Starting Chemo July 2012

Strideb- thinking of you and hoping for good results from the tratments you get for the skin cancers. {{{((hugs))}}}

I get my 6th and final chemo (i hope ) on Oct. 30. If I still have to have a Neulasta shot the next day, I will be a Halloween witch! How appropriate.

I am SO down and discouraged. I'm developing lymphedema in my right arm. LE is permanent, there's no cure, there's hardly any helpful treatment that I've read about. AND I didn't have any lymph nodes removed, just a sentinal lymph biopsy just before the mastectomy. I see a surgeon Friday (not the one who did my surgery...she's on "extended leave"...they won't say why or when she might return. I'm tempted to ask, "Is it for incompetance? or just for her general non-caring attitude?" Anyway, I WILL have many questions for the surgeon.

I KNOW...life is not fair, we ALL know that. But I'm really blue about this anyway. Nat

NatL12 - Virginiab is right. You can at least get some relief and have the swelling go down. Ask your doctor if you can get some physical therapy, which can help. The massage techniques can help a lot. I have developed a little bit of it but my PT is awesome and gave me some techniques which brought the little swelling I had down. I know it's discouraging but you can learn to live with it if you get some help.



Good luck.

It's good to hear you had an angel sent to help you Life.  It's bad enough just dealing with all of the health issues of BC, you shouldn't have to fear losing your home on top of it all.  
NatL, I've also been told I have LE, or not, or maybe we should send you for PT just to be sure.... (3 dr's, 3 diff opinions).  Was shown how to do the massages and so far I see no difference.  I have noticed the swelling in my ankles is not as bad as it was a few weeks ago, so I'm still leaning toward dr #3's opinion that it is a Taxotere effect and will work itself out.  So sorry you got stuck with a defective Dr.  I love my surgeon and will go so far as to say I'm looking forward to seeing her in December.  Her part of my treatment was BY FAR the easiest to deal with lol.  Chemo sucked the most out of me but this daily trip for radiation is just killing my spirit!  I don't know how some of the women who have much further to travel have done it!  They are stronger than I am.  20/36 today and on the verge of tears while I watch the machine rotate over my body and I swear just the sound of the machine turning on makes me ache.

Wow girls we are all getting really close to the finish line....we are truly survivors

NatL, I'm so sorry about your lymphedema diagnosis! Really hard to take after all you've already been through. But the good news is, getting prompt help with it makes it much easier to manage over time.

The medical professional trained to diagnose and deal with lymphedema is not your BS or onc, but a specially-trained lymphedema therapist (not just any PT or OT). Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Any doctor on your team can write you a referral.

Lots more information and plenty of support at http://www.StepUp-SpeakOut.org and on the Lymphedema board here. Do drop over and join us--lymphedma can feel so discouraging and lonely, but there are lots of caring women there anxious to help.

Gentle hugs,
Binney

Life - so good to hear your disability has kicked in. The whole process takes such a long time. It seems like having a resource person dedicated to helping patients get through all the paperwork, insurance and disability, would be a great assistance. 

Ann - I was wondering if you had a timeline for returning to work? As I recall you are an engineer(?). So far I have disability approved through February, but I also have another surgery to redo my reconstruction. I won't be doing that surgery until end of January or February. I certainly don't feel like going or thinking about work, but I know that at some level, by Feb., work will be part of the healing process, getting back on a schedule and trying to remember that I know something other the nuances of my new, unsolicited, cancer education. 

Sorry to hear about those SEs. I was starting to have numbness in toes and fingers. That was about 3 weeks ago. I had 2 treatments cancelled and my new Taxol dose decreased. My MO thought he might reduce my Taxol treatments from 12 to 8. At the time I didn't ask any questions because I was worried about the other things, low counts and numbness. Now I am worried about reducing the treatments. I know most people would ask if I am crazy, who wouldn't want to reduce their treatments? But you know how you get mentally set on a plan and with this cancer, any time the plan changes, the light bulbs start going off. So now that my counts have been good and the numbness has faded, I am sick worrying about changing anything. I will see MO again on Wednesday, so will find out more information. 

Prayers for everyone, take care!

Oh, and on top of everything else going on in my life, my sister was diagnosed yesterday with uterine cancer. She went through a bunch of testing when I was diagnosed and the end result is this. She doesn't know much yet (you know how that goes) but they did tell her they think they caught it early. Breaks my heart that she has to go through this. She lives in Minnesota so I can only by there by phone and Skype. Send her good thoughts, if you can.

Thank you all for being so understanding with my blue funk over the LE.  Last night my DH said to me, was I going the surgeon to "fix it". I gave him the straight scoop about LE. (I'm pretty sure I'd mentioned that before, but he often tunes me out.) His face fell...I could tell this really got to him, too.

So many of the SE's are probably temporary, though painful, inconvenient, and generally awful. but when one comes along that can't be "fixed", it's devastating. I actually don't miss my little right boob (I can hide that loss with a foob) as much as I miss having a right arm that is the same size as my left.

Helps to hear from some of you that PT can be helpful, and I will follow the links that have been suggested.

lifeonitside...Good news about getting assistance with disability. Hope the check gets here in time for your rent!!

PAEaglesfan...Here I was looking forward to changing from chemo to radiation.  Even though it takes an hour to get to the hospital, at least my DH won't have to spend so much of his life transporting me to and from.  I'll have to keep reminding myself of that advantage.

Good thoughts to you all.  Nat

mamabr, to answer your question I don't have a return date yet.  I noticed my MO put February as end of treatment on the forms, but I'll still be doing rads at that time.  One of my insurers won't cover part-time disability, so I need to wait until I'm up to full days before returning.  If I go back part time I actually lose income, plus it's just difficult to accomodate an unpredicable schedule with my work.

NatL, you just ignore my Wednesday whining... I think I was just having an all over "off" day that day.  We got home from work around 6ish and I just HAD to lay down for a quick nap and it ended up being a nap that stretched into the next morning.  My batteries must have been running low and that was the trouble. Felt much better yesterday morning and the girls who take care of me at the center are just so amazingly upbeat (even that early in the day!) that it's really hard to be down.  We celebrated Friday by using my iPod in the player and getting some good noisy rock going to drown out the machine.  You just can't be down in the dumps when you're listening to Pink and dancing around the table lol.

Congratulations roadwarrior!

Congrats roadwarrior and Happy Birthday!!!

Thank you Anne, Madelyn and CityFi for the well wishes  

Everyone is getting so close to the end of chemo!!

My last chemo tx should be Dec. 15th if all goes well!!

My 4 year old said to me yesterday "If you were a little girl and you were my friend, I wouldn't let anyone make fun of you for being bald."  So cute

Roadwarrior - Congratulations to you! I am curious to hear what the radiation oncologist says during the consult but hoping that as you said, it's nothing more than a conversation saying 'No rads' Please keep us posted as I am still awaiting more info about whether or not I should do the rads

Susan - I am glad the event was such a sucess but sorry to hear that you still aren't doing well with the side effects.

Any east coast dwellers around here besides myself and City?  This Hurricane Sandy / "Frankenstorm" is quite the story in NY. It's supposed to make landfall sometime tomorrow. While I am concerned about everyone's safety there is part of me that is saying:

"Hey Hurricane Sandy, B*tch, maybe you haven't heard but I am scheduled to have my last Taxol treatment tomorrow. If you go screwing this up for me..." Okay, I vented about the storm. Fingers crossed it is safe enough to go for treatment in the morning.

Thanks Madelyn for remembering me , I am lucky if I remember how to spell my name these days 

This is my first post in this thread, so *waves* to everyone, I will try to read and catch up.

Taxol #9 next week, lots of hair, long eyelashes mixed with stubs mixed with bald spaces. Actually, a few eyelashes look like wings LOL. No longer need a brow pencil, just a little powder.

#8 was by far the easiest, I cannot say why. But I do take L glutamine and I think it really works for me regarding little or no neuropathy. I cleared it with my MO as well , I listened to medical podcasts and read medical reports which confirmed it does help SOME people. For sure it does not hurt.

Sweet story, Janet.  

My DH keeps saying "wow, look at all that hair!" and I rush to the mirror to check but it's still a fuzz halo with barely a shadow of brown.  It's still encouraging that anything is growing at all though!

I'm off for Neupogen shot today, and going to ask about the neuropathy.  I'm taking B6 and B12 but ready to add the L glutamine and ice and ask for dosage reduction and whatever else-- I don't want to end up with permanent numb fingertips.