June 2011 A/C & T Groupies Unite!

Southamptonmom

Nans, I tried to blame the Herceptin, but my MO said its from the taxanes. My joint pain is subsiding, but I am still dealing with neuropathy. I am almost 8 weeks out from chemo.

cider8

My joint pain has let up, but it's not gone.  I'm on Tamoxifen, too though.  2.75 months PFC now.  One thing I did that I think was extremely helpful was to go to physical therapy.  I went because of loss of range of motion, but kept going to relieve some of the chemo stiffness (and other problems due to hypermobility not addressed for years).  My PT told me that chemo can tighten the connective tissues.  She kept me loose.  I've since read/heard about oncological physical therapists.  This may be an option to explore for some relief.  My onc did not recommend PT specifically; I already knew where to go before surgery/treatment.  So I really didn't talk about PT stuff much with her.  

I still have some very mild neuropathy on the bottom of my feet.  Just in the last couple weeks I've had some nails tear on the edge.  Up until now I had absolutely no nail issues.  My hair is growing in nicely!  So good to have brows and lashes again.  

I have my 3 month followup appt with my onc tomorrow!  I'm eager to hear about my tumor markers.  My numbers went up during chemo and I'm hoping they went down now!!  Oh, I had two dark freckles biopsied last week.  I hope to hear back in the next day or two.  I went to my derm for an acne checkup (though my acne has been almost nil since chemo!) and asked for a full body check.  The two freckles were just darker and I'm not worried, but just ready to know.

Next week is my stage 2 for DIEP!  I can hardly wait for the shape up and to get my stinking port out.  The port does not bother me anymore.  I'm almost sad to have it go, because then I go back to my arm being sticked.   

LuvRVing

Paula - good luck with your Stage 2 surgery.  I hope you get to see a little of New Orleans, we've been there 3 times for New Year's Eve and it's one of my favorites.  Love Bourbon St!!!  Glad your joint pain is easing up and I hope those freckles are no big deal.  My nails have been breaking easily since I finished chemo.  I'm sure they were weakened, and winter dryness doesn't help.  And woohoo to hair in all the right places!

Beaglesgirl

My last radiation is tomorrow! Although my skin is raw and my belly is torn up (literally) from my hysterectomy/ oopherectomy last friday) My heart is full of happiness today.

Its been a long road. I was diagnosed the first day of spring then came the bmx, ac&t and 33 rads.

Now a new day of counting... the warrior becomes a survivor.

Love always!

L 

LuvRVing

Woohoo Beaglesgirl!  You'll be healed and able to enjoy Christmas!!!

For those of you still doing or about to do rads, if you hate that horrible hospital gown, take a cotton tshirt, cut it down the back, sew ribbons or somekind of "tying" ribbon at the neckline and about halfway down the back.  Voila - a rads treatment tshirt!  Took me ten minutes to make one.  Now I don't have to wear those ginormous, hideous hospital gowns.

 

Southamptonmom

 This is what I've been ouching. All my finger nails, and some of my toe nails.

kks_rd

Yes... that's what all my toenails looked like, except the damaged part has since lifted and broken off.  So I only have about 1/3 of a nail on most toes.  The fingers have hung on and are almost grown out.  The funky smell is gone too. 

I feel for ya Rose!!  It's definitely a "T" thing.

LuvRVing

Oh ouch!!!  I wondered what it looked like, that has to be most painful.  I am so lucky that I didn't have that side effect.  And interestingly, I had some toenail fungus on my two big toes that seems to have disappeared.  It's so weird how we all have different SEs. 

Southamptonmom

It doesn't hurt as bad as it used to!!! It is dried blood, no fungus. I used tea tree oil on my toe nails because they were itchy umder the nail. So much better now. I don't feel like using a hacksaw to cut my fingers off!

seacretgardn

Ladies I hope it's ok if I jump in here with a question(s).



I just had my first AC last Thursday. I have not seen many post regarding burning bladder.



I already was diagnosed many years ago with IC (interstitial cystitis) and one of the SEs of cytoxan is bladder irritation. Aside from being well hydrated, which I was, no one could tell me what else might help prevent this.



Also, one week out and my head is covered with itchy bumps. Is this just a pre cursor to my hair leaving?



Those that are finished with treatment, so happy for you, hope you are well, that any lingering SEs will ease.



Those who are almost complete, many blessings and hugs!

LuvRVing

Seacretgardn - sorry you are suffering with the bladder irritation.  I don't have much of an answer as I didn't have that problem.  I drank at least 96 ounces of liquid every single day and most especially, the day before treatment, and that chemo was out of my system ASAP.    Maybe cranberry juice would help? 

Many of us experience some kind of scalp irritation before hairloss. I didn't have bumps as you describe, just a feeling of a "too tight ponytail" a couple days before the shedding started. 

Good luck with your treatments!

Hugs,

Michelle

seacretgardn

Thank you Michelle.



I was careful to drink tons of water, since I'm very limited on what I can drink.



I'm gonna just have to get through.



Someone suggested additional fluids, have to check with the onc.



Laura

dsnydawn

Laura, I had the itchy bumps....felt like I had tiny pimples on my head. I would drive my hubby nuts,"look at my head" that was probably a week or so before my hair started falling out.  I'm with Michelle about the fluids...hope it gets better

Dawn

Southamptonmom

Laura, I have IC as well, and had bladder surgery a month before starting AC. I drank so much water, I could have floated away! Are you on any medication for your bladder like Urelle? I also took Prelief. It is an over the counter medication that helps with bladder irritation. Are you close to Philadelphia? The leader in IC treatment is at Hahnemann University Hospital. The idea is to pee the AC out quickly. Another trick I was told, is to add pure Aloe juice to your water to keep the urine alkaline. You can purchase it at any health food store. I also took probiotics. Good luck!

seacretgardn

Southamptonmom, thank you for these great tips! And the info regarding the hospital. My onc just happened to call and I asked her about it. She hadn't heard of this. You took this prior to your tx?



I live in northeast NJ, and haven't found that many Drs know how to treat IC. I hope your surgery gave you good results.



Dsnydawn, thank you for sharing your experience.



In a very few days, not only will I be bald, but with bumps! Ugh.



Laura

dsnydawn

Laura, bumps went away ...but bald thing does last (finished in mid sept) and still have to put something on my head...almost to the point of going topless...check out the hair thread under the chemo forum, some women post pics of their hair growth...kept me from getting too depressed about my hair, as I knew at some point it would start to grow

kks_rd

Welcome Laura!

I've been thinking back over the past week or so, which feels a bit like a blur between insanity at work and Christmas preparations... but I do not recall having any hot flashes in the past few days.  Could this mean my ovaries are alive and kicking again?  No period yet but it would not surprise me if it came back soon.  MO warned me to be ready at all times!

13 weeks PFC and I'm pretty sure I'm going topless from here on.  Check out the "Hair hair hair" thread for a recent pic of yours truly.

Big hugs to all my June friends

ssmith37

Hello ladies.  It's been a while since I have been on here because I just wanted to forget about it and move on.  But I realize I have rushed it and I'm completely suffocating with worry and fatigue.  I am emotionally exhausted!  I finished up my chemo in October and have been going through radiation.  I will be finished with that sometime in February.  Believe it or not, I've lost track of how many treatments I've had and how many more I have left.  I don't even remember how many my onc said I need.  I think it's 35.  Anyway, I had a bone scan on 12/30 because my bones and joints are hurting so badly.  It showed degenerative changes where the pain is, so that was comforting.  However, it also showed "a focal area of uptake in the mid sternum concerning for a metastatic lesion."  I'm supposed to have yet another biopsy whenever they call me to schedule it.  I'm so discouraged and tired.  I really thought I was on the road to putting this behind me.  It's difficult for me to focus on work.  All I want to do is go home and curl up in my bed and disappear from the world.

Sorry for the bad news.  I just needed to vent.  I'm also sorry for not keeping up with all of you.  I'm sure you all can understand just wanting to forget.  I hope you're all doing well though, and I will read your previous posts to get up to date. 

kks_rd

Aww Stephanie, sorry to hear you're having a tough time.  You can always vent here!  Fingers crossed for a good outcome on the biopsy.  Keep us posted!

twistedsteel

Stephanie,

That sucks! I am so sad that you are struggling. I know the curl up in bed feeling.



I am back on Ativan for sleep bc I need mental and emotional respite. I am in the middle of rads (incision opening up from rads) and have to have an additional round of chemo due to 3 nodes positive from UMX. I thought rads and AI's would be it. 3 more months of chemo... Ativan please. Only at bedtime.



Vent away. Hideaway if it helps. I cannot imagine hearing your news.

annie3310

Hello all you helpful women. I'm scheduled to start dd A/C next week x 4, followed by Taxol x 4. I've read through a good portion of this thread and have learned a lot. The one thing I haven't learned, of course, is how I'll fare regarding side effects. I seem to be concentrating more on that than worry over whether the chemo will be effective in killing off the cancer, and I probably should keep my eyes on the prize. I'm a triple negative, a fact that has freaked out my partner and I. I see a lot of other TNs on here and they seem to be doing about the same as others, so I'll just concentrate on what's in front of me.



We're about to leave to have coffee with a Chicago woman who is TN and just completed chemo and surgery. Between the information I've gotten here and from others who have been through it, I feel better prepared for what's facing me. I'll keep posting.

pebee

Hi Annie and I am glad that this was a help.  Do they have a Jan A&C group going?  One of the biggest helps was going through this at the same time.  THat, to me was the biggest blessing of this thread.

Don't knock the side effects - they are going to be the focus for the next few weeks.  Think of them as the roadblocks that you will have in this journey, and they need to be kept track of.

Southamptonmom

(((Stephanie))) I am so sorry to hear your news. Have you had the biopsy yet? Praying for you and hoping for good news.

annie3310

Thanks, Pebee. Would the January A&C group be a part of this thread or a separate thread?



This forum is also helpful in that I know if I'm having a hard time with SEs, there are people who understand. I've been in recovery for over 20 years, and in that world we are very familiar with the concept of finding the greatest help from those who have been through the same thing. So whether right here or in a more time specific thread, I know I'll be back to report on my journey.



I also have to get my stats entered so they'll show up below. I'm triple negative, clinically given a stage IIA, with. 2.6cm Grade 3 tumor.

kks_rd

Hi Annie!  My suggestion is to start posting on the January 2012 thread.  There doesn't appear to be one specifically for AC&T but you will find a bunch of other women on that thread who are on that very regimen.  Of course, you are always welcome to post here, but this thread is a bit less active because we're not in the throes of chemo treatment right now.  You might find it helpful to read back though, so you know what to expect in terms of SEs that kick in at certain times.

To get your stats entered, there's probably a few ways you can do this but give this a try.  At the top of the screen you will see a header that includes "Welcome, annie3310!"  If you click on your username there, it will bring you to your profile.  There you should have the option to edit your diagnosis.  You can also edit your profile and it is there that you can add a signature line.  What's the difference?  Lookk below at mine.  My signature is just my name "Kat."  My diagnosis info is the line below it.

Hope that makes sense.  I'm not always the most tech-savvy person!  In any case, please keep us posted on how you are doing.  You and I have similar diagnoses and I want you to know there is more hope than ever for us triple negs.  You might want to check out the triple negative forum too.  Good luck!!

annie3310

Thanks, Kat. I'll head into my first chemo with both optimism and dread. I've had a whirlwind of conflicting emotions since being diagnosed, and I know I'm not alone with that.

beckyv

Marial - thank you so much for posting.  It is so much of a relief to see that some do get through this with very few S/Es and giving me hope that I will be one of them - since my first round starts on 1/31/12.  Seeing the positive is much needed!!

kks_rd

So, it's a long post, but here's a chemo-related rant I just posted on my caringbridge site.  Anyone else having problems with their eyes?

...Another lingering effect that I didn't anticipate is long-term treatment-related SEs. One example has to do with my eyes. Recently it has become near impossible to wear my contact lenses... it's like my eyes have just dried up! For the past few weeks, I've struggled to get through the day wearing my contacts, I was putting re-wetting drops in on an hourly basis. This seemed very strange to me since it seemed to have such an acute onset.

So last Saturday, I went to see the weekend eye doctor. His impression is that it is a late effect of the chemo. Indeed, I had dry eyes during chemo, although not nearly this bad. His theory is that chemo basically interfered with my tears, and more recently this condition being worsened by rads-related fatigue (the radiation itself does not scatter anywhere near by head).

He has suggested changing to a different cleaning solution, and reducing my wear time. So basically, I am wearing my contact during work hours only, and going with glasses the rest of the time. The weekend doc began preparing me for the possibility that my treatments have basically pushed me to the end of my contact-wearing life. In other words, a terminal prognosis. (bad joke I know... hey, it's how I cope)

I was already planning to see my regular eye doctor in a few weeks (some of you might remember that I have a hypopigmented spot on my retina that they are watching closely.. yep, another cancer-related follow-up!), so I'm giving these new interventions a try and will be discussing it further with him at that time. I guess it's possible that as I feel better all-around, my eyes will do better and I can start taking contact lens wearing for granted again. Only time will tell.

I'm having a harder time than one could have anticipated with this. Can't really put my finger on why. People who have seen me in my glasses tell me that I look good in them. As true as that may be, I don't feel like I look like me. Plus, I would love to get through my day without so much commentary on my appearance, even though it's meant to be positive and encouraging (and it is).

Put another way, one year ago I was a long-haired, two-eyed, athletic chick more or less in the prime of her life. Fast forward to today, I've got this super-short hair, four eyes, and have (temporarily) lost some of the fitness I worked so hard to develop. I feel like the past 10 months have aged me by a decade. So when I look at myself in the mirror, I see a very different version of myself, and I know others see the change too. To say nothing of the changes not visible to the eye (emotional or whatever)!

Vanity issues aside, there's a reason I always went with contact lenses. Wearing glasses gives me headaches after just a few hours - always have. I feel less-than-100% safe wearing them while driving because my peripheral vision is so blurry. And even though I have some of the lightest ones available, they give me pressure points on my nose and over my ears. They are just so damn uncomfortable!! I will have to find out if I would be a candidate for lasik.

Griping aside, the fact remains that this is still a very small price to pay to save my own life. It just takes some getting used to, that's all.......

LuvRVing

(((Kat)))  I so hear you, especially about the contact lenses thing.  I have been wearing contacts since I was 17 and I'm almost 62, so you know I've "seen it all" in the contact lens department.  I wear Night'n Day lenses, so 30 days consecutive wearing without having to remove them.  I also wear them as monovision - left eye corrected for near vision, right eye corrected for distance.  These contacts were my alternative to Lasik as I didn't have to mess with cleaning, and it was wonderful to wake up in the morning and be able to see.  During chemo, my brain couldn't perform the monovision function and couldn't compensate.  I, too, switched to wearing my glasses.  I know exactly what you mean about not looking like yourself at all!   The good news is that my eyes seem to have recovered and I am back to wearing my contacts full-time.  I take them out once in a while for an overnight break; but otherwise, things seem to be back to normal.

And talk about aging!  When I knew I was going to lose my hair, I said I was never going to color it again because I had "earned" my grey hair and it would be OK if I looked like a grandma.  Well, one look at that white chemo hair emerging on my scalp and I couldn't color it fast enough!  So much for that look - I thought I looked older than my mother...lol!

You just finished radiation...give yourself a few weeks and I think you will be surprised at how much better everything will be.  It's hard to be patient when you've been through so much, but I guess that is what we have to do...be patient. 

Hugs to you!

kks_rd

Oh Michelle, thanks so much for this reply.  I didn't realize I needed to hear this kind of response from someone who truly understands, but without knowing it, you've said exactly what I needed to hear.  And I am encouraged that you've back to wearing contacts again.. there is some hope!

It's so easy to say we're going to embrace a certain look, until that day is actually upon us.  I get why you would color your hair.  I think, for me, some of my "deal" with wanting to wear contacts so badly is that it's one of the last appearance-related aspects of 'the old me' I still have.  So indeed, we'll see what happens over the next several weeks.  It's so true that now is the time to be gentle with myself.  As we all should be!!

Thanks again. ((((Michelle))))