Any May 2009 Chemo Starters?

deb6563

Hi all,

It has been awhile since I have checked in.  The last 4 taxols were boogers.  I had to skip  # 9 due to neuropathy.  By the next week, it was better so I was able to get 80% dosage on #10 and #11.  Then the neuropathy was back.  I was unable to do treatment#12. My fingers and toes were so swollen that I couldn't do anything, including walking, so I spent a week in the recliner. I had a rash all over my arms and legs that itched like crazy. So, it has been almost 4 weeks since my last treatment and my fingers and toes are still sore.  My fingernails are trying to come off, but I keep them trimmed very short so that they can grow out instead of falling off.   I will start radiation on Monday for 33 treatments.   Thanks to everyone who asked about me.  I think about each of you and pray for everyone daily. 

Deb

lassie11

Youch Deb!! that doesn't sound like much fun. I hope things improve for you.

 Today was # 10 of 16 radiation treatments - have no idea why we have such varying numbers of treatments - and it looks like there might, just might, be light at the end of this tunnel.

Now for some hair - oh I'd like to have my hair back!!

taj72

Hello all!  I haven't posted since my initial few posts several months ago, but thought I'd post tonight because I'm having a very tough time right now.  My mom was diagnosed with BC (Stage 3B, Triple Neg) in April.  Because of the size of her tumor and chest wall invasion, it was determined that she would do neo-adjuvant chemotherapy to try to shrink the tumor prior to surgery.  She was selected to participate in a clinical trial of a new drug (Sutent) along with weekly chemo which started in May.  She did 12 weekly treatments of Taxol along with daily Sutent for those 12 weeks.  The tumor responded very well to the Taxol and shrunk from the approximate size of a golf ball to  practically undetectable to the touch.  Then about 6 weeks ago my mom began phase 2 of the trial and switched from Taxol and Sutent to weekly Adriomycin and daily, oral tablet dosage Cytoxan.  She was scheduled to do 15 weeks of that, instead at last week’s chemo we learned that her monthly ultrasound showed that she is failing to respond to this chemo and the cancer has restarted growth.  It is now detectable to touch again and approximately the size of a marble.  She has been removed from the clinical trial and we meet with the oncologist tomorrow to see what our next course of treatment is.  Most likely the next step is surgery and then radiation.  However, what is really scaring me is that, based on whatever the onc saw on the MRI he ordered to confirm the ultrasound results, he has now ordered a PT scan which makes me question whether the cancer has spread.  I am very scared for my mom, since she is triple negative, if 12 weeks of Taxol didn’t stop it and Adriomycin and Cytoxan are ineffective, what else is there?  Also, my mom is unlikely to do any more chemo after six months already that haven’t been successful.  Please, any thoughts/advice would be appreciated.  Thank you.

 

P.S. I'm very happy for all of you who have completed your chemo and are on the road to recovery.   

benisse

Thanks to all who congatulated me on finishing. 

Becky - The Komen was very emotional.  It was amazing to stand with the under 1 year survivors and look back at ALL of the survivors waving pink roses in the air while singing and dancing to "We Are Family...I got all my sisters with me!"  There are so many survivors and at times I lose sight of that.  It was the perfect thing to do when just finishing chemo.  Beautiful day.  I have seen the stickers of the ribbon only but not the magnet.  Let you know if I do see it.

A local paper came and took pics of me and my friends at the finish line and interviewed me.  After never going out without a wig for all these months, I'm now going to be in the paper with just a ballcap.  I am so swollen in the face, hands and feet...well everywhere really.  I won't see the pics until they come out in the paper tomorrow.  In a way it will be nice to have them to memorialize all that I've been through.  I have always tried to teach my children that beauty comes from within, so I didn't want to refuse the interview based upon vanity.  Didn't want to teach that lesson.

Mary - I haven't shopped for books yet...will go tomorrow or this weekend I hope.  I'll pass on any good titles to you.

Becky (again) - Yes...I started Tamoxifen yesterday.  I've been having hot flashes during chemopause.  I definitely had more yesterday though.  They're unbelievable.  I just posted on the Bottle o' Tamoxifen thread for the first time after lurking for months.  Good info there if you've never visited it.

Deb - great to hear from you!!!!  Sorry you've had a hard time.  So glad you're finished and hope that rads go really smoothly for you.

Best wishes to all!!!

benisse

Taj - I'll be praying for you and your mom.  Maybe more answers available on the thread - paraphrasing here "not diagnosed with mets but scared".  Sorry you're going through this.  Please let us know what the onc says tomorrow.

taj72

Thank you Benisse.

zuzeee

Taj

So sorry to hear the news. I am also triple neg and it is very scary. Stay strong for your Mum and love and hug her every day.xx

TexasRose

Taj- Your mom is in my prayers.

benisse- Good for you for doing the interview with the ballcap on!! And thanks for the reminder that beauty comes from within. We went to San Antonio for the weekend. I never leave the house without my wig. Saturday morning we went down to have breakfast on the River Walk and I left the wig in the hotel. I was a little nervous and I did get some stares and I did go back up to the room and put the wig on after we ate, but it was nice to be out in just the ballcap. I am so over the wig. Unfortunately it will be around for awhile. Right now, I look like an old man with little hairs sticking up all over the top and a ring of hair from ear to ear. Just lovely, I tell ya!!  

I had some post chemo tests done this week. Labs were good and everything is basically back to a normal range except my lymphs. They are still low making me suspectible to viruses including H1N1. Chest x-ray was negative. No changes on it from the last one. And ECHO and EKG were normal too with no changes from the last ones. I signed the papers for the bisphosphonates trial and will start that next Friday.  

Hope everyone is doing well. Hugs to all.

Mary

taj72

Thanks everyone for your support.  The PT scan is tomorrow and we should have results by Monday when we meet with the onc again.  There were some areas of concern from the MRI results that the cancer might have spread to her rib and sternum?  We'll know for sure next week.  Assuming that it hasn't spread, mom will go to surgery in the next few weeks and then be started on a weekly course of chemo involving different drugs (Abraxane and Avastin) for 12 weeks, followed by radiation.  Anyone had those drugs?  If so, please share your experiences.  I'll keep you all posted how it progresses.  Thanks for your prayers and hugs and I hope that your individual journeys are successful.

TexasRose

Taj- I took Avastin in a clinical trial. If you go to the Help Me Get Through Treatment board, look at the Clinical Trial E5103 thread. That is the Avastin trial. I had 5 of 8 possible treatments before they took me off of it because it caused my blood pressure to rise pretty high. I was put on BP meds and I am still on them. It also caused some proctitis which was pretty painful but my onc prescribed Proctofoam HC and that helped a lot. If I had it do over again though, I would still take the Avastin. It's a powerful drug, but I think it was a benefit to me despite the side effects. Check out that thread. Tons of info there.

My continued prayers for your mom.

Mary 

lassie11

Mary - I think we have the same hair style! the one that still requires a wig, but gives a wee bit of hope. It was discouraging to meet a woman in the waiting room for radiation - she had about 3/4 inch of even hair and had been out of chemo two weeks less than I had. I told my sister that my hair is much like her husband's right now. And mine used to be salt and pepper but so far is all salt. Oh for some hair!

blondie45

taj-keep hanging in there for your mom, i am praying for her.

lassie11-I agree, Oh for some hair! I am 3 weeks after chemo and I still don't have any starting on the top of my head yet, I am getting anxious to say the least.

lassie11

3 weeks blondie45?! I am 10 weeks out and just have about half an inch at the longest parts. If you have any on the sides, you are ahead of me.

Janet22664

Hi All,

DEB:  It's good to hear from you, although I wish you had better news.  I'm sorry that you have been having a rough time.  I will keep you in my prayers. 

TAJ:  So sorry to hear about your mom.  I am also triple negative and my doctors constantly tell me that it's not as big a deal as it's made out to be.  Listen to her doctors, it sounds like they are on top of things.  I never had monthly ultrasounds to monitor my progress. I had one about mid-way though treatments. 

TEXASROSE:  Glad you labs are looking good.  What tests and how often are you getting them?

To everyone else trying to grow hair.......could it be any slower?????   I'm taking zinc, magnesium and using follicle booster shampoo, but it's still too slow if you ask me! 

As for me, I had surgery two weeks ago.  (Bilateral mastectomy with Tram Free flap reconstruction)  I'm still pretty sore, but getting a little stronger everyday.  I have a lot of bruising to deal with and am stuck sleeping on my back for the next few weeks.  I was told it would be a rough recovery and "they" were right!   The pathology report from the surgery came back good...no residual tumor,,,,nothing in the lode....nothing in situ!  All cause for praise!   Now I just have to heal (physically and emotionally). 

Janet

deb6563

I was on Avastin.  Had 8 treatments.  I was asked to do 10 more "maintenance treatments" I said yes, but then information came out that Avastin with or right after A/C had an increase for Congestive Heart Failure.  I have a high family history of heart disease so I backed down from the maintenance treatments.

I, like everyone else, have a ring of hair from ear to ear around the back of my head.  Only fuzz on top.  I do have one lone hair right in front.  Told hubby that I am going to let it grow long so I can do a comb over.  I just wish my hair would start to get thick so it doesn't look like I am going bald instead of growing hair.

I went today for x-rays and will start my radiation on Tuesday.  I am so ready for this to be over.  My toes are getting better and my nails are slowly growing out.  I feel a little better each day.

Hang in there everyone and remember, this time next year we will be celebrating a year post treatment.

Deb

zuzeee

Hi Gals

Hair growth, I was advised to  tale Melatonin to spped hair growht, not sure if it working!! mine is also very slow. Will be months before I ditch the wig.xx

luvtheocean

Hi everyone........just checking in.  Still having insomnia, its 12:30 and my hubby has been asleep since 930.  It's like a catch 22.  I can't sleep at night, have to take a nap during the day, then cant fall asleep at night.  I can't wait for the fatigue thing to be over.  I am on Tamoxifen now and am experiencing some SE's.  Hot flashes, some other stuff that I am not sure are connected but plan to call my ONC tomorrow to see.  Anyone else on Tamox yet?  Seems that I am having water retention in my hands and feet, I have blurry vision, its like I just cant focus.  Then of course there is the whole mood swing depression thing.....not so great rightnow.  I am a real sap at times and as usual my Inner Bitch comes on out whenever she wants to!  But, I still think she is the one that got me through to where I am now so I embrase that!  I am sooooooo ready for the fatigue to be over but it looks like from what I tried to read on one of the Tamox threads that it continues with this drug.  Not good, I go back to work the end of Nov and am going to be working PT thru the holiday's and then starting Jan 1 will be back full time.  Fingers crossed that I can handle all that......we are moving into the house this weekend.....lord help me there are boxes every where the only place i feel relaxed in is our bedroom.....not all bad if ya know what i mean.   I hope everyone is doing ok with radiation.  My hair is coming in nicely, all together, no straggly long ones here and there. Seems to be about the same length everywhere, I don't do the wig or hat unless my head is cold, which still happens.

Seems like our posts on here are fewer and farther between.  I think that is a good thing as we are starting to recover.  Those of you on Rads, hang in there, they don't seem so bad until the end......then I had a lot of pain especially under the radiated breast, I couldn't stand to wear a bra and with Double D's there was quite a bit of skin to skin contact that caused blisters and near 2nd degree burns there.  Not to be a debbie downer or scare anyone but just prepare your self for that one!  You will need some pain meds for it or at least i did so dont be afraid to ask if it gets to be too much!  Just wondering if anyone else is feeling like "will I ever be the same?"  I know this experience has changed me.  Some for the better and some for the worse but I don't want the rest of my life to have interjections of cancer but I'm pretty sure it will for this experience will always have me fearing the recurrance.

Ok, sorry Marvels, I didn't mean to bring anyone down.  I really just wondered if anyone on here is on Tamox....I didn't really like what I read on the tamox thread so I came back to my safe haven of May Marvels to see if anyone here can answer some of my SE issues.

Hugs to All!

Becky

LoriR

Hi Becky

I am right there with you in soooo many ways.  I finished rads on Oct. 5th and started Tamox. on the 19th - so only been on it less than two weeks!  258 weeks to go haha - I have already gained a couple of pounds and feel bloated and have some aching in my hands and feet!  not good! The moods swings are not so bad but oh the hot flashes!  I actually started them when chemo put me into menapause so that is nothing new... 

Debbie - Hope you are doing better - hang in there!!!

 Texas Rose, lassie and Susie  - Hope the hair growth is going well.  I am 14 weeks PFC and it just seems to be going so D*&$ slow!!!!!

Take care all gotta run

lassie11

For people starting or nearing the end of rads - another solution to friction of clothing on sore skin is to put baby powder on. According to the rad tech I met, it eliminates friction and helps keep your skin good.

jabl1252

Becky thanks for the info on the latter part of rads.I just started my boosters today and so far my skin has held up pretty good.Just looks like a sunburn in my armpit area.Hi everyone,it's been awhile since I posted ,but I come here almost everyday to read the posts to stay in touch with you all.I'm  feeling about the same as most of you that are worried about the cancer coming back after the treatment is over. When will we be able to just relax and enjoy our lives that we left when this journey began.I guess we start a new life,hopefully a good and healthy life.Hugs to you all. Julie

TexasRose

Hi everybody,

No Tamox or rads for me, so I'm no help there. I am starting another clinical trial on Friday and will get Zometa once a month for 6 months and then every 3 months for the next 2-1/2 years. I'm hoping for no side effects but I think we all know now that each drug brings about a new set of problems. I'm hoping they are minimal.

I am getting my port taken out tomorrow. It has become so uncomfortable. I am dreading the actual taking out in my BS office with a local, but I will be so glad to see it gone! They would prefer I leave it in for at least 2 more months, but I refused. It's in a horrible place and hurts often.

I have the same sleep issues that Becky does. I can't sleep so I am exhausted in the daytime. Then I take a nap and can't sleep again the next night. If I could just get off this train, maybe I could start sleeping at night again!! I'm going to my PCP on Friday and she always offers me Ambien. I think I'll take her up on it this time now that I'm done with treatment.  

I am 3 weeks PFC today. My emotions are all over the place. One minute I feel so positive and wonderful and the next minute I am scared to death that the cancer is back and everywhere. Adjusting to life after cancer treatment has been much harder than I anticipated. I don't think it really hit me until after I was done with treatment that I had cancer.   

My hair is growing back but it's certainly not even. Some of it is coming in really good (that lovely ring from ear to ear) and some of the top is just starting to sprout. Some of the hairs on top are much longer than other hairs. I'm a long way from losing the wigs and hats, but my hair grows like a weed...or at least it used to. I guess I'll find out if it still does. Most other body hair has completely returned.

I read on another thread here somewhere today something that I am going to adopt as my new mantra. I wish I could remember which thread I read it on so I could give credit where it's due. But somebody's onc told them, "We didn't wait for cancer the first time, and we're not going to waste time waiting for a next time either." I loved that!

Hugs to all! I think of all of you daily and you are all in my prayers.

Mary

AbuelaBoricua

Yesterday was my last radiation.  I wanted to celebrate with you who have given me strength to complete this difficult road. Your words of encouragement and advise have relieved my fears and given me hope that I could get through this and become a better person. For that I will always be very grateful!

My hair growth has been slow but steady. It is mostly grey hair but I knew I had plenty of them before the chemo. The RADs were much easier than chemo but they do burn your skin especially towards the end.

I hope those of you still doing RADS will be done soon, for everyone else remember before we know it we will feel much better.  Lots of HUGS! Diana

TexasRose

Congrats on finishing Diana!!!! WooHoo!!!!!!!!!!!!!!!!!

AbuelaBoricua

Thank you Mary!

luvtheocean

Well, you know how our ONC's always say "if you notice anything different, anything at all, any new side effects, call me"  Well, to that I say a big fat WHATEVER!!!!!!! I called my Onc today about the s/e's....yeah those are normal 'if you are having blurry vision go see an opthamologist'.  I get really tired of being referred to another Dr for a S/E of something to do with this stupid ass disease and the meds that go along with it.  Of course I am thankful that we have the meds that help us beat what we can of this disease but geeeeeeeezzzzzzzzzzz!  Why does my ONC tell me to call her with every little thing if she is only going to tell me to call someone else!

Sorry, another day of ranting......I am really hateful today, which means that tomorrow I will most likely be weepy.

With that, I am going to sign off....no sense in taking the whole May Marvel Ship down with me................

TexasRose

Hugs Becky! It all just sucks doesn't it? Rant here all you want. We are here for you! I have blurred vision too but mine is from the chemo and is getting better.

I posted this on another thread and also wanted to post it here:

~~Ladies, I'm headed to bed very nervous about the port removal. I'm such a weenie. Could I please ask for some prayers and/or positive thoughts? My appt is at 10:30 and DH is going with me to hold my hand. And because my clinical trial nurse told me to take a whole Xanax. I don't drive after that because they really affect me when I take a whole one. I'm sure it will be fine. I keep second guessing myself now and wondering if I'm making the right call to have it removed so soon. But I know I am. It's very uncomfortable and I just want it out. I'll be fine once it's over.

Anyway, good thoughts appreciated. Prayers. Hugs. Whatever you can spare. Thanks so much.

Good night all.  

Mary  

blondie45

Texas Rose, I am sending positive thoughts your way. The port will be out soon and you will be so happy that you had it out. Good luck!

lassie11

Becky - I got the exact opposite advice about the blurry vision. He said it's a side effect, don't go to the eye guy yet. That was when I was still in chemo - now nine weeks out (maybe, I'm losing track) I can tell that my vision is almost back to normal. I can read again and signs on the highway are legible before I have to choose a turnoff - with my same glasses.

Mary - sending you warm wishes for a speedy and event free deporting.

zuzeee

Hi All

Great to hear your news. If you can go to counseling for we are now and have been in acute grief hence our mood swings!!!

A lot of the girls have swithced over to Facebook site. Can someone please post the site here as I have alredy forgotten. Great site with lots of mebers from around the world joining.

Chin up Girls We are going to survive this. Pink hugs. Am off to Australia for the weekend so will check in again when I get back. Have a great weekend all. 

TexasRose

Thank you ladies! I am officially deported! It wasn't entirely pleasant but it's over and the port is gone. That's what matters the most. I am so glad to have it out!!

Becky- I had very blurry vision also but like Leslie, I was told to hold off on having my eyes examined. It seems to be getting better although I still have a hard time seeing the TV from a distance.