I am terrified of chemotherapy

PearlGirl

Going through all this, terrified of the chemo and mortified by the thought of actually having cancer, I started freaking out this week about the possibility of getting a different form of BC in the future. Am being treated for ER,PR negative, Her2+. Now find out that I still can end up with ER,PR positive BC in the future. Nothing is guaranteed. And with more 'targeted' therapy it only covers the cancer of the day. UGH! Until now all I was worried about was mets...huh, did you catch that?...I said All I was worried about. I'm worried about everything, Will I ever stop waiting for that other shoe to drop.  Right now after every chemo round, I call that first week my 'shoe dropping days'.  I swear that after my current schedule of treatments ends in June 2011 I'm going to write a book called My Shoe Dropping Life. In the words of Rosanne Rosannadana..."It's always something"

Texas357

Bon, just seeing your thread. I too had every side effect in the book with chemo, and I absolutely hated the steroids. I had the rash so severe that it pulled my eyelids wide open and my hands peeled. My tear ducts closed shut. My mouth was so dry it hurt to eat, and I could barely chew because the food stuck to my teeth and gums.

I finished chemo more than a year ago. Yes, I've still got a few lingering side effects such as dry skin/hair, but I'm so happy to be able to function -- and to recognize myself in the mirror -- that the rest pales in comparison.

It will get better!!!!

PearlGirl

Texas357...I appreciate your comments.I try not to obsess and to stay positive but this is just a bad day. I got a message earlier today that my only blood-related cousin died last evening after a terrible 11 year battle with systemic lupus. She went through sheer hell for all those years, taking methotrexate and prednisone to help the lupus, but it did a number on the rest of her. In the end she had so much prednisone on board that she was suffering chemically induced psychosis. I hate drugs and hate that she died, but hate that she suffered more.

And I took 50mg of benadryl nearly 3 hrs ago and still didn't get any sleep due to all the steroids for the crappy Taxotere rash. Will try another 50mg in an hour or so.

Thanks, Texas357, for letting me know that it always won't feel this way. The steroids have me off balance and I needed confirmation that the light at the end of the tunnel isn't always a train.

DiDel

Hey BON!! I too had a rash after first treatment. It felt like sun poisoning, itchy blistery blah! Onc wasn't sure if it was an allergic reaction or a random skin virus/infection. I was super careful about touching things like the nasty copiers at work that 500 people and their snotty drippy nose kids hands touched then touching my face or chest..things I never thought about until the icky itchy rash. After that I wore gloves around the office and in public places (like grocery store). You learn real quick how amazing your healthy body was fighting all sorts of bacteria and infections a thousand times a day probably...lol.

I hate cancer too!! I've been worried about reccurence like everyone here with every ache and pain I worry. I had my first mammo and 3month check up next week. Mammo was clear so that has given me TREMENDOUS relief...I hope that by the time I hit my cancerversary and have this TE exchanged for a nice soft yippee squishy I will start to take control over my life again. I miss the old me. Sounds like you're almost there with the Taxotere and Cytoxan. YEAH! I don't know about herceptin but I know you will be happy to be done with TC...I was!! Keep your head down and keep steam rollin' ahead...you're getting there!!!

Good luck with the rest of treatment...look forward to reading your posts...positive vibes coming your way!!!

Diane

DiDel

BTW when I have trouble sleeping I take 1/2 Ativan at night...I have also been taking Melatonin which has really helped!

Di

sschmidt

Hi Bon...lack of sleep is a nightmare all on it's own.  My onc told me  that sleep was so important during chemo that I had to take sleep meds.  Please consider it.  I know steroids are horrible for sleep.

Shirley

Scrabblelady

BON::  I thoroughly sympathize with you.  I have the same type of cancer as you.  I had no tumor, but an area of invasion- 1.2mm. I had aLMX and will start chemo on Aug 23.   My onc wants to do 4 cycles of Adriamycin and Cytoxan, then 12 weekly  treatments of Taxol & Herceptin, then Herceptin every three weeks for 9 months.  

  I have been terrified of the heart damage that can happen with the adriamycin.  I spent weeks researching, hoping to find a regimen with better results, or info minimizing the risk o heart damage.  I even researched if CoQ10 supplementts can protect the heart. Finally, two days ago, I  accepted my fate and decided to put my faith in my oncologist. .  The AC-TH had the best results as I am not in a high risk  group for heart damage, I will keep a positive attitude.

  So as confidant as I sound now, I know that come Aug 22nd when we drive back to Houston for treatment, I will be nervous and grumpy.   I have no great advice for you but to stay calm and know that all of us are here for you.

LOVETOSAIL:  Thanks for the good tips.  I need all the advice I can get. 

Claire_in_Seattle

Scrabblelady.....did you know that exercise appears to be helpful with Adriamycin.  I exercised throughout AC, and I think I am just fine.  Still w/i the year's time, and I am doing major endurance cycling events.

I had no problems sleeping with either one of the chemo protocols.  Again, used exercise to get me tired, and I think all the fresh air helped.

I did six rounds of AC and I suspect I am older than you are.

I suspect you will be just fine.  Dragging yes, but just fine.  (On my worst AC cycle, I did a group ride of about 15 miles with a major PIE stop, and then a cycle up Phinney Ridge.  I had to have everyone stop so I could catch my breath and oxygenate myself.  Then I kept going and made it up.  They applauded me.  Four weeks later, when on Taxol, I did a cycling event.  True I walked the hills, but I did the 22 mile short course of the Chilly Hilly.  So it can be done.) - Claire

Scrabblelady

Claire in Seattle:   Hmm, maybe I should take up biking again.  I stopped 10 years ago when I had eye problems which caused a little bit of double vision.  Afterwards I never felt comfortable in traffic.  But I could try biking around the neighborhood ( It's a 4 mile lap).  My other problem is that I was supposed to get my bunion fixed in June, but then BC appeared on the scene.  So I can't walk much more than 1/2 mile before I start limping. ( BTW, I'm 58 yrs. young).  I had to give up my aerobcs class because of the bunion, so I started with the elliptical and the rowing machines.  I'm not sure if I want to use the gym while I'm on chemo and blood counts are low.   Guess I'll have to wait and see how low the counts go.

Claire_in_Seattle

Dear Scrabblelady,

I have contact lenses and never had good bifocal vision, so struggle that way a bit, particularly on fast downhills.  You should have seen me when I was learning to wear my contact lenses!!!!

One thing that really helps in traffic is a good mirror!  Just like with cars.  It also helps when cycling with a group.

Is there any way to pad your walking shoes so that your bunion hurts less?  Or wear hiking boots that puts more force on your ankles vs your feet?

If they give you neupogen or Neulasta with chemo, low blood counts may not be a problem.  The Neulasta shots were no fun, but I didn't worry about infection.  I got out there and walked or cycled every single day.  I did weights and crunches so my upper body stayed toned too.  I did these at home.

I have also used cycling as a way to build up my body post treatment.

There is no reason why you shouldn't aspire to be fit.....lots of the people I did a group ride with yesterday are retired.  One even had heart surgery plus a kidney transplant and he is out there.  The oldest person doing the Seattle-to-Portland Bicycle Classic was 87!!!!

I am planning on a 70 mile event next Sunday.  Then a lot of swimming the following weekend when I visit a friend in the NYC area.  I am a bit older than you are.  As a matter of fact, when I was doing chemo, I often had the most toned body of anyone there.  I was getting more exercise than some of the infusion nurses, and I was the one getting my butt kicked with AC.

That's what exercise can do.  Good luck. - Claire

calamtykel

Bon I understand about "other" bc.  But remember that you'll be watched much more closely  now, and if - IF IF IF you do end up with an ERPR+ her- then they will most likely catch it early and you may just need to get it removed.  I have had two friends whose bc got caught early, they just removed the lump and no chemo needed. 

However, I understand your fears.  I haven't eaten much in days, as I'm waiting for my scan results.  I'm a wreck.  I cried much of last week.  I so so so so afraid it's somewhere else.  I'm panicked about having had a ct scan and the amounts of radiation involved.  Have I just set myself up for a different cancer in the future with all that radiation??  I have come to the conclusion that it's not dying that I'm afraid of, as a Christian, I face that with confidence; however it's leaving behind my loved ones who need me.  AND just DEALING with the news and the panic all over again.  I feel like I can't bear it some days.  I hate cancer too - I hate that you never know how "gone" it is - that there aren't guarantees with the treatment - that the treatment is so aggressive, harsh and disabling...etc.   Hate it hate it!

Eileen101

Scrabblelady: I just had my 2nd A/C and the heart is doing fine. I was more active pre-chemo, but I still take daily walks. Except the first few days after chemo where I marathon sleep.

billmomson

Jayne had very good advice! I hope it is helping you, Bon!
My only comment is on the hair loss. That really bothered me. Didn't like it one bit. Thank God, I found a woman who's company meets all the oncology patients needs! She helped me find a wig so similar to what my hair looked like prior to losing it that people didn't even realize I had a wig! I started losing it 15 days after the fist A/C treatment. She told me to come back and she'd shave my head-I was all for that-Cancer was not going to get the best of me!! I was going to be in control. Well so much for control--the day I was going for my "shave" I was a mess. I worked till late in the day and just before I was leaving a good friend sent me the most beautiful floral arrangement to cheer me up! Of course that made me cry too! When I got there to get the big shave - my sister and I walked in and of course-I was still crying-she says.."what are you crying about? Only 3 people have cried on me - you are not going to be the 4th!!" Well that set the tone-as she was cutting my hair prior to the shaving...she say's I'm going to give you a mohawk...I said oh...no youre not....well yes she did...It was hysterical! After the 1st 5 minutes, we were all joking and laughing...These are the silly things that help get you thru it.

You will get thru it-You'll be tougher and stronger! You didn't let it beat you!!

Wishing you good health and lots of love!!

billmomson

Jayne had very good advice! I hope it is helping you, Bon!
My only comment is on the hair loss. That really bothered me. Didn't like it one bit. Thank God, I found a woman who's company meets all the oncology patients needs! She helped me find a wig so similar to what my hair looked like prior to losing it that people didn't even realize I had a wig! I started losing it 15 days after the fist A/C treatment. She told me to come back and she'd shave my head-I was all for that-Cancer was not going to get the best of me!! I was going to be in control. Well so much for control--the day I was going for my "shave" I was a mess. I worked till late in the day and just before I was leaving a good friend sent me the most beautiful floral arrangement to cheer me up! Of course that made me cry too! When I got there to get the big shave - my sister and I walked in and of course-I was still crying-she says.."what are you crying about? Only 3 people have cried on me - you are not going to be the 4th!!" Well that set the tone-as she was cutting my hair prior to the shaving...she say's I'm going to give you a mohawk...I said oh...no youre not....well yes she did...It was hysterical! After the 1st 5 minutes, we were all joking and laughing...These are the silly things that help get you thru it.

You will get thru it-You'll be tougher and stronger! You didn't let it beat you!!

Wishing you good health and lots of love!!

PearlGirl

It's one week post tx and I'm 'zombiesque'.  The heavy steroids (pre treat tx for rash and then what is normally given with each tx) are finally moving out of my system and I sincerely hope this mental numbness goes away soon. I find myself not sleeping or just getting a few hours now each night...and lack of sleep is just a killer when you feel so debilitated already.

I know the steroids are to blame for most of my issues...yesterday a friend looked at me and mused how my face was puffy and I looked like I was on steroids. DUH! 

And, more emotional than physical is that I'm trying to deal with the feeling of abandonment by people who think I've made it through chemo this far so I must be OK.  I still get incredible emtional support from friends at a distance. The cards, calls, gifts, keep coming. But it's the locals who have backed off. I know that I ddin't overburden them with requests...I honestly haven't asked anyone to go out of their way for anything except my Dad. The help I've gotten locally has been volunteered and mostly consisted of rides.

Crap...I don't want any emotional stuff to work it's way into this stuff. I have enough to deal with physically and just can't add this emotional junk layer to the burden. This is probably the steroids, too. All will be well soon, right?

Anonymous

Bon - Just read your 7/21 post on what you have learned on Chemo so far - Well put Bon!  I am backtracking somewhat and wish I had found this site last January when I started Chemo.  At first diagnosis I was so overwhelmed with EVERYTHING.  Suddenly you have to drop everything and educate first yourself, then your family and life changes so drastically as we all well know.  It would have been very helpful to me if I had found this site at that time but better late than never.  Like you, I have a list going of suggestions to make to anyone facing or going through Chemo and many are the same as you listed.  My Chemo is finished and now I am getting Herceptin every 3 weeks until the end of the year and there seem to be no real SE from it.  When going through the Chemo it just seemed as if time barely moved and now that it is over I realize it actually went pretty fast. So, anyone in the midst of Chemo, remember that although time seems to move at a snail's pace, it will be over soon and you will look back on that time as actually having passed quickly. You can look forward to more fun problems like dealing with unruly hair growing back in a foreign color and with twists and turns that never existed before.   Bon made a point I had not considered and that is that Chemo is your friend - it is putting you in control, not the cancer.

calamtykel

I'm getting cold feet.  I start on Monday and I just announced to my husband that I'm not going.  I'm getting terrified of all the LONG term effects of chemo - cardio, nerve and such.  I'm scared.  My heart is healthy now - I'd like to keep it that way!
conversely, I don't have much of a choice - risk the mets from breast cancer and die or deal with potential other health problems from the chemo.

I know I dont' really have a "choice" but I'm just so scared of something that I know could seriously damage my body.  That's why I've never smoked, drank or done any kinds of drugs.  I have 8 weeks of ac (4 treatments) and 8 weeks of tax (4 treatments) for a total of 16 weeks.  I guess 18 once they're "out" of my system.

Egads.....

Rosie8

Getting started was hard for me. . . I started in March and have just recently completed my chemo treatments.  For me, what really helped me was to think of the chemo as little army men--very well trained army men, who were going into my blood stream and relentlessly searching out the enemy cancer cells.  Sadly, they occasionally hit civilians, like my stomach, and mouth and hair cells, but I came to accept that this was fine with me, as when I looked at the big picture, the army men were deleting the enemy. . . 

And now that I am done, I have to say that while the chemo rounds were wearing, the recovery has been so wonderful. . . growing hair, eye lashes, and eye brows, and just starting to feel energetic again--really fantastic.  

You can do this, and the time will go by more quickly than you think.  Take the time to rest and take care of yourself, and be sure to get a little walk in every day--this was advice from my nurse that really made a huge difference to my mood.  

One last thing--I found that admitting my fear did a lot to help me conquer it.

Take care. 

PearlGirl

Calamtykel:  You CAN do this! If I have gone this far, you can too.Not every one gets every side effect, known on the forums as SEs. I've only had a few after 3 rounds of Taxotere and Cytoxan. I had a major headache the first go round from not being hydrated enough. So DRINK, DRINK, DRINK starting now and through at least the first 5 days after your tx. I also have had terrible indigestion and acid reflux. Get some meds from your doc for that in advance.

Chemo isn't pretty and it's not for sissies but it can be done. Check out my post from July 21 on page 4 of this same forum and read some things I learned that might help you get through the chemo a bit easier.

Pack yourself a little bag with drinks, snacks, reading material, your knitting or whatever will keep you occupied and just do it. Take tissues in case you get weepy, a note pad and pen for writing down everything they tell you, and a list of questions you might want answered, too.

The biggest thing I need to stress is to GET HYDRATED!  DRINK, DRINK, DRINK!  Water or anything non-alcoholic and with little or no caffeine would be best. And for all your fears and that panic mode of not wanting to get in the car...been there, done that, and went anyway. A woman named Jayne told me early on "You Don't Have to be Brave. You Just Have to Show Up."

survivormom09

I started TCH chemo May 09.  The Herceptin finished up May 10.  As someone said earlier chemo is not for sissies.  We are all strong women that is why we have been given this battle to fight.  And fight we must.  Is there another option???  I did not have severe side effects other than fatigue and hair loss.  I also did 6 weeks of radiation and would redo chemo in a heartbeat before I came anywhere near radiation.  There is a great book called "Just Get Me Through This" that has some great down to earth advice.  The one thing I remember and I did it every time is to make chemo days all about you.  On my long TCH appointment days my mom went with me and sat with me and bought me lunch, my in laws kept my two girls, my husband took me out to dinner.  At every chemo appointment someone drove me so that I did not have to go it alone.  My onc did tell me at one time that they were probably over medicating all of us.  Hey, I will take being overmedicated and being able to live a life that is close to normal than not be medicated and all that that would imply. 

Stay strong! Fight the fight! We are now all a part of an awesome sisterhood of the strongest women out there!

badger

Edited to redact a post with personal information.

Caroljl

Dear Bon, as a cancer victim myself, I would never say BUCKLE UP, and quit crying like a baby to anyone! I know how you feel, this summer of 2010 consumed me with alot of disbelief , and filled with pisstivity that this bad disease violated my body. It was like each day ran into each other with no end. I am recovering from a partial mastectomy and had my first chemo treatment, I must admit, it isn,t like I emagined, with the vomiting and losing your hair right away. I am in my 12th day, just very tired.And yes,I too, do alot of grieving in private. I hope are going to be ok, just one day at a time girl!!

calamtykel

thank you Bon!  Yikes!  The countdown is on.  I'm trying to drink - my wonderful DH took me to a fabulous sushi buffet today (I was careful not to eat any raw - don't want to introduce new bacteria into my body right before treatment) but I was hoping it would make me thirsty.  But I'm NOT.  I have a terrible time drinking because it's very rare that I actually can feel thirsty. 

Gonna go running (yes, in the rain! in a little bit and maybe sweating will help me want to drink.   I'm sure going to TRY!!  

Party begins at 8:15 tomorrow - reality's setting in.  I got my wig yesterday and a very cool hair attachment.  Getting used to wearing my hats already.  Decided when the hair begins to fall, I"m wetting it, flipping it over upside and just cutting away.  Then going and getting buzzed or whatever.  I thought I'd have the courage to do it yesterday with the wig lady but I just didn't.  I don't know why - I'm disappointed in myself.  I've been through so much crap with this BC (not anything that anybody else hasn't been through...but you know...)  that I decided the hair thing was NOT going to bother me.  I thought  I was ready for it; but I guess not quite yet......

 k

PearlGirl

calamtykel

DO DRINK!  Even if you're not thirsty...even it you don't feel like drinking. It's really going to pay off in the end, I, too, have a difficult time drinking liquids. I'm just not one to drink much, never have been. And being a Realtor means I don't drink much at all during the day because I'm out driving around a lot and don't want to stop in grungy public rest rooms. But since my first round of chemo when I didn't drink much at all and no one told me the importance of it, I learned my lesson.  Drink as much as you can for as many days before and after each treatment. Like I said, I don't enjoy it much, but I drink 64 ozs at a minimum during that time and it's helped considerably. 

I'll be thinking of you tomorrow. YOU CAN DO THIS!!!! We are all here for you and will do whatever we can to help get you through each and every treatment.   Bon

calamtykel

Bon: at the end of a quart and counting (in the past couple of hours).  I threw some Chinese cinnamon into the water which makes it spicy and it's easier for me to get down.  I can't tolerate drinking sweet things (except coffee with Stevia) so adding flavored stevia or lemon and water just won't cut it for me.  But I think I've found the trick with the cinnamon!  Went running so now I'm drinking some more!  Gotta pop them veins up! 

PearlGirl

I have been suffering from severe indigestion/GERD for a week now and it's gotten worse instead of better. Am taking Protonix, Pepcid, Tums, Gas-EX. Nothing helps. My MO doesn't offer any advice except to take more OTC meds and get a GI consult. I'm annoyed as all get out that this MO office doesn't have a procedure for handling patients issues. He should have a list of specialists who are ready to take his patients on when the need arises. If I didn't have just one more chemo tx to go I'sd switch MO's right now. I just have absolutely no faith in him at all.

I now have to call around tomorrow to see if any GI doc will take me on a rush basis...I have to get all tests done before next round of chemo starts in 9 days.

Eileen101

Bon, I don't know if this will help you or not, but it did help me. I also had really bad indigestion after the first round of chemo. Another b.c. patient told me to get Slippery Elm from Whole Foods or other natural foods store. I couldn't imagine it would work, but at $9 a bottle, I had nothing to lose really. I swear, it worked magically. About a half-hour after taking, I had no symptoms whatsoever. I hope it helps.

PearlGirl

Madalyn...

I will try Prilosec starting tomorrow. Will take 20mg 2X/day which is the Rx dose. If I get woozy or can't handle that then I'll back off to 20 mg/day, switch is the OTC dosage.

I'm hoping it works. I spoke to someone who said that Protonix is the drug of choice if you're just r=trying to keep GERD from happening but that Prilosec and Prevacid are the ones to use when you need to fight gastritis and get the acid under control.

I'll let you know how it works out. Thanks.  Bon

ibcmets

Bon,  My onc prescribed Prilosec for me and it worked like a charm.  I'm still on it daily after chemo because I was still having the complications if I did not take it.  The scans also revealed a 2cm gall stone but my onc would prefer me not to have surgery as long as the medication can help.

Terri

PearlGirl

OK, ladies, you convinced me. I did take 20mg Prilosec last night and another 20 today. I was nearly symptom free until about an hour ago...so that's progress. I just took a Pepcid and will take Tums in a few minutes. Tomorrow morning I take Prilosec again. I may even take another 20 mg tonight if I still have pain.

I had to work today and then chose to go to see 'Eat, Love, Pray' rather than to spend my day phoning GI offices for an appointment. I'm just over this.I don't want to waste another minute in a docs office if I can avoid it. This is supposed to be the start of my good week between tx.

Changing posture helps and stretching out, bent slightly backwards is the best position for this issue. So I'm getting off the computer and going to relax and think positive thoughts.

Got an email today with loads of one liners...the one that stuck me was "Women will never be equal to men until they can walk down the street with a bald head and a beer gut, and still think they are sexy"  I figure I'm there...I'm bald and proud of it right now. I'll skip the beer gut!