June 2011 A/C & T Groupies Unite!

LuvRVing

Kat - my tattoos were done at my planning session.  My dry run is Tuesday, then my first treatment will be Wednesday.  My guess is your simulation and my planning session are the same thing. 

Southamptonmom

I'm going to the radiology oncologist Monday and Herceptin infusion Tuesday. Not looking forward to any of it. Enjoying my family today.

kks_rd

Sounds like a lot of us have "stuff" going on next week.  Rose, you should join us in the December rads group! 

Agreed, it is nice to have the family time this long weekend... 

pebee

my tattoes were done on the planning session.  Dry run Monday, start Tuesday.  For once, I am ahead of Michelle.

The tattoes are really, really, small - if you have freckles, they look like a "darker" small freckle.  It is only on the skin that never saw sun (in my case, my belly) that they are obvious.  But, unless someone is looking closely, they would look like an ink dot.

And for South who wrote about her port - your port should not hurt.  I rode a bike this summer, no issues at all.  I am thinking about getting it out today if the weather holds.  If it is hurting, call your doc and go in. It may be infected.  I ended up with contact dermatis (spelling?) which was caused by the plastic portion of the port needle resting on my skin.  Once they figured that out, they took pictures and uploaded a note to my phone for others to access the port without causing the skin issues.....

Southamptonmom

I've complained about my port from day 1. The nurses in the chemo room said a lot of people complain about them. I think I've had every complication possible at every stage along the way.  I think I may be heading for a seroma and have a swollen node under my left armpit. Can't catch a friggin break!

pebee

Then something is wrong - seriously, the only time my port hurts is when the skin covering it gets red.... I am sorry that this is happening - I hope they can make it go away.

One question - anyone else post chemo, pre-rads that is exhausted - as in a trip to the store means you are done for the day?  I have had that side effect all week, and I was wondering if it is normal or something that I need to call in... I am not looking forward to this level of tiredness with radiation coming up.

kks_rd

Hi Pebee -

I'm tired, no doubt.   But it's more like can't get through the day without a nap - I wouldn't characterize it as being quite as bad as you describe.  Don't know if that helps   I totally feel your vibe though with regard to feeling trepidation about starting rads already feeling fatigued.

Hope you're feeling better soon!  I say take tomorrow easy... if you still feel crummy on Monday, there's no harm in calling it in, right?

julee_stayin_strong

HI EVERYONE!!! haven't been on in a while. Had my last Chemo today!!!!YYYYAAAAA!!!! Total of 4 A/C AND 12 TAXOL. I feel kind of weird, not knowing if i should feel happy or what. gonna miss all the nurses at infusion. I get my port out on Dec. 6th and do my CT Simulation for rads on the 7th. Did anyone have the port out yet?  how did it go?

RALSTON- i feel like you, i've gained 23 lbs, get out of breath all the time and feel like a FAT COW!!!  I painted my bathroom about 5 wks ago and have had a swollen arm/lymphadema ever since!!! have my right arm bandaged up like a mummy for a week now and i want it OFF!!! i'm right handed and i am using my left hand for everything and it SUCKS!!!  take a shower every other day. this arm thing is driving me CRAZY more than anything else. i'm such an  invalid!!! can't get a sleeve until swelling goes down. SO GIRLS DON'T DO ANYTHING REPEDITIVE FOR A LONG PERIOD OF TIME.NO PAINTING!!! LOL  i have little bumps on my arms and now on my right hand knuckles, onc. says they are Taxol bumps. they itch. my hair on my head is growing back, armpits and eye lashes and eye brows too. i wish i wouldn't get the leg hair or vajajay hair back. LOL i wonder how long it will take for my nose to quit bleeding? anybody have this problem?

well, by for now. KEEP YOUR CHINS UP, THIS TOO SHALL PASS. EVENTUALLY LOL

kks_rd

Hi Julee!  Congrats on being DONE!  I didn't have any problems with nosebleeds.  And I am amazed with how quickly you're moving on to rads.  This whole treatment thing will be soon be a distant memory

Southamptonmom

CONGRATULATIONS, Julee!!! I had daily nose bleeds. I am 7 weeks out from last chemo, and I believe the nose bleeds stopped by a week or 2. My hair is so soft, but VERY gray!

What I thought was a swollen node in my left armpit was a seroma. I didn't know they removed 2 lymph nodes on the left as well. They drained it with a needle (ouchy). I also having cording in both arms. I have pretty good ROM, but it really hurts to stretch and looks like a cord sticking out of my arm!

I have my first planning for Rads next Friday. On to the next step. Herceptin infusion today...

LuvRVing

Yeahhh, Julee!  Doing the happy dance with you!    So sorry about the LE, that is a big bummer.  I'm very lucky that I haven't had this problem and I have hyper-mobile joints so my ROM is really good.

It's so interesting that some of us gain weight and some lose...even though I didn't have that much nausea, I could eat just tiny portions of a meal at a time, and I lost a couple of pounds.  Maybe it's the steroids, which I didn't have as much of as the rest of you, especially you who had weekly Taxol.  I hope it comes off easily for you as you recover from chemo.  I'd take a few pounds if I could...need a little belly fat for DIEP reconstruction.  I've got lots of time, though, until late next summer or fall when I get it done.

Today I have my first "dry run" rads appointment, then I start for real tomorrow. I hope the mild weather continues as it will make the drive to Boston a whole lot easier.

At almost 9 weeks PFC, my hair is over an inch long, but grey and fine like baby hair.    I used a shampoo-in temporary color to make it look fuller.  I have hair growing like crazy EVERYWHERE else, too - armpits, legs, nederlands, eyebrows... 

kks_rd

Yep - I've got hair everywhere too!  My head hair isn't quite long enough for me to go "topless" just yet, but we're definitely making progress.  One thing that is kind of bothersome is... I have some of that transparent-ish downy fuzz on my face.  If it were colored it would look like a 5 o'clock shadow!  It's not feminine at all and I'm wondering if it will go away when my ovaries kick back in or..??  I'm seriously wondering if I need to go to my dermatologist/spa to look into hair removal treatments.

I met with my BS yesterday and although there was some confusion about the path report, he called this morning to let me know I am done with the surgery part.  I'm also on to rads - my sim is scheduled for 12/9.  Julee, join us in the Rads December 2011 thread!  Anyone else with us?

Ralsper

Congratulations Julee!! I finished chemo last Tuesday, Nov. 29, 2011.Total 4 AC and 12 Taxol. Well...  there is light at the end of that long tunnel  Taxol was a piece of cake compared to AC, but I gain 25 pounds (and counting!) and I have had a really hard time trying to motivate myself to do the right things (exercise, drink water, etc.) Neverthless, I am proud of myself because I was able to "freeze' my head, feet and hands during chemo (I wore Elasto-Gel Hypothermia Gloves and Slippers) and none of my nails fell off or turned a blackish color. Who knows if it worked or I was just lucky........ The Taxotares and Taxol are very famous for bone, joint pain and the dreaded neuropathy, I took glutamine in powder form and I never got the neuropathy. I never lost my eyebrows. I used Latesse every night on them and my eyelashes. Lashes thinned a lot.  I did lose every ounce of my hair, except my brows and the hair on my head (I used the PCC (cold caps) It thinned a lot and I lost about 65% of it evenly. Where my hair thinned, I noticed it started growing back about my #5 Taxol, and really came in fast.

I started chemo July 19 and I had a normal period a week later, then I had another normal one 15 days later!!! Since then I have not had a period, but a lot of annoying hot flashes (I hate them!!!)

I have physical therapy every other week to help with my arm, but I have not regained all the mobility and the compression sleeve hyper heats my arm. I cannot wear the sleeve out of the house with every store and shopping center using heat everywhere. My PT says that the overheating can negatively impact my arm so I've stopped wearing the sleeve if I go out. My arm still is painful and I dream for the day that my arm is pain free!!!  I think it is almost as big a deal to be pain free as it is to beat cancer itself!

I was doing so well through all of my infusions that with two Taxols to go, I thought I was home free.  No such luck.  I began feeling a big pain on my butt and after trying to see what it was in the mirror (and having my husband verify what it was), I discovered that I had a 2 sq. inch outbreak of "SHINGLES".  I was devastated and was afraid that my MO would stop the chemo until the area healed.  The good news was that at my next visit to my MO, I confessed and she felt that proceeding ahead was the best way to go.  My blood tests all came back within acceptable levels and I was ABLE TO COMPLETE MY 11^TH AND THEN 12^TH AND FINAL CHEMO INFUSIONS.  Finally, I made it all the way and my butt doesn't hurt.

One more thing.  I've been suffering from severe dryness of my nasal passages.  Very, very dry and when I try to blow, I can get some mucous but with some dried blood in it.  Sorry if this sounds gross but at least I haven't had any nose bleeds.  I think using a children's saline solution (Little Noses by Little Remedies) has helped.

 I will get together with my MO on Dec 13 and I will have more TE in the following weeks, but I am taking a break during the holidays. On January 5^th simulation for rads. I don't know when they will remove my port, but I will not let them do it until January, because I want a "pain free Christmas" and since I do not know how long it will take to heal (I was in pain for a long time after they placed it).... then radiation, tamoxifen, ovary removal, and a very "happy" 2012 .

LuvRVing

Congrats, Ralston!  Yippee on finishing chemo!  Did your onc give you Valtrex for shingles?  It can help and might prevent any future flare-ups until your immune system recovers.  I had cold sores after TX #1 and mine put me on it until six months after I finish rads.  I had a shingles vaccine last year so hopefully I don't have to worry about that, ever.  It can be extremely painful and last for months. 

I wanted to make sure I had a clean PET scan before I had my port removed...just in case.  Fortunately, I got that news two weeks after finishing chemo.   Be sure to talk to your doctor about how frequently it needs to be flushed if you are going to keep it a while.

Kat - someone suggested something for facial hair remover in the Hair, Hair, Hair thread.  You might want to check it out, I think it was made by Clio.   Mine isn't too bad, I'm going to assume that it will go away sort of like a baby's down disappears over time.

julee_stayin_strong

south hampton- what is the cording in your arms you r talking about??

julee_stayin_strong

Ralston- thanks 4 the info. i never had problems with neuropothy or the finger nails, i lucked out. do u feel totally out of shape and exhausted when u do simple things? went to the mall to walk with my mom and could only make it 1 1/2 times around before i had to sit. (4 times around is a mile) and using my left arm, because my right arm is still wrapped like a mummy, my arm gets so tired. I SERIOUSLY am annoyed by the lymphadema more than chemo. my arm has been wrapped for 2 wks and it is DRIVING ME CRAZY!!! i just need the swelling 2 go down so i can get a sleeve. has anyone wore a sleeve??? i found this lympha-diva web site that has really cool ones.

Ralsper

I have cording in my arm as well, but the PT is helping a lot.

Julee- Although I am "huge" now, I can move and walk without getting tired, but it is the motivation to work out that it is gone... Any of my clothes fit and  I had to buy new clothes that make me look even fatter but "comfortable". I am trying to count calories, so at least I don't keep gaining weight. I bought a "fancy sleeve" and I hate it. It was too tight and warm. I ended buying a Juzo that has worked fine.

Michelle- Thank you for the "port tip". I will ask my MO.

LuvRVing

I have a sleeve and wore it on my flights from Boston to Florida.  I found it pretty comfortable - it was fitted by my LE therapist.  I don't actually have LE, so I'm probably not the best person to judge overall comfort.  My insurance covered the cost of two sleeves and two gauntlets, so be sure to check on that.

Ralsper

I have a really mild-lymphedema. My arm is not swelling but I hav a sense of heaviness in my arm and my armpit is numb. I have not recovered completely the movement on my arm and I don't know any more if it is because of the TE or my nerves or who knows... My insurance covered my two sleeves. The one that I like is from Juzo, but I had to return 2 before I found one that I like. Since I gain weight I have to stretch them because they became "too small" and I was not going to buy more. Many times bandaging and garments become an exercise in strategy and what works for one patient isn't going to work for another. I think just sampling different garments, different bandage strategies, or different alternatives in mechanisms of compression may help. According with my RO the risk of develop lymphedema after getting radiation to the underarm where positive lymph nodes were removed could be as high as 48%. I do everyday manual lymphatic drainage, using massage-like techniques to stimulate lymphatic circulation and therapeutic exercise to restore lost strength and flexibility and to increase circulation.

I had an appointment today with my PT and she really told me off. I have to exercise. This is not a choice. Exercise (cardio, without putting strength in my arm) reduce 40% of recurrence and she gave me a piece of paper with this info:

• Exercise is an essential component of lymphedema treatment because the movements of muscle and joint pumps increase the rate of lymph flow up to 15 times above the resting rate.
• Exercise is an essential part of the Complete Congestive Therapy (CDT) program that manages the swelling of lymphedema. This is because exercise helps drain to lymph out of the affected area and eventually into the bloodstream.
• Exercise is also part of a healthy lifestyle. It increases your energy level, helps to burn more calories to maintain a healthy weight, and increases the feeling of well-being.

Well, besides the fact that for the last two months I have been in the worst mood (I became a total bitch!) I am feeling pretty good, so I better start putting a plan together to get in shape ;-)

Southamptonmom

Julee, This is cording... http://stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

Ralston, Congrats on finishing!!!

I am feeling stronger, but these doctors' appointments are getting on my nerves! I can't get anything done with all the running around. The good thing is that it is getting me on my feet...

LuvRVing

Ralston - my RO also discussed the increased risk of LE from radiating the axilla area.  I am not being radiated there, fortunately. 

Rose - so glad you are getting better!  I hear you about doctor appointments.  At some time in my future I'd like to go more than a couple of weeks without seeing a medical professional!

julee_stayin_strong

Ralston & Southhampton~ thanks for the info.

Southamptonmom

I had some OT/PT at home from the OT specialist. She work on the cording today (OMG PAINFUL), and I could hear and feel the popping. Although my arms are still tight, I feel so much better, and can see that this too shall pass... I can reach the wine glasses on the top shelf with only a small amount of difficulty now. I'll be switching over to a LE specialist that works with cording all the time. I am so lucky that she works in my BS office only a mile away! My goal is to be able to jog there by spring. Now, if I could only get rid of the neuropathy!!! I feel like I am walking on rocks by the end of the day, and my legs don't work. My friend took me to Kohl's (I started a Kohl's annonymous), and I tried on a hundred sneakers. I kept saying and thinking, "These are so uncomfortable," "these feel so hard." I forgot that my feet feel like I'm walking on rocks, so any shoe is going to stink. Duh Any suggestions on comfy, squooshy, sneakers? I heard that NewBalance TrueBalance are good, but I couldn't find any.

My hair, too, is growing everywhere but down yonder. I woke up 2 days ago and my right nostril was killing me. I think it's an ulcer from an ingrown hair??? Just thought I'd share in case anyone else was experiencing that.

My nails still hurt, but not as bad. They are completely separated 2/3 down. At the suggestion of another poor soul who is experiencing nail problems, I cut them all the way back so that Ican't hear them clink on the table, and that helped a lot.

Michelle, TGIF!!!! Relax for a couple days, you deserve it!

tldrose

Had my DIEP flap stage two surgery done yesterday ~ It has been more painful than I had expected! I am soo glad my port is finally out!! Most of the pain is in my hips where the lipo and scar revisions were done. Breasts are alittle "sore" but not as painful as my hip to hip inscision revisions -

My incision where my port was first placed hurts just as much being taken out as it was when it went in! ~ My breasts came out okay - they both match now! Full C cup - and I'm happy about that, just nervous how the nipple will heal and how long it will take.. Its been 6 weeks PFC and it still seems like it was yesterday ~ Glad to see everyone here is doing well on here and still fighting~

LuvRVing

Tldrose - congrats on completing DIEP stage 2!  In a few days you'll be feeling so much better!

tldrose

Thanks LuvRVing ~ I hope I will feel much better in the next few days - today has been pretty rough - I am just excited that my surgery is over now, port is out and am looking forward to no further surgeries and less & less dotor appointments and needles!

pebee

Fluid retention...

Hello ladies.  I have alot of fluid retention.  It is all over so it is not lymphodemia, but my bad arm is starting to hurt and I am wearing the sleeve.  Right now, I am in radiation and I am going to ask to see the doc or nurse tommorrow.  I am not due back to the Onc until next month.

Anyone have this?  I went through my meds and gabapentin for the neuropathy is a possibility.... Before I stop it anyone else?  I am going on 2 months from my last chemo treatment......

nans

Hi ladies, 

 I'm new to your group.  I was looking for information about the after affects of chemo and found you all.  I was diagnosed with metaplastic BC in April. I had a MX in March followed by 4 treatments of AC then 12 of taxol.  I'm now 12 treatments in to a 30 treatment radiation plan.

I was pretty lucky through chemo.  Lots of nausea, fatigue and hair loss all over.  No nail problems and my nueropothay was mild and went away after chem ended. It's been a month and a half since my last treatment and I'm still dealing with lots of joint and muscle pain.  My MO told me to expect this....but I guess I didn't.  Is anyone else dealing with this?  Any idea how long it lasts?

Nan

LuvRVing

Nans - welcome to our group!  It's not as active as it was when we were all in treatment, but a few of us still check in regularly.  I am not having any unusual muscle or joint pain.  I see you are TN so I'm assuming you are not on an AI or Tamox.  Do you take a cholesterol med (statin)?  They can cause joint and muscle pain.  Is it more than something that advil can cover?  I already take an anti-inflammatory for arthritis, so I'm probably not a good person to respond.  I hope you get some relief soon.

Beaglesgirl

Nans

I have pretty significant bone pain in my legs still . I just saw my onc for my two moth follow-up and he confirmed that its due to the chemo. I have been taking narcs for the pain but it bums me out because there is no end date to the pain. My doctor said it will go away but he prescribed fentanyl(sp)  patches this last time I saw him which tells me he believes I am in it for the long haul with the severe pain in my hips femurs and knees. I am not ready to use those pain patches. They scare me. I'm going to give it a while longer and see it it doesn't improve when I'm done with rads which will be in 5 days.

Laura