Has anyone started a forum for Chemo in Dec 2008?

Mandy1313

Lisa

Happy Birthday! Have a wonderful day and a drink for me too...last chemo tomorrow!

Many many many happy returns!!!!!

Mandy

EleanorJ

Firni - Thanks for the info, I think they're the only one I didn't apply for today!

Texas, sorry about lymphedema Not a fun one, I've been dealing with it for 4 years now, find yourself a good therapist, it is manageable. And you need a new med. onc., you need someone who will listen to your worries and that you can trust.

Firni

Whoo hoo, party time for Mandy tomorrow.  Congrats on your last tx tomorrow!!!

EleanorJ

How did I miss that, congrats Mandy1313 on finishing chemo

Texas357

Thanks Firni.

I'm still trying to figure out how I would find an oncologist who is willing to work with me as I move onto the AI treatment. Usually I rely on referrrals. But I'm in a tight circle of doctors who all work together now. I'm not sure they'd be willing to give me other names.

Mandy1313

Back from that last chemo. So far so good.  I started on November 11 and it has been a long haul.  Thanks for the good wishes.

Texas, perhaps your internist or your ob/gyn can give you a referal....I do not know where you live so perhaps there is a second major medical center there.  Then if you want, you can google the names and see what you find out about these docs.  Good luck with your search and don't be afraid to do this....a doctor you can talk to should be part of the requirements.

Hugs to all.

lisasayers

Thank you for all the birthday wishes...it has been a great day so far!

Mandy...CONGRATS on finishing chemo!!!!!!!!!!!!!!!!!!!

havehope

Mandy congratulations!

swest

Happy Birthday Lisa!!!

swest

CONGRATULATIONS MANDY1313!!!!!  I know you are need feeling back to normal yet but you will soon!  Keep on chuggin along!!!

Bobcat & Firni - I had PM'd you some information on financial help.  Did any of it help?  I can try to get some more information from my co-worker who used to work with the American Cancer Society.  Just let me know. (you too Texas)

Sonia

Texas357

Sonia, if your doc knows of another medical oncologist who is a bit more progressive in The Woodlands area, can you PM me?

Ladies -- how is your hair doing? I've got none on my body except my head. The sides are about 3/4" long but the back and top is still just about 1/4" long.  Talk about funny looking! Much more gray than I predicted, but then I haven't seen my true color for a few years.

Firni

Hi Sonia,  apparently we have too much money to warrent any help from anyone.  It still isn't enough to pay our normal bills much less the medical ones, but we are still don't qualify.  Bummer.

 I'm 7 weeks past chemo and  I have no hair anywhere.  OK I do have the stubble that was left when DH shaved my head on 12-22.  That never fell out, but it is not growing.  I have no lashes, brows, leg hair, armpit or any other body hair.  It's just still all gone.  

swest

Texas - I sent you a PM.  I would highly recomend my Onc.  You deserve to part of the team.  I would like to believe that I'd change oncologists if I were you.

My hair is growing!  Yea!  BUT......it is very white.  I had a trim to cut back the straglers that never fell out so I have about 1/4 inch of hair.  I have ditched all hats and caps! Back to shaving all of the time!

Hang in there Firni!  At about 7-8 weeks post chemo is when I could really see some growth.

I had my first TE fill (50 cc's) last Tuesday.  So far no pain.  Yea!  For those who have gone here, how long before I start to see bumps on my chest? I feel like an umpa-lumpa (spelling) from the Movie Willy Wonka and the Choc. Factory.  Bald, fat and no boobs!

bobcat

Sonia - I am trying the Cancer Care and Patient Access network that was recommended.  My COBRA runs out in July and that will be another challenge because of pre-existing condition, most companies won't touch me for 6-12 months.  Arimidex is over $300 month!!

My hair is starting to grow - about 1/8 inch long and now stalled a little.  It's very soft but full and salt and pepper. A little in other place but not a lot.

Swest - another 100cc's and you'll have nice little mounds starting.  I had my 6 month check post exchange today and she did excellent work.  Two more tattoo sessions on the nipples and they'll be done.  I'm large than before but getting used to it and SO loves the look.  They balance out the weight gain )

Texas - I would look for another Onc too - you need to be part of a team that you feel comfortable with and up on the current treatments.

Congratulations Mandy - haven't heard from you in a while.  Happy Birthday Lisa.

Firni

Sonia, congrats on the first fill.  You are on your way!  I had 120 cc's put in when I had my surgery. I looked like I had little bitty AA cup breasts but definitely bumps on my chest.  How big you look with how many cc's really depends on your build.  How many cc's are you filling to?

I started seeing a lymphedema specialist this past Tues.  I'll see her 2 times a week for 2 weeks then once a week for 2 weeks.  Then just if problems arise.  She did have me order a sleeve and a gauntlet.  After just one treatment with her I'm not seeing a difference in the swelling in my hand yet.  I just made an appt. to see a podiatrist on Monday.  My toe nails lifted during chemo.  Now they are still raised up and curling into my toes and it hurts to put shoes on.  I'm afraid he's going to tell me the nails have to come off.  I hope there is something else he can do.   It just seems to never end.  I'm afraid to go to a dentist.  Now after June 20, it will be time for my female/pap exam.  I can hardly believe in about a month it will be one year since we found the lump and this journey began.

Texas357

Firni, I just lost fingernail #3. The others aren't far behind. I've never had long nails but they always looked nice. Now I'm not comfortable with people seeing my hands. I know that's not right. It's nothing I did, and they should walk in my shoes before they pass judgment, but still ... it's hard to feel feminine with no hair, no lashes, no brows, super dry skin, rad marks on my chest, a tissue expander, and nails that are either black or missing completely.

I have my first dental appointment next week. Pap exam isn't until August. That's when my journey began.

swest

Thanks everyone for listening to me grumble!  I think I'm better now.

Firni - I think my PS said 500 5o 600 cc's will be my final.  I am just looking forward to having bumps.  He did not fill any at TE placement. 

I hope you all get some relief from your nail issues.   I understand not feeling feminine.  Some day these SE's will go away!

bobcat

Sonia - I had 150cc's at expander installation so had a nice A cup from the get go.  Ended up with 550cc's that looked high on the chest, crooked and weird but the final implant is 500cc style and although bigger than I might have chosen - really does look natural and proportional and settled nicely into place.  Every step of this process brings anxiety....you'd think going bald, having bad SE's, losing your lashes and brows and nails would be enough.  We also have to contend with how we'll look in the future while waiting for the other things to come back to normal.  You are all so strong and resilient...let's keep communicating.  My journey began a week ago last year - can't believe all that's happened since then.

Firni

Is anyone else getting ripples or ridges in their fingernails as they grow out?  I've heard that your fingernails will get white lines going across, one for each chemo.  But I'm getting deep ridges and dips going across.  I have two on each nail now.  Actually I have three white lines with a dip in between.  I had thought that putting polish on them would hide the brown color but the ripples show really well with polish.  

LindaBusEd

Texas & Firni, I noticed when I had my manicure yesterday that I had white lines going across. One of my nails is almost completely white (looks like what your nail looks like when growing out); some othrs are getting there. I haven't noticed any deep ridges. On one of my big toes, it is halfway brown. The pedicure as great!!!!!!!!

 My brows are almost nonexistent; my lashes are thinned also, especially the bottom ones (I only have 3 on them). What a bummer! Why couldn't all of this happen while on treatment. What treatment were ya'll on? I had 6 of TAC and now on Femara. 

Have a great rest of the day!  Linda

bobcat

Linda - I lost all my brows and lashes after treatment - what an insult!!  My brows are now starting to poke through and I have lashes back on the bottom.  The top lashes are still trying to come in but I put mascara on whatever is there.  My hair is starting to grow ever so slowly and it feels itchy.  How do you feel on Femara?  I am on Arimidex and that has it's own set of SE's.  My teeth and jaw are in constant pain along with wrists, finger joints and knees.  Can't wait to see my onc next month to discuss - he wanted me to be on this drug for a few months before seeing me to evaluate SE's.

EleanorJ

I just changed my picture, it's 4 weeks worth of hair. Sorry for everyone that is taking a while to grow, altough mine is still very white and I'm so ready to have it shaped.

Firni, try www.lymphedivas.com for really nice looking sleeves, I keep waiting for them to make the sock version.

Texas357

I had 9 rounds of Taxotere which is what affected my nails. The ones that are growing out don't just have ridges -- they have BIG HUMPS. Parts of the "new" nail are still discolored. The nails that are still attached but loose are mostly white, although there are a few that are almost black.

I love the idea of all of us sticking around here to compare notes on our "next steps". I just had my 7th rad treatment. I'm a little tender but mostly the only side effect I'm having is that the TE is starting to feel tight and hard again. Where I was relatively even, now it's sitting higher on my chest so I'm lopsided.

In the greater scheme of things, no biggee.

Firni

Caroline, those Lymphediva sleeves and gauntlets are so fun.  I already ordered just plain ones, but I'm sure I'll need more than one of each.  Thanks.

I had 6 rounds of TC.  Now I've been taking Tamoxifen for about a week.  I've not noticed any SEs from that yet.  Maybe I'll be lucky and not have any. 

I was lucky enough to avoid rads.  

Texas, how long after rads can you have your exchange?  Hope you don't get too much more lopsided. 

I like it too that we're still here comparing notes.  The whole BC experience goes so much beyond chemo and rads.   

EleanorJ

It sure does. Even when this part is done, I don't think our lives are ever going to be back to "normal". Well, it will be a new normal.

You're welcome. FYI, lymphedema supplies are covered by insurance (they are with mine, I'm allowed to 6 pairs of socks/year). With the lymphedivas, you might have to file everything yourself, but still covered.

Texas, I hope you don't have too much SE from rads. I just got back from #24. I have one more regular than my 8 boost and I'm done

Texas357

Firni, I have to wait 6 months for my skin to recover before I can do the exchange. My PS insists that I can't do a straight exchange after radiation because there's too high of a likelihood that the skin won't be strong enough to support the implant on its own. So I have to have a lat dorsi flap procedure.

Firni

Caroline,  my wonderful insurance doesn't cover lymphedema supplies.  I guess one of the few who doesn't.  I guess I can't complain about it too much.  They paid for all but $2000 of my chemo.  I don't know what happened to the 80/20 co-pay, but they paid pretty much all of it.  20% of 16K every 3 weeks would have just devestated us.

Texas, 6 months seems like forever, but it will be worth it to have a good outcome.  From pictures I've seen, the lat flap gives great results.  Sometimes I wish I would have gone lat flaps with implants instead of just the implants.  I didn't have enough extra tissue to just do the flaps.  

It seems like quite a few of the Dec. Divas are finished or close to being finished with rads.  That went really fast. 

EleanorJ

Sounds like you have a maximum out-of-pocket expense. Sorry about the supplies

Radiations do go fast, still a pain to go to every day though.

Firni

I just got a call from my friend.  She's 82.  Her daughter is my age and had been diagnosed with  breast cancer 5 years ago.  She had surgery, chemo, the whole nine yards and was NED for two years.  Then she had a recurrence three years ago and has been battling ever since.  She's had such a hard fight and has been a great inspiration to me.  Well, the docs are giving her about a week yet to live.  She had mets to her liver and it has stopped functioning and her kidneys are failing.  My friend has her daughter at home with hospice and will take care of her until the end.  I don't even know how to comfort her.  This disease is so insidious and unfair.

Texas357

Actually, I'm thin and that's why my PS said the lat flap, tunneling the muscle from my back to front, is my only option. I don't have any fat for her to use from anywhere else.