Starting Chemo, November 2013 Group

Veronica, inks, Amazon, Jab, ellen, lissy, quirky,bec, lisa167, smrlvr-

I CANNOT remember specifically who said what, so just to you all!-

My hair is the same more on top for sure and coming in on sides like a shadow of darkness...(in the best way possible darkness!)  and I am SOOOOOOOOOOOOOO happy to have any at all at this point!  Sure slower than I would like and I am using Biotin.  My dermatologist recommended Rogaine but to check with MO, and the nurse told me to 'do what I want, I have never heard of that' so I called her again and said 'can you ask the Dr?" and she never called me back!!!  I am switching MO's ...they have done too much of that throughout this whole thing.  The nurse thinks since I was a nurse she doesn't need to help me or call me back, but I do not know or did not know anything about cancer!!!  I can't wait to see new MO on the 2nd...

but my leg hair is returning slowly and my eyelashes have fallen out!  In clumps on right eye not left...and the bottom lashes are all out...very weird, and I use latisse since done with chemo! I would hate to see what happened if I didn't use it..

I had about 47 hot flashes last night!  OMG!  I am sticky and gross!  Going to do the elliptical instead of walking today as it's cold again outside.  At least I know the Tamoxifen is working, right? 

I bought flowers and planted them in pots out back by pool yesterday - it took me all day and I obviously used my 'affected arm' a little much as it was THROBBING in pain the whole night after.  They look SOOOOOO nice though and make me happy!  I LOVE flowers!  I also got to 9500 steps on my pedometer thing I have been wearing!  So I must've stepped a lot from pot to pot   Now this Texas weather just needs to stay in the same range for longer than a day and we could go outside and enjoy them...

I am seeing another LMP tomorrow at the recommendation of my PT that I have been seeing.  She thinks I have 'vein blockage or damage' from the port?  Have you heard of that happening?  She doesn't think I have 'lymphedema' so I will see what the new one says.  They also have a machine called HIVAMAT that apparently lifts your skin and penetrates deeper than t_{he PT can with lymph drainage...will let you know how that works...}

_{So happy for you to be done Amazon!  What a fabulous wonderful feeling!  All of us will be there soon!  There is definitely light at the end of the tunnel and we will all be there to shout hooray!!!}

_{Happy day everyone!}

Congratulations Amazon

Amazon, I love my RO.  I really feel like he takes care of me.  I was given my tamoxifen script, but was told not to take it until after I finish radiation.  As far as post Treatment scans, my MO told me the same thing.  No scans unless I have symptoms.  I don't know how I feel about that.  My RO told me today that he orders an MRI annually for,the chest, neck and upper abdomen area. So that made me feel better, but I see an Ativan/zanax moment in my future for next year when my MRI comes!

I have growing peach fuzz but it is white.  I can't wait to,have enough hair to open a box of loreal. Eyebrows and eyelashes continue to fall out.  Bottom lashes are almost gone.  The sick joke is that the hairs on my chin are starting to grow!  

Thanks everyone!

Yay Inks! Happy news!

Congratulations Amazon on last chemo!  I am so jealous you have your pic out!  Can't wait to say goodbye to my port.  And I Love your picture!  Beautiful lady!

Bec65  I have one eyelash that just won't leave.  Looks funny with just the one sticking-out, kinda like a unicorn.  I want to pull it but admire it too much for hanging in there all this time while the others deserted me.

Tonilee  good to see you posted on board!  Miss you!  Hope all is well!

I think my oncologist wants me to do a year on immunotherapy after rads for the Melanoma.  He said it would be harder then the chemo.  Lots of headaches and flu symptoms.  Just when I was seeing the light at end of my tunnel.  Not sure if I am going to do it.   Will only up my melanoma prognosis by two or three percent.  His point is since I have two cancers at once the melanoma might have a chance to spread rapidly since the BC treatment knocked down my immune system.  And that Melanoma is a bad  beast if it spreads.  So aggressive and fast.  I know if I don't do the Interferon and it comes back I will always regret it and blame myself.  But another year?  Of feeling sick all the time?  Hard to take right now.........

Pam 

pam: I think it will be a difficult decision to make as far as your immunotherapy, but try to consider the advantages down the road. The effort may be worth it, and you don't have to ever blame yourself for not trying.

Inks: Are you going to do the curcumin protocol? 

Bec, inks: Thanks for the info about the follow up scans, tests. It gives me an idea what to expect and ask for. 

My hair is slowly coming on the sides and the back of my head in a salt and pepper colour. The top is still shiny with more white duckling fuzz than black and my lashes and brows continue to thin. 

omg! I can't believe it! We all made it past chemo. For me it's been a month and I go for a walk daily but lately been tired to go like today. My port is sorts giving me an achy feeling so I just take it easy for today. I went to see wound specialist and said I was doing much better on my thumbs and between my stomach and thigh, so I got a strip of cloth especially made for places where you get hot easily My radiation was changed to April 9th and I will get herceptin on April 8th

omg! I can't believe it! We all made it past chemo. For me it's been a month and I go for a walk daily but lately been tired to go like today. My port is sorts giving me an achy feeling so I just take it easy for today. I went to see wound specialist and said I was doing much better on my thumbs and between my stomach and thigh, so I got a strip of cloth especially made for places where you get hot easily My radiation was changed to April 9th and I will get herceptin on April 8th

Hi All,

Congrats on being done with chemo Amazon! Oh, Pam, I'm so sorry about the recommended therapy. 

As for me: I'm stuck in parenting hell. My son in college said he was depressed, had thought he needed to come home, then said he was on meds and doing better. Well he didn't take the meds, flunked his classes, so now has to withdraw, etc. He's home on spring break, but I have to drive him down on Monday to move his things out and have him withdraw from housing. Ugh. I'd rather delegate this to his dad, but I can't make him take Monday off. I need this time to be about me and recuperating. I don't need this! I just want to be selfish right now. I know my son probably should have come home in February,  it I just couldn't face it. I just don't have energy anymore for anyone else. I don't know how those of you with younger children are doing this. Ok, yes I do. One foot in front of the other, and just do. Sorry I'm whining, but please Life, give me a break, ok?

My hair is growing in thick, evenly, and I think at least 90% dark. It's still too short to really wear topless. My husband says I've gone from looking like a cancer patient to now looking like a concentration camp survivor. Lovely. I've noticed the hair on my toes has been the most aggressive in growing extremely fast and long. My eyebrows are coming in, oh brother are they coming in. They're growing as if I'd never plucked them to death. They are going to be thick and hard to manage! My eyelashes are coming in too! I've still got a few long vestiges, but they're too few to wear mascara, and I'd just look freaky with 5 very long, unevenly spaced eyelashes!

My hormone therapy is going well, so far. I was so scared of it. I'm taking glucosamine/chondroitin to help my joints. So far, I've just got hot flashes, nothing new! I'm still battling neuropathy in my feet and muscles. Sometimes it's like a chemo flashback and there is a lot of pain. But now it's time to start exercising and getting some fitness back. I went to a garden show with a friend in her 70's. Was I embarrassed when she had to get a wheelchair to push me around because I've grown so weak I couldn't even walk much. I feel like I've transitioned to old age way before I was expecting it.

Pat and Bec, I greatly sympathize with child issues.  DD is depressed and wanting counseling which I'm working on. Love the child but I was absolutely worn out by the time spring break ended and she went back to school.    And yes, cancer SHOULD trump some of our child issues yet that never seems to happen.  Better days are ahead for all of us.

Quirky- I feel the same way! I want to get rid of everything cancer related! Im going to give back my wigs to the American cancer society ( only wore once) and give all my hats away as soon as I can.

Got a question: Anyone else been asked if they were in "remission"? I hate the term, since to me it applies to stage iv people doing well. I think of myself as "cured" until otherwise proved wrong.

Pat - I get that a lot at work from people. It kinda freaks me out! I just say that they got it all during surgery and I'm finished with chemo and "I'm OK now". Although it will be in the back of my mind, I am ok now and feel better each day!

Oh Jab, your daffodil story made me giggle, and that's something I haven't done much of this week.

I don't know what's going on with me, so I'll share it with you guys and see if anyone has any insight. Maybe just getting it off my chest (haha) will help, who knows.

I would not say that I've gone through this entire ordeal in a mentally "good" place. In fact, at the very beginning, right after my BMX, I fell completely apart, due to anxiety (I've had anxiety issues for most of my life anyway.) I was a complete basket case with one panic attack following another, and about all I could do was cry in between them. Spent an entire 3 day period unable to sleep more than 30 minutes at a time, no kidding; I'd start to fall asleep and panic and wake myself up. Klonipin fixed that: I take half a mg first thing in the morning, and another half a mg about 8 to 10 hours later, and I haven't had a single panic attack since I started that medication in November.

Since then, though, I've been mostly "okay." I definitely had my "weepy" days, and sometimes I'd start thinking too much about my IIIc diagnosis and what that means for me and the chances that I'm already stage IV anyway and just don't know it, and I'd get scared and depressed and cry. Or I'd get upset about my new "body image," such as it is: breastless and hairless and eyelashless, and worry that my 10-years-younger-than-me husband might decide that marrying me wasn't one of his best life choices after all. Or just bored and depressed because of not feeling like getting out and DOING anything much for so long.... well you all know all the things we can find to be disgruntled about. This BC thing is not fun.

But all of those things were definite THINGS, reasons, that I could point to for feeling depressed or upset, and generally, I could make myself feel better. A perusal of these forums shows many, many, women with diagnoses similar to mine who are still doing great years later, I could remind myself that Dr. Rockstar says that the odds are in my favor and he expects me to be just fine; I could cheer myself up about my diagnosis and feel okay again. My husband would (and does) show me that he still loves me and still simply sees me as ME, not as a breastless wonder with no hair, and I'd feel all better about that. I could distract myself with SOMETHING to alleviate the boredom-induced depression and forget I ever felt "down."

And on the days that were just "weepy," I could go ahead and just cry and I'd feel like my soul had been cleansed and I'd be tired and drowsy but no longer extremely emotional or even sad. I could just go to sleep, and I'd be okay.

This week my game has changed.

I've been waking up every single morning, starting on Monday, feeling fine for a little while, and then all of a sudden feeling like someone has kicked me in the gut. Sometimes I can cry, but it's not like before when a good cry would make it all feel better. I can't point at anything and say "THIS is why I am depressed." I have no idea why I'm depressed. I mean sure, I have plenty to be depressed about I guess, but....there's truly nothing specific. 

I don't know what's going on with me now, or why. I dunno if it's really anxiety ramping up again and if I need to up my dosage of klonipin. (Dr. Rockstar told me over a month ago that it was okay to double my dose if I needed to, but I decided not to because I don't want it to be any more difficult than necessary to wean off these things when the time comes.) 

I don't know if it's some sort of withdrawal because I spent about eleven days taking either hydrocodone and then (when those ran out) oxycodone, and then just suddenly stopped taking them---the timing is right; I stopped needing them for pain on Sunday, and Monday was when the depression or whatever it is set in. And ....I have noticed that the feeling goes away when I take a Tylenol-3 (with codeine) which I've taken a couple of this week because they do a nice job of taking care of burning/sore toes and the bottoms of my feet so that I can move around and do stuff without feeling like I'm walking on hot pavement, and helps some with my crampy, sore, heavy, generally uncomfortable thighs.

I don't know if it's just another wonderful taxotere side effect. 

Or if maybe it's because I DO have sore feet, sore toes, sore thighs, limp knee joints, constant indigestion, and almost no energy at all to speak of and the whole thing is getting me down.... I don't *think* so, but god, I don't even know what I'm feeling at this point, much less why.

Maybe it's because while I was on A/C my brain was in chemo fog, and then thru the two T/C treatments I felt great for the most part, and now I feel physically lousy but my brain is clear and everything that's happened to me, starting with the tests leading up to my diagnosis and leading all the way to now, is finally catching up with me...like maybe some kind of post traumatic stress syndrome or something. 

Maybe it's hormonal, an effect of chemopause. 

I just don't know. It FEELS more like a chemical thing than an emotional thing; just one that happens to manifest itself in an emotional way, if that makes sense. There's even a physical, kicked-in-the-gut feeling that I don't generally get with my normal sad or scared feelings.

I go for my last chemo on Monday and I should be all happy and glad to be nearly done with this awful phase of my life, and instead I'm "blah" at best, and crying my eyes out at worst, or feeling some anxiety about the "next" (rads) phase in between, and I've been like this since Monday morning, and it's all day every day--and night. At this point I wonder if I'd actually be fine if weren't EXPECTING to be depressed soon after I wake up in the mornings, like a self-fulfilling prophecy. Being depressed for a day I can handle. All week long...I'm about sick of this.

Anyway, I think I'm seeing the NP on Monday instead of Dr. Rockstar, and that might be a good thing, because she had breast cancer herself a year or two ago so it's easy to talk to her about this stuff--she gets it. I'm wondering if---if I'm not feeling better by then---if I should talk to her about getting onto an anti-depressant, or if I should just ride this out and hope that it resolves itself.  Bad part is that if it IS some withdrawal syndrome because of spending 11 days on painkillers, I'm just going to be right back in the same boat in a couple of weeks because I imagine the pain, and need for painkillers, is going to be just as bad this go-round. Oh well, I guess if that's the case, maybe the NP will at least have some advice for tapering off them instead of stopping abruptly like I did this go-round.

In other, less-depressing news, I went with my husband for a doctor's appointment of his own yesterday. He's been having some various problems, ranging from dizziness to a sore elbow to reflux bad enough to convince him he was having a heart attack....which gave him panic attacks, which of course led to reflux being even worse. Poor guy. Doctor gave him a pretty thorough going over and pronounced that the elbow is tennis elbow--or more specifically PS3 elbow from playing too much Battlefield 4, the dizziness is due to fluid in his middle ear, so he gets to take some steroids to see if that clears it and if not, physical therapy ---- something about desensitizing the crystals in his ear, which was a new one on me---and that it was no surprise that he was having panic attacks and reflux due to the extreme stress he's been under since I was diagnosed, so now hubby's on klonipin too for a while. I think it helped him as much as anything else to hear an actual doctor acknowledge how difficult his role in my BC treatment has been. He's going back for a complete physical in two weeks....which is going to wind up with him on cholesterol meds, but at least now he doesn't think he's possibly going to die at any moment. I think the dizziness in particular had him really worried.

As a result of that visit, I walked 8 blocks today, 4 blocks each way, to our local pharmacy, to pick up his prescriptions. I fear another blood transfusion is in my future based on how out of breath I was when I got back home again, but at least my crampy, heavy, oddly-squishy-feeling legs, and sore feet and toes held out and got me there and back home again safely. So that's a good thing.

Thank you Audra. I think you could be right... I HOPE you are right, especially since I only have one more treatment to go through. And, I guess it would make sense that it would hit me now, since my dose of Taxotere was much stronger this time since it was the only chemo drug in the mix.

Honestly too, I've probably made it even worse on myself; I have a history of allowing myself to become anxious ABOUT being anxious, so I have no doubt that I am also capable of being depressed about being depressed.

All I know is that I'll be glad when it's over!

lisa: Sorry you have been feeling down  and out of ordinary, but I believe that our bodies in a way dictate how we feel emotionally. I also found out that Oxycodone, which I am currently on, can do all sorts of weird things to you. I started to take it last night to take the pain down and as a result I had these wild, crazy dreams all throughout the night. It's an opioid and addictive, so it made me feel qiute depressed when I was trying to wean myself of it during my last chemo cycle.

I became a LOT more emotional just before my last chemo. I was struggling physically, which in turn had me struggling mentally as well.   

I am quite sure that all this chemo drudgery is doing it's job on our heads as well. I am convinced that once the SE's are behind us we will feel more like ourselves again. 

Please, hang in there. Thinking of you. 

(((Hugs)))

Wally: How are you doing?