NED at almost 2 1/2 years)

[tousled1]

Krista,

You'll make it through the treatments! You are more than half way finished -- only 2 to go. I know that I have different side effects with each treatment so I never know how I'm going to feel. The neuropathy can be very painful. I've found that Lyrica (prescription) really has helped so you might want to ask your oncologist for it. As for the mouth -- my dentist recommended Biotent toothpaste and mouthwash. I've been using it with good results. Best of all you can purchase it at any drug store or super market. Hang in there, it's as bad as it's going to get. It does get better and you can now see the light at the end of the tunnel.

[DonnaD]

Krista
First, I am sorry you are having such problems. BC sucks! Believe me I understand (I was hospitalized for 5 days w/intestinal issues and dehydration when on Taxol/Herceptin). I only wish I could tell you this is as bad as it gets, but we just don't know. You can vent here anytime.

Here are some things that helped me when on Taxol/Herceptin. My onc reduced my last Taxol by 25% and the neuropathy went away very quickly. Mouth issues for me were helped by using a mouthwash like Biotene. There are many medications for your stomach. I took compazine. You many have to ask for something else if you are taking something and it is not working. I to was and still am on Ativan. I take just a small amount to help me sleep now. I do not worry about becoming addicted I need my sleep!

I am hear to cheer you on. You have a wonderful little seven year old boy. What is your son's name? So happy your Mom is close to help you with him and allow you to rest. You are fighting hard and I hope you can continue to fight. I wanted to do everything I could so I had no regrets later. No one can understand what you are feeling unless they have gone through chemo. That is why this site is so important to many. All here understand, sympathize, pray for you and encourage. We are a family.

Now the good news. You are 2/3 of the way through treatment! It does get better. My hair, eyelashes and brows are returning and the wig is gone!!! I have had no problems once on Herceptin alone. I go in for treatment and 30 minutes later I am finished. I am hoping for the same for you. I will say a special prayer for you tonight for strength and wisdom. If you ever need to "talk" send me a private message.

Good night "sister"
Donna

[DonnaD]

Me again. Please read Weezie's latest post on medications for neuropathy. See what help is here on line!!!

Donna

[harrie]

Kcherub,
I also had TCH (taxotere, carbo, herc) and I felt just like you after #4. BUT I was encouraged by Jean that it does not get progressively worse after #4....so HANG IN THERE!! I am also stage I and I knew chemo was an elective option and I was wondering after #4 if I really wanted to continue on with 5 and 6. For me the bad side effects peaked at #4. I AM SO GLAD THAT I DID IT ALL> Really....
My side effects lasted a good week and then they would lift like how the fog lifts to clearer skies.

The "nausea" I experience during all 6 txs was excessive salivation. I could find NOTHING to solve that problem so I just dealt with it. Was a hassle, but a minor inconvenience to the benefits I was telling myself I was getting and minor compared to the side effects others experienced.

Most foods tasted really bad, but remember,...it is temporary.

Food tastes perfectly normal now, my energy level is back up, my blood counts are good, my wt is fine.....and you will be just fine too. I just know it.

Do what you need to do, go with the flow, and REMEMBER, this is all a temporary inconvenience.

BTW, are you taking a steroid such as decadron for the neuopathy?

Your mouth: it is not the fluoride, it is the ingredient called sodium laurel sulfate which is found in most toothpastes. It is the foaming agent and it can also make chemo pt's mouths uncomfortable. Go for either Biotene or Rembrandt (for canker sore sufferers)...OR if they taste bad to you too, just use some Crest Pro Health mouthrinse on your toothbrush instead of toothpaste. I ended up doing that. The toothpaste is not all that impt for good cleaning. The mechanics of the brushing is more impt.

Please email me if I can be of any help whatsoever.
Harrie (maryanne)

[Chelee]

Krista, I did six cycles of TCH. I must say the first 3 trts of TCH were my worse! Always day 3 through 7 was the worse after each trt. But seriously...the 4th trt till my final was NOT as bad as the first ones. I don't know if the body gets use to it or what...but on my 4th cycle of TCH I waited till about day five and called my chemo nurse to ask her if there was a mistake in the dose because I didn't feel as bad this time? I didn't feel great but I had expected to feel so much worse and didn't. She checked my chart and said everything was the same. I'm not saying I felt perfectly fine...but it just didn't hit me as hard as when I first started. I thought they cut my dose in half. That darned sewer mouth as you call it stayed with me throughout the entire treatment. YUCK! I lost 32 pounds on TCH...great diet! (NOT!)

I did have the neuropathy in my finger tips, toes and bottoms of my feet. But slowly after my last cycle of chemo it slowly but surely got better and I can now tell you its completely gone. Feet and hands feel normal again. :) I did get discolored fingernails and toenails towards the end of cycle 5 or 6? It surprised me showing up that late in trt. But the nails grew back out and thats gone too. I will admit to alot of bone and body aches and pains. Seems I always hurt...but I just kept counting off each trt as I got through each one. I was extremely tired & fatigued & couldn't wait to be done with it like you want to be. But just think Krista...you ONLY have two more to go. I really believe you can get through this as you've gotten through the worse in my opinion. I know we are all different and are bodies react differently...but I really don't think you will find the last two that much worse. I got to where I knew what to expect and it actually seemed easier towards the end. You are so close to being done you will start seeing that light at the end of the tunnel. So hang on and finish...you will be glad you did. When you get to just doing herceptin it will be a piece of cake in comparison. Let me know if you have any questions I left out. But seriously...I don't think 5 and 6 will be that much worse for you. Hang in there.

Sending you positive thoughts to get through this. You CAN do this. :)

Chelee

[Melinda]

I wanted to let you know that I went thru this as well. Everyone goes thru differently ... I had the worst round at #3 so you can imagine how I dreaded 4,5,6 but they did get better and did not hit as hard as #3. The effects are cumulative and by the time you get to 3 or 4 you have maxed out. My most disappointing round was #4 not realizing that my platelets would drop they postponed my treatment for 3 days and I was mortified because I wanted this all to end last ASAP! The boys (platelets) played their games and I was postponed 5 days the next time but they did a great job in bouncing back to acceptable levels each time
I used PreventaDent5000 by Colgate and thank goodness it worked cause I hated the taste of the Biotene. Steroids were my biggest issue.... lack of sleep and as like you used Ativan to my advantage. I bought stock in Imodium. ANd eating was a PIA because I wanted everything that would cause me to gain weight... 17 pounds! Nothing tated good but fattening foods of course! Looking back it was a doable treatment and I know you can get thru this just like the rest of us. Herceptin seems even easier now... I dont even get the crusties like I did when I was taking it with the chemo. Yeah... the brows and lashes disappeared overnight AFTER I stopped the chemo, but are slowly growing back , might be better if they were not white or maybe light gray right now, I'd see them better. As I have mentioned in another post I have a tennis ball head right about now and no its not the neon yellow color!l
Just remember we are all here for you, wheether its to vent or questions...
Keep the faith
Melinda

[harrie]

Krista,...I know it sucks....but you can do it! It has only been yesterday when we have all been right there where you are. Someday...SOON...you will look back and it will all be a nice ride downhill and all those nasty side effects will be blown away in dust!
Hang in there, just do what you need to do, and very soon you will be looking back like we are and saying "I DID IT! WAS TOUGH, BUT I DID IT AND I'M GLAD CHOSE TO DO IT! CASE CLOSED!!!!"
Hugs....
Maryanne

[harrie]

Did you enjoy your birthday? I bet you did!!!
Maryanne

PS...I LOVE your picture!!!

[MJo]

I was also stage 1. I didn't take THC but I took AC. I felt like I was having what is called a nervous breakdown. Like you, I felt I couldn't control my thoughts -- that something else was controlling them. I've done some volunteer work with psychiatric patients, and I think I understand a bit more now how awful brain disorders are. A few weeks after I finished AC I was back to normal (my normal that is) and it was a blessed relief. Before BC I wouldn't even take aspririn. THe Onc prescribed Lexapro and Xanax. I took the Lexapro but tried not to take much xanax. If I had to do it over again (and I trust I never will) I would take the Xanax. It's the chemicals, not you. I remember my family looked scared (I don't have husband or kids--I mean brothers and sisters in law). I must have been a mess. Fortunately, I didn't have any mouth trouble. I rinsed my mouth a couple of times a day with baking soda. Someone told me not to think too much about BC or I'd go crazy. I told them I'd already had a breakdown during AC and I'd come through it, so I wasn't worried. If you are not getting nauseaus, feverish etc., that's good. Take one more treatment and then take the last one if you can. One THC at a time. You'll make it.

[kcherub]

Thank you all so very much for the wonderful words and encouragement! I would not wish this "journey" on anyone, and I am so thankful that this board exists! I have read on several other boards, but didn't feel that posting there would offer much feedback--and this thing requires so much information from others and help along the way!

I had my Day 10 (although it is really Day 12), and I brought up all of my concerns with the PA. She was really helpful, and I actually asked me if I thought I could get through more. I think she was really asking, which made me feel better. Although I did not tell her I definitively could not, we left it at me being there on August 17 for #5. I have an ECHO the day before, but I am not too nervous about that.

We are going to change the steriod protocol, which has been different with every treatment. I really think that the steriods are a HUGE part of my not dealing with this very well at this point. If my mind was sound, I could rationalize everything else!

Once again, thanks so much. I am going to reply privately to those of you who asked me specific questions.

Take care,

[tousled1]

Krista,

sometimes the premeds especially the steroids are worse than the treatment it self. You'll make it through the treatments and then you'll look back at it as a vague memory. It's amazing how much our bodies can go through. Hang in there, you're almost at the finish line. Just take it one day at a time.

[danceswithrain]

Krista,
If I could jump through this screen and give you a big hug I would. I so can relate to what you are saying. I just finished my last TCH treatment (#6)today. I GOT there!!!
Only three weeks ago #5 I laid in bed and just sobbed in my husbands arms saying I didn't think I could make it to through #6. The severity of my side effects have varied with each treatment. #1 I was hospitalized twice, # 2 alittle better (they reduced the dose) I was in Arizona then. I moved back home to alaska and a new ocologist who totally screwed me up. I was hospitalized again with #3 but I think alot was the Dr. So again a new doctor and #4 not so bad.
#5 the one three weeks ago I literally could not get outta bed for 2 days and then slowly regained my footing. If there has been a side effect I think I've had it.
As I just got my last today so who knows what the day will bring these next week or so.
I hope this will help. B vits are good but the best advice I got from my doctor on the neuropathy (I also had hand and foot syndrome where my skin peeled off) was B6 150mg every day that is important in that it helped me alot. I was already on Neurotin before the cancer because of fibromyalgia and a sleeping problem but it also works for neuropathy.
Have they ever considered reducing your dose? Neuropathy is one of the reasons my Arizona Doctor says qualifies for a dose reduction. But they reduce mine because my intestines were trying to block after the first dose and because of the hand an foot. My doctor there is very good and I have alot of respect for his knowledge, this has been reinforced after seeing two other oncologists. While I was afraid to reduce the dose he explained to me that the dosages are only guidelines and you have to take each patient individually. While he didn't reduce it alot it made a difference. So that is something to consider.
Crazy????? Oh yeah. I chocked some of it up to the steroids. But this is also a emotional roller coaster on it's own. Trying to handle a seven year old in the process...well someone should tie a red warrior headband around your head. Your a champ!!! Take help where you can get it. That's been probly the hardest thing for me to do when I'm down in the trenches of this battle. I've always been a independent person.
Brushing with baking soda probly help my mouth alot. Brushing and sometimes when it was real bad a gargled with it too.
I take AmbienCR which combined with the Neurotin has helped me sleep. I can usually get at least 4 hours. The sweats from being throw head first into menopause are so bad sometimes every 10 minutes it's usually what keeps me awake or wakes me up also I developed this restless leg thing that keeps me from going to sleep. So I'm tickled with 4 hours. It's almost impossible for me to sleep on the steroids. so I only take them the day b4 and 2 days after now.
I won't say "you only have two to go" because #5 is only too fresh in my mind. Everyone kept telling me that "only one more to go" when I broke down. I felt like yelling at them "YOU HAVE NO CLUE!" (we're crazy remember LOL) At the point 1 more felt forever and more than I could think about.
It helped me to think in inches instead of miles at that point. For about 5 days I really had to lower my expectations of myself. Think of minor (or minute) goals for each day and as you accomplish them hug yourself for me. Forget guilt!!!! It is obvious from your post you are a incredible lady please for these next few weeks allow yourself a little break and delegate to others. you don't have much further to go on the TCH journey. Get a body massage, get your hair done, stay in bed one whole day and watch your favorite movies.
Your right behind me in treatment and we'll celebrate together!
Please also have your Dr. consider a reduced dose if your neuropathy doesn't ease abit.
As is obvious from all the posts are hearts are with you!
HUGS AND MORE HUGS
VICKI

[dhealey]

Krista,
I feel for you, but keep going if you can. When I took A/C it was the worst for me. After the 4th treatment I told my husband I wasn't doing this anymore. It was a good thing that was my last dose. I then took 4 rounds of taxol. I too, had alot of neuropathy in my feet and hands. I would drop alot of things ( very inconvenient since I work as a nurse.) I continued to keep working. This helped keep my mind focused on other things. I lost all my eyelashes, nails got some kind of fungus that went away after treatment and skin peeled very badly. I am happy to say that all these side effects went away gradually. Even the neuropathy. Please hang in there this will all pass. Keeping you in my thoughts.
Debbie in North Carolina

[Mary Anne in TX]

Hi Krista!
You won't believe what kept me going during the worst! My husband looked at me in the middle of the night, sitting in the bathroom in unbelieveable pain and he said to me, "You have to stop this. It's just too awful. It's not worth it." Well, that did it! I didn't feel one bit better, but it made me so mad that he would even think that I would quit, that I found some mysterious reserve of fight to carry me through! When things got tough from then on, I just remembered that awful night and the way inwhich I learned how very much I wanted to live - wanted it so bad that I was willing to feel worse than dying to get better!
You made it this far! You're some kinda superwoman and you can do the rest, somehow you just can!
God Bless and hugs galore,
mary anne

[Erin]

Krista,

I am soooo sorry you are having such a terrible time of it! My 4th was by far the worst, but possibly because I was so used to the bad feelings and had finally put together some interventions that worked for me. I cannot add much to what everyone else has said, except for the mood swings and "raging". I would talk to your onc, and perhaps a psychiatrist (not because you are crazy, but because I think they have more experience with the meds) about getting you something to help you relax. There is no point in suffering. This is a temporary situation that will end. You need help with dealing with these issues now, and you should not take no for an answer. I also think if you have good people around you that are willing to help with your son, you ought to take advantage of that. Our kids suffer from our bc too. Sometimes it can be a blessing for them to get some "time off".

Chemo is awful, and if you decide to do only four treatments, so be it. But, give it your best shot, I didn't think I could make it past 4 either, but I did it. Best of luck dear!

[Stephanie B.]

I am so sorry you are hurting so badly. Have you tried Glucosimine Condroitun (Sp??). Someone suggested I tried that and it really helped with the numbness in the fingers and toes. I do have one toe that never completely recovered from my first round of Taxol (finished 4/06) and now seems worse with this round (Bi-weekly since 02/07). I do hurt between treatments, but it does seem less painful with bi-weekly treatments than it did with every 3 weeks. I do know that my taste buds are off for about a week and then go back to normal. I did get mouth sores a couple of months ago and they gave me something to swish around in my mouth - although I'm not sure the taste was worth it:).

I understand about your kids. My son would roll his eyes everytime I got sick on A/C. He was five at the time and now seven. He is a great support though. Kids are a lot tougher than we give them credit for.

Hang in there. You will get back to almost normal soon.

Stephanie B.

[danceswithrain]

me again hope today is better for you. here is some info on dose reduction re: TCH if you have severe neuopathy.I've included the link if you want to read the whole article but you might want to bring this info to your Dr. to see if a dose reduction is possible.

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17200359&query_hl=27&itool=pubmed_docsum

Dosage Adjustments During Treatment
Breast Cancer
Patients who are dosed initially at 100 mg/m<SUP>2</SUP> and who experience either febrile (http://www.medterms.com/script/main/art.asp?articlekey=3398) neutropenia (http://www.medterms.com/script/main/art.asp?articlekey=4560), neutrophils < 500 cells/mm<SUP>3</SUP> for more than 1 week, or severe or cumulative cutaneous (http://www.medterms.com/script/main/art.asp?articlekey=2885) reactions during TAXOTERE therapy (http://www.medterms.com/script/main/art.asp?articlekey=10897) should have the dosage adjusted from 100 mg/m<SUP>2</SUP> to 75 mg/m<SUP>2</SUP>. If the patient continues to experience these reactions, the dosage should either be decreased from 75 mg/m<SUP>2</SUP> to 55 mg/m<SUP>2</SUP> or the treatment should be discontinued. Conversely, patients who are dosed initially at 60 mg/m<SUP>2</SUP> and who do not experience febrile neutropenia, neutrophils <500 cells/mm<SUP>3</SUP> for more than 1 week, severe or cumulative cutaneous reactions, or severe peripheral neuropathy (http://www.medterms.com/script/main/art.asp?articlekey=4838) during TAXOTERE therapymay tolerate higher doses. Patients who develop ≥ grade 3 peripheral (http://www.medterms.com/script/main/art.asp?articlekey=8262) neuropathy (http://www.medterms.com/script/main/art.asp?articlekey=11749) should have TAXOTERE treatment discontinued entirely.

Hugs!!!
Vicki

[Barbara]

Krista:

I am sorry about how ill you feel and the problems you are experiencing. I too was very ill with A/C and Taxol. I was admitted to the hospital after my first taxol treatment as my vitals were not stable and they thought I had developed a blood infection. My feet and fingers hurt with Taxol. Actually after my first A/C treatment, I had a bad headache and couldn't sleep so I asked my oncoloigst to reduce my steriod which he did by 2/3s! That made my headache and sleep problems go away. The pain in my fingers and feet went away about three weeks after finishing Taxol. And food finally tasted OK about three weeks after finishing and I gained back seven of the twenty-two pounds I lost in sixteen weeks. I did not want my dose of Taxol decreased as I was afraid it would be less effective but I was Stage 2B with lymph node involvement and not Stage 1.

Barb

[janet11]

So sorry it's hitting you so hard. I didn't have bad neuropathy, but the 'sewer mouth' was horrible. By the 6th cycle, even water (which is my 'drink of choice') tasted bad for a few days.

But it DID go away after treatment. I was thinking NOTHING would taste good again. And, don't laugh, but I was actually DREAMING of food. I dreamt of salads (vinegar was one of the first things that I couldn't tolerate on TCH), of chocolate, of pizza (by cycle 4, tomato products were disgusting), of chocolate...

Best of luck!!!

Janet