September 2013 Chemo Group

knightzoo

Congrats batcat!

Kbee-so glad your daughter is on the mend. Hoping this round treats you well.

I had my 8th taxol yesterday. Have had a headache and sore neck since I got home - worst I've felt right after infusion. Super glad I didn't get my flu shot Thursday. Ugh. We have my grandma's 90th bday party tonight and a showing for our house this afternoon.

I love all the Halloween pics and KBee, your wig pic is awesome. I finally gave up on the wig that ACS let me order from a catalogue, I love this one I bought so much better, it's like my real hair was before I cut it, but darker. And then a friend of mine asked her sister to loan me her wigs - and I left with EIGHT! Haha. Fun to play with, there are probably 2 or 3 I will wear out, the long does tend to get snarly. This picture was last weekend at the pink hockey event - the jersey says "CANCER Sucks" down the arms and we bought his, so that'll be fun to wear to future games. I'm 5'1" and my oldest son is 6'3" plus skates And yes, that's a mullet.

70charger

knightzzoo. LOVE this pic! Love the hair.

lighthouselady

knightzoo - You look fantastic!!! I would never know that's a wig, and you really look the picture of health! And holy cow your son is a big guy! LOL

mankatostate

knightzoo- I agree you'd never know that was a wig. Looks great!

KBeee

Knightzoo, you look fabulous!!!!!!!

kjsimpson

Love the pic and the wig, Knightlady! Handsome young man, too!

lighthouselady

So I keep getting a sore on my tongue in the exact same spot! It's the only mouth sore I've had throughout chemo....it appears about a week after an infusion. I'm wondering if maybe I have a sharp part of my tooth sticking out or something that irritates my tongue, and that's why it keeps showing up in the same place? Very annoying, and very painful.

Today was my son's last football game this season, and my daughter's fall softball season ended Monday (although she does have a tournament in November and one in December). Life will slow down drastically for us now, thank goodness. But that does mean everyone home every evening... so more cooking for me. LOL Booooo!

PeacockGirl

knightzoo, I agree you look GOOD! and that is a gorgeous wig! I actually put makeup on this morning to teach yoga (my lashes and brows are holding just fine, have feared using mascara as the removal of it might make my lashes fall out) and that helped immensely make me feel better....otherwise here lately I look more like a Cullen. (pasty vampire)....well with a lot less glitter in the sunlight. Seriously you make me want to find a nice wig. (I've just done knit caps or hats no wigs)

lighthouse, could that be a taste bud that's getting inflamed?

batcat, congrats! we are all pulling up the rear and will be where you are soon! loved your costume!

kbee, good to hear your daughter escaped the ER! wahoo!

oh and nobody tell my onocologist but I've taken up horseback riding again after 18 of not being in the saddle. It feels great to ride and be around the barn and horses again, takes my mind off my petty problems for a few hours each week. I'm pretty sure he'd tell me it would be off limits if I asked. So I won't be....telling him either. ~Nichole

Viji

What great pics ladies! KJ I hope you had a good day on your birthday. You are right, I am more looking forward to next year and hoping things will be better.

I think a selection of hats, scarves and wigs work well. Different looks for different occasions. Let's dress up ladies!

Have a good weekend everyone. At the chemo bar next Tuesday...cheers!

alfranco

Feeling jealous. You all look great. I am happy you are doing well. So far so good for me. I don't like to wear wigs I have stayed with the turbans and they sometimes get too hot for me. Make up I am afraid I would take away my whole face taking off the make up. Lol. Oh well, I may not look like me but at least on nonchemo weeks I feel like me.

batcatlady19

Knightzoo - love that jersey! My hubby plays inline hockey & he got some pink ribbon patches that I sewed on his jerseys.

Man, digestive issues have been killing me this round. Heartburn, sour stomach, & constipation (oh my). 24/7. OTC meds are starting to fail. So glad this is the last one.

KBeee

Peacock girl, love that you are riding. I am not sure MO would approve of everything I do either, but I need to live and be happy to get through these challeneging times. And those "iffy" activities are usually the ones that make me the happiest and pass the time the fastest. So be it. My surgical oncologist at my first appoitnment told me a lot of doctors were going to tell me to "not do this or not do that". He said that would not mesh with my personality well, and that as long as I used common sense, to go out, live life, have fun, and I'd kick cancer's butt, and be just fine. Of all of the doctors, he has been the one to kind of encourage me to push the limits a bit. He is down to earth, gets to know his patients, and encourages things like this. At my last appointment, he really encouraged me to stay as active as I could, including working in my kind of high risk job, as I felt able. He said that if you get injured, it may take longer to heal, but you likely won't get injured, and doing what makes you happy will make your body heal faster from the cancer and chemo. And he's right...wheer or not my MO always agrees! And so I just love your riding picture. I love to see us living our lives through this! It brought a smile to my face.

batcat, so glad you are done. Hope the digestive issues clear soon. Have a great rest of the weekend all; I am going to try to enjoy it before my side effects kick in...likely Sunday night or Monday (or maybe not at all...a girl can dream, can't she?)

LisaSp

batcatlady, congrats on reaching the finish line! Btw, I recommend the constipation thread on this site -- very good, helpful info. Remember hydrate, hydrate, hydrate! I'm told its still important for rads treatment as well. Great costume!

Mankatostate, (and batcatlady and anyone who is ready) join us on the Fall2013 Rads thread! Very upbeat, informative group. I've made it through my first week of rads and feel fine. It is easy but driving there and back everyday is time consuming.

Great photos all! Knightzoo, you look lovely and your son is impressive! KJ, happy birthday and beautiful family.KBeee, glad to hear your daughter is recovering. LHL, go for it. I think exercise is very important for all of us, I know my MO would be all for what you are doing!

Miss_Mama_Bear

Hello all! I want to thank you all for your kind words. I have been super depressed lately with all that is going on: no help, family not caring, doing all this on my own. I just found out that I am losing my son's nurse too. I hope they get a replacement quickly because there is no way I can take care of him on my own on chemo weeks. I can barely take care of him today (no nurse on Sundays) and I have chemo again on Wednesday. I haven't bounced back at all. I a feeling a bit better emotionally though. I have just accepted that this is how am feeling and there is nothing to be done about it at this point so I just better deal with it. It sucks barely being able to walk. The muscles in my arms are screaming just from typing this much. A trip to the store is agony and I am thinking I will likely be using an electric cart the next time. Gah I am 33 years old It makes me sad to think of not being able to keep up with my kids for the rest of my life. I just hope this is temporary. Thanks to whoever posted about the oncotype testing. I didnt think of that but I never had that done. I don't know why I am supposed to have 6 treatments instead of the usual 4. Something is going to have to change though, I don't think I will survive 3 more. I see my onc tomorrow so we will see. I haven't seen him in almost 6 weeks. I have just been seeing the PA. She said that this muscle weakness was hormonal because of the chemopause but after looking into it, I think it is another aspect of neuropathy. I don't want to quit chemo but I also don't want to end up permanently crippled. My sister that is coming down to help me for my mastectomy is in terrible shape herself and I am not entirely sure she can handle taking care of my kiddos. That is depressing too. Well I am off to church, or to try to! It is a lot of work getting everyone out and about. We also have a get together with a stay at home mom's group later. Hopefuly I am up to it, I have been sleeping a whole lot lately and I won't likely get a nap in. Hugs to all and I hope you are all feeling well.

SpecialK

mamastewart - I am guessing that your muscle weakness is a low hemoglobin, do you know what your latest CBC is for Hgb? This is very common and may actually get worse on the subsequent tx, but then will improve by about 6 weeks PFC. The reason you did not have an Oncotype Dx done is because you are Her2+ - chemo and Herceptin are pretty much a given with a 2cm mass, so it is unnecessary, and an unnecessary expense, and we always score high. You are most likely having 6 tx because it is standard with a Her2+ tumor. It has been predetermined during clinical trials that this is what is necessary for you as a triple pos, due to the aggressiveness of any errant cells. Chemo is less to treat the localized mass, even though you are receiving it neoadjuvently, than it is to treat systemically. I don't buy the hormonal deal with muscle weakness - I was surgically menopausal at 45 from a total hyst/ooph, never had any muscle weakness. Did have it during chemo when my Hgb dropped like a rock.

KBeee

Mamastewart, I do not buy the hormonal excuse for muscle weakness either. I have run marathons, and my legs feel like they did after my marathon now! Walking helps...the first mile is tough, but I usually feel better miles 2 and 3... but it returns a few hours after I am done. Perhaps you could mention to someone at your church that you could use some help. I know at our church, they are good about setting up meals for people, and helping out in any way possible when people are going through a health crisis. You have way more on your plate right now than most, so do not be afraid to ask for help. Most people really want to help...they just need to be guided in what ways would be most beneficial. I know I feel helpless when friends are going through a health crisis, and I am grateful when I am able to help. If not, perhaps they could steer you towards other resources.

kjsimpson

mamastewart.

Looks like you and I are on a similar treatment path. Same drugs (carboplatin, taxotere, and Herceptin). I'm having the same issues with muscle weakness. My doc says it is temporary. The PA calls it 'muscle mush' and assured me that once chemo ended then the muscle would return over time and exercise. It is very frustrating. I've been trying to get out and walk regularly, but the muscles just keep mushing.

alwaysgrowing

Does anyone know anything about hardening of the arteries as a chemo-therapy side effect? Is there anything that can be done to minimize this side effect in particular (because the implications of this may be long term)? Deep tissue massage of the legs comes to my mind? Certainly recommended diet should be maintained...but does anyone know of anything else? Just beginning this journey, and my personal research. Thank you. Blessings and best wishes to you all.

Miss_Mama_Bear

Thanks SpecialK. I was thinking that standard was 4 treatments not 6. Even the infusion nurse said last time "You've only got one more, right?" Geeze I wish! My hemoglobin was 11.4 last draw ( a week ago tomorrow). It was 10.3 a week prior but I feel much, much weaker now? It just seems to just be getting worse. So you don't think it is neuropathy? That is a relief and to know that it will go away after treatment KJ. I just don't know that I can stand it getting any worse in the meantime! KBee I couldn't walk a mile if my life depended on it right now. It takes all that I have to walk through the store on a small shopping trip. Sometimes I am gritting my teeth in pain during it. I wasn't in the best shape before but nothing to warrant this. When my muscles are burning my heart is pounding too like my body really thinks all this is a workout! It is so weird. I talked to someone at church today and maybe they can get me some help to get to church anyway. I haven't been going there long though and don't know anyone. I just can't deal with taking 63 pound boy and 50 pound wheelchair anymore. After we got home and I carried him inside if it had been literally one extra foot distance I would have dropped him. It just makes me so mad that I can't even take care of my own child anymore. It is helpful like today's sermon was about giving up and just when you are ready to give up then miracles happen. Funny because I was just saying that I am ready to give up on chemo. There is a lady I have been talking to who was stage 3 ovarian cancer and she just quit chemo and is relying solely on nutrition (she still had confirmed cancer) The thought of that is just really scary to me.

SpecialK

mamastewart - Your hemoglobin is not too bad, but many of the symptoms of low Hgb have a different effect for each of us - some have dizziness, lethargy, confusion at 10, others can go below 8 (the normally transfusable cut-off) and have no symptoms, so it is hard to say. Neuropathy symptoms are usually pins and needles, burning, pain and numbness, but I have not heard any say they had muscle weakness.

Here is some info from the NCI on chemo-induced peripheral neuropathy:

"It usually starts in the hands and/or feet and creeps up the arms and legs. Sometimes it feels like a tingling or numbness. Other times, it’s more of a shooting and/or burning pain or sensitivity to temperature. It can include sharp, stabbing pain, and it can make it difficult to perform normal day-to-day tasks like buttoning a shirt, sorting coins in a purse, or walking. An estimated 30 to 40 percent of cancer patients treated with chemotherapy experience these symptoms, a condition called chemotherapy-induced peripheral neuropathy (CIPN)."

kjsimpson

MamaStewart,

My friends know how fiercely independent I am. Several of them took me aside right after I was diagnosed and told me, in no uncertain terms, that they will not accept my trying to handle all this on my own and that I had better learn to graciously accept their help. They reminded me that there are times in life where we must be willing to accept help and this was such a time. I promised them that I would accept help as I needed it.

The week after chemo is when it is the worst for me right now. I can barely walk from the bedroom to the kitchen some days, let alone prepare a good meal or do the laundry. It is hard mentally, but I let my friends help. It gives them joy to be helping in some way and it is a great relief for me.

Moral to all this... don't take this all on yourself. Your friends are there for you. Make sure you are letting them. ;-)

I couldn't imagine doing this AND taking care of a disabled or chronically ill child/spouse. You are an amazing woman!

Miss_Mama_Bear

I read this on mayoclinic.com: "...symptoms vary depending on what nerves are affected...muscle weakness or paralysis if motor nerves are affected..." I will just hope that it is not neuropathy or that it is temporary whatever it is!

KJ that is my mentality as well but the sad thing is that I really don't HAVE anyone to help me. The life of a special needs parent often includes a very restricted social life. He is 8, so I have been living that lifestyle for quite awhile lol. Friends tend to disappear when you can't ever go out and do anything. I don't work so I don't get any socialization there and we just moved here 2 years ago so that limits me even more. I have family and friends that would love to help me out but they are all about 700 miles away. I only have a few close friends/family here and they are pretty much all unwilling to help out. There are a couple people that are just acquaintances that have offered with cleaning my house and stuff, but that makes me a little worried with my kids involved. I am a very over protective parent. I am just so very thankful that my son hasn't ended up in Intensive Care (knocking on wood!!!) It is usually at least a once a year thing. Not sure what I would do if he did this year. I am supposed to be the caretaker, I am not allowed to be sick!!

kjsimpson

MamaStewart,

If it is alright with you, then, we can work on praying that doors are opened for you to get the help you need and make new friends along the way. I wish there was more that I could do.

If you lived in the Pacific NW, I would suggest you call Gloria's Angels (see link below). They gave me a brochure during my last chemo session. They help coordinate your networks of friends and associates into a force of angels to help with whatever you need. I'm very blessed to be a long time resident of my community with many great friends and older children (22 and 18) to help too, so I didn't need their assistance. But, perhaps there is a similar organization in your area...

http://gloriasangels.org/portal/index.php?option=com_frontpage&Itemid=1

kjsimpson

Does anyone have a cure for this incessant eye tick that started about three weeks ago and is driving me nuts???

lighthouselady

I don't even want to talk about eyes!!! Mine are driving me crazy. They water all the time, I wake up and they are crusty and stuck closed pretty much and my eyelids are so puffy. Ugh. Kind of makes it hard to use makeup to my advantage when it won't even stay in place!!!!

knightzoo

This is an interesting study...though not real scientific.

http://www.medicalnewstoday.com/articles/255497.php

knightzoo

LHL-on your mouth, when I got my big blister, it took weeks to heal completely and each infusion set me back a step. So I can see how you would be having problems with the same spot

mamastewart-I've read that chemo is really hard on muscles - maybe try to up your protein intake - have you added glutamine?. Hang in there, I'm praying that you are able to persevere and that some help finds it's way to you. Be gentle on yourself.

Eyes, mine seem to getting progressively more irritated and dry as well. No twitching yet but I can see how incredibly annoying that would be. I have noticed my up close vision is getting worse, wonder if that will go back to before or not, I'm kind of behind my friends in that I didn't need readers before, so who knows if this would've happened anyway?!

mankatostate

Great question Kj I have that too! My eyes are stinging a lot too! I heard or read some where eye drops but that doesn't really seem to be helping me.

Thanks for the invite to the Rads page Lisa...I am sure I will pop over there as soon as I start and have questions. I have been reading some posts already. I wondered if there might be a winter rad group starting so that is part of the reason I haven't posted yet.

SpecialK

kj - there is no stopping the eye twitching - that is a Taxotere SE and will eventually go away after you are finished with chemo - but it could take a couple of months.

mamastewart - there is help with housework from these folks:

http://www.cleaningforareason.org/

Here are some other resources as well:

kjsimpson

Uggg, thanks, SpecialK. Guess I'm going to be called Twitchy for awhile. It is extremely annoying, especially when I'm talking to people.