Starting Chemo March 2015

SpecialK

Dose reductions are done when SEs become too much - they are your normal dose reduced by a percentage.  Dosing is usually done by BSA or body surface area - that is why they weigh you each time you get chemo, your BSA changes with your weight.  If you are experiencing bad SEs your MO may reduce by 20% of that regular BSA based dosage.  Make sense?  Here is the info:

http://en.wikipedia.org/wiki/Body_surface_area

On the hand issue - hand/ foot syndrome is a known chemo SE, characterized by itching, rashy, blistered, peeling.  Here is more info: 

http://www.cancer.net/navigating-cancer-care/side-effects/hand-foot-syndrome-or-palmar-plantar-erythrodysesthesia

 

 

rleepac

So weird thing I noticed this morning...I have a pinkish/red mark on my right breast (the one that has cancer) at about the 1:00 position above the nipple. Not close to the confirmed cancer that has already been removed. It doesn't feel like anything and it's not warm. But it showed up this morning and is still there tonight. Usually little marks like that go away and I don't worry. But since this is the breast that starting to kill me, I just am a little concerne

My fingers are covering my nipple and you can just see the top of the areola.

It's never been there before. Any thoughts???

Italychick

sigh, just got back from doctor. The bee sting caused some cellulitis and oncologist wants me on an antibiotic and steroid cream. They told me to go to urgent care. Why couldn't they see me? Luckily my primary care doctor got me in. Damn bee!

shaz101

Bekah does it ever end! Do you have any simalr marks anywhere else? Do you have a breast care nurse you could ring? Sorry I can't be of any help. But I am thinking of you.

Theresa its not fair, you do everything right and your the perfect patient! I hope the cream works quickly. Are you still able to exercise? 

Italychick

Sharon, you know me, I won't stop exercising, no matter what level it is at. I react to bee stings normally, so the treatment may be overkill, but I figure an antibiotic is no big deal. I just really didn't need this. The oncologist office said they have had several women in recently with bee stings. Guess it is springtime.

Tried to take a picture, but not sure if it came out well. My primary doctor said don't panic, he isn't concerned.

rleepac

I go in 2 days to see the MO's NP and spa day so I'll ask then if it's still there. I'm hoping it's just a mark from a piece of clothing or seat belt and it will go away. What could possibly be growing or developing in this toxic environment they've created in my body?!?

My concern is that it is in the location of the 2nd 'suspicious mass' that was found on MRI. But shouldn't the chemo be killing it and not bringing it to life?

Blech....I just don't want to think about it right now. Where's my cat? It's cuddle time.

Bekah

Italychick

Bekah, just a thought, it could be related to your latest chemo round. Do you feel any more of the tingling?

I need a concierge MO who is at my beck and call. This crap of "oh, go to urgent care" when they are in the office isn't working for me. And I called this morning, and they made it a fire drill for me by waiting until 3:30 to call back. Meeting with main MO on Thursday, we are going to have a very blunt talk about access to doctors and nurse practitioners. I don't want some strange hack c+ average medical school doctor at urgent care prescribing for me. I'm actually kind of pissed off right now.

shaz101

Specialk thank you for the info. I'm glad I'm going to see someone who knows how to do it.I had an axillary clearance on the left side when my sentinel node came back positive and I don't know how many were removed (I think I buried my head in the sand during that stage, I was just happy they were clear) I have cording as well and she said she could help me with that. I do know I need to buy different bras so the straps don't leave any indents. 

Mysunshine you are very welcome to stay here. Posting in the 2 forums might help you stay on top of everything. I'm so sorry your in pain. I'm glad Katy has been able to give you some info regarding her experience.

shaz101

Bekah, maybe its shrinking it and its a little pissed off! Did they know what the mass is? I hope you're cuddling your cat now x

rleepac

The tingling was more of a pain - like fire ants and it was up in the armpit where the mass was removed. I do still get a little of that now and again but not much and not in this new location.

shaz101

I totally agree with you Theresa! I'm going to have to go through emergency here I think with these headaches before someone realizes that they are bad!!! And need to be addressed. When I had chemo the nurse asked me about any side effects, so I gave her my list. All I got was...your certainly being hit hard. No help at all, No suggestion I was a bit pissed off.

shaz101

Odd bekah, I was getting strong tingling in my cancer breast yesterday on and off for a few hours. Its gone now. My first thought was that I have micro invasions around the mass and the chemo is dealing with it. But I haven't noticed any redness, but I don't think I've really looked either.

DavisD

Thanks Special K. good info to have. I'm going to start taking some prednisone first thing in the am but for now I'm in a lot of pain. Too late to call anyone now. thanks all!

shaz101

I can see the lump Theresa ouch! Good on you for continuing on the exercise front. I went for a nice walk with mum on the beach yesterday.. I'll go for another on my way home. I live in the hills, which I love but its not great for a gentle walk. I really must get on the treadmill more. 

DavisD

Theresa-I'm glad you got someone to fricking check you out! That is ridiculous as much money as we pay to have this shit pumped into our bodies....the least they could do is get back with you within a couple hours and be KIND!  Im thinking of you tonight

Bekah-I'm not any help on this one. I'm feeling hopeful it won't be anything bad and you will know soon. Hang in there.

shaz101

Diane, I'm so sorry you're in so much pain. Don't they have a 24hr hotline you can call?

IndyGal35

I got that spiel too, Sharon. It felt like a pat on the head. There's nothing worse than feeling like they're marginalizing the awful side effects. If one more person tells me not to give in to the fatigue, I'm going to go postal.

BeatIt2015

Wishing Katy and Theresa and any of my spa-day chair-sisters good luck tomorrow.

I'm jacked up on steroids but have gotten so much done today!

I feel a little bit calmer on this night before round 2 than I did for round 1. I hope that means I'll sleep.

Wishing everyone peace and rest and NO SEs!!!!!

Carol

Jackbirdie

Eileen- so sorry about the reaction today. That must have been so scary! Glad you got something to eat and I wish you good rest tonight..

Beatit and Theresa, good luck in the chair tomorrow. I am on Thursday, 3 of 6. Getting pretty nervous and just noticed on the bloodwork I was so proud of last week just had added to it the LDH, which was low/ normal before and after last chemo it more than doubled. From what I can gather it's indicative of cell turnover and can mean cancer is growing or chemo is killing the cancer.

I am meeting with the head onc nurse before Thursday's infusion, so I'll ask her. Can't help worrying a bit about it, as it caught me so by surprise. It's probably nothing, but I'm not happy right now

Jackbirdie

Diane- so sorry about all the pain! Poor thing trying to respond to all the posts! You need to take it easy, gf.

And you too Indygal, I don't remember you mentioning that before. A new double decker shit sandwich.

And I hardly know what to say Bekah. That must be so scary, so nerve wracking. I'm thinking of you, hoping it disappears overnight or at the very least when you show them they tell you it's nothing. I can't think of anyone who needs a fresh new hell less than you! A big hug.

BeatIt2015

Bekah- I got a hard lump, slight pain and a large (2-inch) red spot near my incision about 14 days after Round 1/about 7 weeks after surgery (I freaked out and cried and imagined the worst). MO said it looked like an infection and gave me antibiotic but after 5 days no improvement so I went to BS and she said it looked like infection and used ultrasound to look at it. She started me on another antibiotic and the redness is gone and lump smaller after 2 days on new antibiotic. Sharing in case helpful.

shaz101

Katy, stay away from Dr google! Love ya to bits and I'm sending so much positive thoughts and gentle bear hugs to you xxx

Italychick

Diane, did you try making a bowl of ice water and soaking it? Also, maybe aloe Vera? I'm not sure. I have a few fingertips with what feels like burnt skin, but no pain. That area on your hand looks terribly painful. Did you try some topical steroid cream? I do the bowl of water with ice rather than an ice pack because my emergency nurse friend I know said ice water helps burns more. Just a thought

so-she-did

I had a rash on just my right hand in the same spot as you, Diane, last round of chemo about a week or more out from the infusion. It was tiny red bumps and itched like crazy. When i scratched it, it burned. It got a little worse before it got better but I was able to tame it with lotion. Thanks for sharing your picture of your beautiful children. It really touched my heart. No one should have to endure losing a child.

SpecialK - Thank you so much for all the information about drainage massage. I hadn't really looked into it much since I haven't had issues but I'll make sure to ask the therapist if she is certified if I do decide to do it. Now you have me nervous about a regular massage. Have you heard of it being a trigger for LE? I haven't run across anything about it. I'm not doing deep tissue or anything like that, just a nice relaxing massage to take out those stress knots in my shoulders, back, and neck. I had 3 SN biopsied and the BS said since they were in a good position down away from my arm I don't have a big risk of LE. I also had no fluid accumulation in the SNB pocket post surgery.

Bekah - I don't have anything to add about the red spot other than my hopes that it turns out fine.

Eileen - yikes! That had to be scary, especially since you were by yourself. I'm glad they got it under control quickly and you were able to continue.

Katy - I hope the change in your LDH is just a sign that cancer is getting its ass kicked.

I am hoping the SEs begin to wane tomorrow like they did last go round. Don't think I can take much more nausea, bone pain, and fatigue. The low grade nausea is new this time but at least the bone pain hasn't been as severe as last time. I've been keeping up with the pain meds much better this time but now I have the whole constipation thing going on and my hemorrhoids hate me. My husband is out of town this week so I've been doing all I can to keep up with my girls. Luckily they are pretty self-sufficient for being 5 and 8 and can feed themselves when needed. Good thing since this morning I was pretty much a lump on the couch with nausea while they were getting ready to catch the bus. The nausea was completely my fault. I just started taking doxycycline for folliculitis and, like an idiot popped one first thing this morning on an empty stomach, just like it says NOT to do. Chemo brain.... Oh, on that note, I only lost track of my phone once and my keys twice yesterday so the chemo fog is starting to lift! Who else had folliculitis? I can't remember. Did it go away fairly quickly? I bought a shampoo recommended for it as well (Selsun Blue dandruff shampoo) so I am hoping that the combination of the two takes care of it soon. It looks awful and is itchy.

Tomorrow I go the the LGFB at one of the hospitals in town. I'm bringing along a friend of mine who just had a preventative BMX because she has BRCA1 and also has another mutation called CHEK2 which put her into the 90% chance of BC. We are going to go whoop it up and play with makeup. I've never been a big makeup person so I'm looking forward to learning some basic makeup skills.

I, too, have been enjoying getting cards from my chemo angels. If you haven't signed up yet, it is worth doing. I have loved all the mail I have been getting. One of them has 3 dogs and sent me pics of them.

I have had the scalp pain some of you have been talking. Once with the first fall out of hair and again with the 2nd fall out. I lost my hair a little earlier than everyone else. It started falling out on day 12 and then did anther shed a day or two after my 2nd round. If you want to get rid of the stubble, put a little Neosporin (what I was using for folliculitis) or other sticky-ish lotion on your head and massage. A lot of the stubs just came right out. I was so much more comfortable after that. Now I have some stubs and a whole lot of bald.

Sorry I'm so long winded. When I finally have an opportunity (or feel well enough) to sit down and write I try to take advantage of it. I feel like I've been missing out on making friendships on this board since I'm often MIA. I think of you all often even if I am not writing often.

so-she-did

Tales of shopping while on steroids, by Amy.

• 1 booster car seat (will order another one if we like it)
• 1 expensive (to me) exfoliator
• 1 expensive (to me) sunscreen
• 4 new cushions for the patio chairs
• 1 chicken watering bucket with nipples
• 6 pack of skull caps
• 2 Stacking "vittles vaults" for dog and chicken food

SueH58

Sweet Katy - Notihng but love and hugs that your counts are fine and for your continue healing. You are so awesome!!!!

Jackbirdie

good job on the shopping Amy! A high bucks/per hour quotient! I don't feel as if you go MIA. Always glad to see you posting, too

Princess, WPMoon, Joanna, CSKonicki, there are a bunch that it seems are MIA well over a week now. I do worry. I would rather learn that there's a problem for them being on the boards, for example, it makes them think too much about cancer or that they become too unproductive with work and family life, but in the absence of such a communication, I start thinking the worst. I will continue to think good thoughts. But sure do miss them.

so-she-did

I think Princess said she had a deadline coming up and wouldn't be on much if I am remembering correctly.

slothabouttown

http://www.vodderschool.com/find_a_therapist

Above is a link to find certified MLD therapists in your area. I've had a lot of LN removed. I have truncal swelling which is improving like crazy with weekly MLD. I also wear a sleeve on one arm that is "at risk" and have been doing some specialized exercises. The way I understand it what's happening now could just be a reaction to surgery and not permanent LE. But like women on here have said it can develop any time. Trauma (and radiation) increase the risk. I also started some reiki and some scar massage, trying to get that Damn scar tissue softened up before radiation starts.

Getting ready for a spa day tomorrow, snacks are packed and I found one of my high school yearbooks I was thinking of taking along to give my chemo buddy a good laugh. There's bound to be plenty to chuckle about from back in 1982!

Thanks to everyone for sharing your sandwiches. I'm wide awake on a steroid high and catching up on today's posts. Hey, does anyone else sneeze a lot with the steroids on board? The first two rounds it scared me because I was afraid I was getting a cold but now I've pinned it down to my pre chemo steroid doses.

eheinrich

Interestingly the steroids don't seem to effect me like they do everyone else. I actually don't notice anything. I guess if I get to avoid some of the ickier SEs it is only fair that I don't get the fun-ish ones, but still.....