January 2013 chemo group

Jubby

Yay Mandy!!!!  So glad all is well with you.  I think about you often. Good luck for Tuesday when you kick chemo to the curb!!  Woot woot! xox 

LeeA

Mandy, it sounds like everything is going so much smoother for you.  Hooray!  Congratulations on being just about finished with chemo.  

Nicole503

MandyNJ ~ So glad to hear that your strength is back and that you are feeling better.  Wishing you a lot of fun and joy for the next 6 weeks before you have to head back to work. Good luck finding an RO you like!!!

hope49

Mandy, it's so good to hear from you and that you are doing well! All the best as you finish treatment and go back to work. I think you'll find rads very easy - that was my experience, I just wrapped up on Friday, and had no SEs at all. Keep us posted, and of course, we'd love to see you on FB if you ever want to come on over!

duckiedee

ablydec - I finished chemo on April 1st and have also had lots of problems with swollen feet and ankles for the past month or so! Never had any trouble with that during chemo. My MO prescribed a diuretic and potassium tablet. I have done 2 rounds of that (for 10 days each round) with minimal success. I guess it helps some but the swelling never fully goes away. And my legs look and feel like tree trunks. ugh...

I have done 20/33 radiation treatments thus far. My RO says the swelling is an after effect of chemo - not due to radiation. In fact, with any complaint I have, he just shrugs his shoulders as if to say that it just comes with the territory! Drives me crazy.. Now the skin under my arm is starting to blister and peel, and it is really tender and painful. Lots of itching too. The rad tech was concerned about the peeling today when I went for treatment, so I'll be curious to see if the RO does more than shrug his shoulders when he sees me for my checkup on Thursday.

Bottom line is - My MO and RO seem to be worlds apart on how they treat their patients.

I'd like to keep in touch with you gals through FB. How do I get friended? Can you post a name for me to contact - other than ski girl? You probably mentioned it before, but I didn't catch it. So sorry...

martha323

MandyNJ, So good to hear from you! Happy to hear that you're through with treatment and that you've been feeling better. Please keep in touch - if you look for Bryona Golding on FB and send her a private message she'll get you set up - as well as anyone else!

duckidee, I hope all of those SEs resolve very soon! If you look for Bryona Golding on FB and send her a private message she'll get you set up - as well as anyone else!

LeeA

duckiedee, looking forward to you joining us on Facebook!

cancernoway

My legs and feet hurt terribly and I'm three weeks out from chemo. They swell all the time and it is very irritating. My hands and fingers are so sore and my nails are bruised again and pulling up. I have them trimmed back as short as possible it doesn't really matter though, they still hurt. I haven't started radiation yet and I see my MO tomorrow and have Herceptin only Friday. I'm ready to not be in pain anymore. This is ridiculous.

LeeA

I hope you can get some relief soon, cancernoway.  

cancernoway

So I asked my mo how long I would feel like a 106 yr old woman and he says about a year. I sort of went off and bless his heart he just stood there and let me snap. After I went on my rant and could finally shut up I apologized to him and he says "you are fine, its goid to see you finally have a bit of a breakdown and get mad about something". I cracked up at this point and realized that you guys are the only ones I ever bitch too. Everyone else gets he smiling, everything is just fine, I got this Becki. It actually felt pretty good to go off for a minute. I'm still in pain and dealing with it but I'm told it will get better each month. And yes, I can go this, we all can!

ablydec

Cancernoway,

   We're glad to be here, that you can be "real" with someone.    I'm going with the idea that we are already through the worst of it, and it will just get easier now.  I was so happy to see that my blood counts (RBC) were much better, almost normal, that this itself gave me a boost of energy.   True, the nails are lousy, falling apart, and my fingers have neuropathy, but that is more irritating than anything else.

P.S. Anyone else starting to see the hint of hair returning?    

jayjayc

ablydec,



I HAVE HAIR....... I'm so excited to say that ....... I lost about 80% of my hair during weekly taxol.....and hair in places I didn't even really know I had it (toes, knuckles, etc.)



It started coming back about a month ago...5-6 weeks pfc...... I had started taking biotin and using nioxin as soon as chemo was over... now I have full coverage about 1/4" (but you can still see just a little skin at the crown)........ it's a lot more grey but who cares..... and it's also coming back in all the other places (legs, toes, underarms)...... those are all super fine hair with no color (I used to be a redhead so most body hair was clear or albino)....

ablydec

Me too!  I finished chemo about seven weeks ago, and SLOWLY it is starting to show.   So excited, I keep checking on it.  I had been wearing a snug headband under my wig, to keep everything in place.  I'm afraid now that a snug headband might interfere with the hair growing back  (at my hairline in front), but without it, the wig is so itchy!!!  (I only wear the wig for work; otherwise, a scarf.)  Does anyone know about this one?

ablydec

P.S.  Who else lost nails NOW, and how many got ruined? (For me, four destroyed so far.)

Skigirl72

two oneach hand feel like a hammer hit them. they have not lifted yet.... yet.

cancernoway

Every single nail I have has lifted but I haven't lost any yet I keep them trimmed back as far as I can. They bruised first and then pulled up. Very uncomfortable. My toes are ok except a couple are still numb. I had two nails that I thought weren't gonna lift and they decided to join the fun tyhree weeks after my last chemo. I was pissed.

klaudiak

none

ablydec

Great news, and I figured you folks are the ones to best share it with.  I had been battling with my insurance company for months over coverage for my reconstructive surgery.  (The PS was out of network, because my BS did not really know or recommend any of the names on the "in-network" list.  I knew I would have to pay a significant chunk of it, but imagine my surprise when, out of a total bill of 16K (12K if I pay right away), the insurance wrote a check of  - $265.00.  Thanks.)  I just had a meeting with the CEO of my company (we are actually "self-insured", meaning my company is the one who would ultimately write the check).  And just got word that it worked!  They agreed to cover me (at least the 60% that I feel they had "promised").  This is a HUGE weight off my shoulders!

cancernoway

Ablydec - That is great news!  So happy for you!!!!  What a relief that has to be off of your shoulders. 

LeeA

I'm bumping this thread for anyone who hasn't joined the January 2013 Facebook group, Ciao Bellas, but might still have this thread in their favorites.  

It's with a heavy heart that I bring the following news: 

One of our own, Oliverhog (Holly), was diagnosed with stage IV breast cancer in late July 2013.  She had Hodgkins in her twenties and a recurrence a few years later.  In addition, she has struggled with a lung disease that greatly restricted her breathing/endurance.  

It is with an even heavier heart that I write the following -

Oliverhog/Holly has been in the hospital for over a week now (closer to two weeks).  Her breathing became more and more difficult and she was admitted with pneumonia.  She's been on and off the ventilator a few times.  More tests were run in recent days and it turns out she has mets to her lungs, liver and lymph nodes.  She knew about the liver and lymph nodes (supraclavicular) but they were hoping the spots on her lung weren't mets.  Sadly, they are.

One of the gals in our Facebook group is in contact with her husband and he has asked us to pray for her because, as he wrote on his Facebook page, her time here is short.  She is on oxygen right now and her family is with her.  She has a sweet little boy who is just seven years old.  

Please include Oliverhog/Holly and her husband and young son in your thoughts and prayers tonight and in the days to come.  She is one of our true shining lights and she's done so much to help others who are facing this dreadful C word disease.

Editing to add: She was originally diagnosed in October 2012 with stage III breast cancer at the same time she was battling mycoplasma pneumonia.   

macyhen111

Praying for Holly!!! God Please Bless her and her Family. This news makes me so sad :-( !

Anonymous

Macy~~Thank you so much. I've never met Holly in person, but she has become very dear to me since connecting here in January. She has so much knowledge, wisdom, compassion, advice, & love to offer.



Her husband, Dan, updated us last night. The doctors have given her maybe 2 or 3 days. This disease makes me so ANGRY!



We will keep posting updates.



Bless you Macy

Paula

LeeA

Macy, it's good to see you!  If you want to join us on Facebook please contact Debbie Inzana or Bryona Golding (I think that's how it's done).  We have people from all months of chemo starts.  Some people have joined us from BCO and some people are with us as by way of other friends (i.e. people met at radiation, doctors' offices, work contacts, personal friends, etc.).  In any case, we would love to have you there with us!  

Anonymous

Macy~~I agree with LeeA. You'll love our CIAO BELLAS. It's totally private to everyone else on Facebook. Come join us!



Paula

macyhen111

Hey Lee and Paula. I'm doing great. I would love to join the the group but don't know how. I'm not very computer savvy so most things I have to be walked through. So if y'all can help me I would love it.

Skigirl72

Hi Macy- All you have to do is friend me on facebook. Debbie Inzana (Rochester, NY) and I'mm add you to the group! Nice to hear you are doing well...

hope49

Macy, let us know if you need more direction about Facebook...I had a hard time figuring it all out, but once you get setup, it's easy to join the group and we'd live to have you!

macyhen111

Thanks Hope I found it!!!

Anonymous

Macy....Cynthia...it's great to have you on board at CIAO BELLAS!



Paula

macyhen111

Thank you Paula.