Starting chemo August 2017 - would love some moral support!

SimplySammi11

Another question for you ladies. Heather's started getting bumps in different places on her head to me they look like infected follicles she's wanted me to get them out aka squeeze them and I am not comfortable doing that because I'm afraid it will get them infected. I did take a piece of a paper towel with some peroxide on it and riper over one area and it came out but the area seems a bit swollen now so I told her I won't do that to anymore.

Her face has also broken out in a few places and she's picked at an area that I'm now afraid it's infected.

Have any of you experienced this and did you get a special face wash the oncologist prescribes or a topical antibiotic that will help the scalp issues?

Just curious because I'm calling the cancer center tomorrow to ask for something for her before she gets a staph infection or something worse.

~Samma

PauletteK

Sammi - as I remember someone said we shouldn't pick on our face if we have acne because we don't want to have an open wound.

Cherry-sw

Thank you Sammi, I hope Heather's will go well too.

Cherry-sw

Sammy, I have many pimple on my face since I started chemo, they are infected and at first I did not touch it but then I squeezed everything and it got infected but I took a lot of hand disinfection on it and it heals but the new break in. They told me this it is caused by chemo. I want to ask them today at the center whether I can use the Neurogena face wash. I used Le Roche Posey face wash a couple of times, cannot say it became better but it help to dry the skin.

Clearpath

Sammi - Heather looks so beautiful- I am so sorry she needs to go through this at such a young age. You are an amazing source of support.

All - I was doing pretty well but the 4th AC has really depleted my energy. I'm hoping the Taxol (which I start on the 28th) won't knock me out so much. I barely left the house this weekend. Hopefully I'll perk up soon...trying to stay positive. Thanks to everyone for being there and providing support

salasila

SimplySammi11

I've gotten myself some acne too when I first started chemo - mainly around the forehead and neck areas. My MO told me not to pick on them so I just use very gentle cleanser for sensitive skin and a gentle moisturizer afterwards. I think around the 4th or 5th chemo, the zits started to go away.

SimplySammi11

Clearpath: Thank you. I'm sorry the 4th one got you so bad. I'm hoping you bounce back well.

Salasila and all: I called the oncologist today and they want to see Heather so we'll be going in tomorrow at 2:30 pm eat.

I've read some folks use different things that helped. Bought some Johnson & Johnson head to toe babywash and going to try to see if that helps some. Also have to convince her to stay away from makeup until the bad places heal anyway and we get something from the doctor that should help.

rljes

I know this is rather Last Minute - but I need some suggestions of what to ask my MO tomorrow.  Questions that the books don't tell.  He is suppose to discuss the outline of treatments. Anybody have any thing they asked that was helpful or wish they had asked? 

Thx rlj

Travel_Girl

Sammi -thanks for posting - I just wanted to mention, the first time I was dx w/ bc, I was 36, your daughter is even younger. If she isn't already, i would encourage her to visit/ be part of the young survival org. I know that it helped me a ton to be in a community with lots of younger people when I was younger and going through bc issues. They have a facebook page, etc.

They talk about all kind of things that other 30 year old care about with cancer on top of it - I hope she has some support directly -- just thought I would mention it. It was a my favorite resource and its how I found my awesome MO - that is making this second time as good as it can be. It really is another set of issues on top of bc - it helps to not be alone.

I hope it helps.

Cherry-sw

rljessu, depending on what you want to know. You stated you are Her2 which means adjuvant chemo with Herceptin. I know that because I am triple positive as you are, there is a great thread called TP group. What you probably want to know is how it will affect you, how they will follow up the treatment,if you will be getting any echo because Herceptin can be hard on the heart. Ask about the chemo regimen, whether you should eat or do not eat some things while on it. SE effects and how they will deal with those to prevent them like neuropathy and nail lifting. Good luck tomorrow.

Cherry

SusanGA

I'm so sorry about Heather's folliculitis. I think you are wise to leave them alone. Perhaps her MO can help with something. It is worth a call.

I have been nauseous all day but no more vomiting. Any thoughts. I just started to take the Compazine rather than the Zofran and I hope it helps. I also had. Glass of ginger tea. Does this last usually for the whole cycle. I am on day 4. It's slamming me

PauletteK

Susan are you on AC? Yes day 4 on AC usually was bad day for me I usually take Compazine instead of Zofran also.

Willow22

Susan, i'm on taxotere/cytoxan. Nausea is expected in days 1-5 of that regimen, with #2&3 usually the worst for me. I get long acting zofran (Aloxi) in my IV as a premed, so I was told to take compazine every 8 hours as needed for the first 48 hours, and I am usually in need of it about 8 to 10 hours apart. When the long acting zofran has worn off on the morning of day 3, I start zofran every 8 hours. If needed, I take compazine midway between zofran doses (i.e., zofran at 8am, if nauseated at all I will take compazine at noon, then zofran at 4pm). I have only needed to use the compazine supplement routinely on my day 3, with maybe 1 dose of compazine needed on day 4 and then I have felt well enough to stop the zofran after the morning dose on day 5.

Are you able to alternate the zofran with the compazine? That should help you get on top of the nausea today. If you do, make sure you are taking stool softners and staying hydrated since both meds can cause constipation. Check your materials or online to see how long nausea is expected for your regimen. Hope you feel better soon!

Willow

Willow22

oops, should have mentioned that unless you have side effects from zofran, that drug is the stronger anti-nausea med and will likely give you more relief than the compazine. My MO told me if the zofran Fran isn't enough on its own, to supplement with the compazine as above to handle the nausea.

MMO64

Hi, I was diagnosed July 5 after my yearly mammogram and had my first round on Aug 15. I wasn't prepared for the side effect and didn't have the right food or beverages. Round two was easier as they gave me meds for the bone pain. I am using the Dignitana Cap but have still lost half my hair, I was blessed with a lot so I'm thankful for that and that I still have eyebrows and eyelashes.

I am single and travel to Denver for treatments, my son and daughter in law live there and he was going to be my caregiver as he works 2 weeks on 1 off so I planned all my treatments for his week off, well last round they pushed me back a week as they didn't have me scheduled so now I have to do it in my own. I have friends who live very close but hate to ask for help.

Tonight I discovered a lump in my breast that wasn't there before, I wonder if it is from the chemo? Anyone else have that? I am grateful for this community and rely on it more than I thought.

SusanGA

thank you so much for your help with the nausea. I probably need to put the Zofran back in the picture. How about a stupid question. Is the day of infusion counted as day 1? If so I am almost through this.

MMO64 I pray that the lump is nothing but please check it out. Most definitely ask for help. Your friends want to be there for you.

MMO64

Thank you Susan, I will call first thing in the morning.

PauletteK

Susan - I call the infusion day as day 1, not sure the other.

One thing about zofran it causes constipation.

Travel_Girl

Susan -- my dr told me to stay ahead of the Nausea -- once you get it hard to pull it back, so you might have to suffer this round. You will conquer it next round. Compezine is a nice to have, should not be your main meds, go for the strong stuff .

Next round, my advice is to set your alarm -- just like Willow, i get the long lasting in my chemo pack -- then start Zophran day 3 (i have a zophran replacement as it gave me headaches) and I set my alarm and take it every 8 hours for 3-5 days - with comp every 4 hours alternating -- I don't wait -- I just take it ! I suggest you try that. It does cause constipation- so take care of that you will probably feel better next round. Ativan also helps with nausea, so on the first few days I take that to sleep and then drop it off, as I prefer having a 'clear' head -- I dont' like the fuzziness that it also gives. First few days, sleeping is more important to me, fuzzy head is not a bad trade off and I go for garbage movies/tv - my indulgence.

MO -- welcome to the group. My best advice is to make sure you have your next treatments scheduled and confirmed, etc. Do that the day before you have treatment, as you are probably going the day before with the dignicap for labs, etc. Ask for help, now is the time -- you will pay it forward when you feel better. Do you your research on these board and be prepared for any of the SE's -- and as above, don't let the nausea take hold - set you alarm -- I even set my alarm and wake up in the night to stay on the schedule - i haven't had any nausea and this round thankfully addresses the constipation issue.

I am not sure how far you live from Denver and have to drive for treatment or if you have a support system in your home town. The steriods they give you are pretty good -- so if you aren't comfortable asking friends, I might consider driving back home after your treatment -- the day of chemo for me is pretty good as is the morning of the second day -- its when that neustela kicks in that i want to sleep .... and I will take the drugs to sleep through it. (ie - ativan, etc). Load up your netflix, shop for foods, gear up for side effect and you can do this. (ie - milk of magnisum, immodium, etc - have it all just in case). Goodluck.

Leatherette

Sammi, I got a trial kit of dermalogica products called Clear Start,and they worked very well during my first round when I got acne. Actually, I only used one of the products, the matte moisturizer, and it was great. The kit is like 40$ at Ulta.

Hope the acne and follicles clear up soon! Maybe an antibiotic cream would help the follicles?

MO, second the advice to ask for help, particularly if you are specific about what you need. Friends want to help, but don't necessarily know what to do.

KByTheLake

I'm sorry to hear about everyone's side effects. Mine were complete different for round two. No side effects at all from the chemo this time! But the Nuelasta leg pain made up for it. This time was much easier to deal with because I didn't get hives from anything and I have an ample supply of lorazepam (Ativan). I stayed in bed for four days and just tried to sleep through it all. My appetite is really off (all I want to eat is dill pickles) and I have lost 18 pounds since the beginning of August

I feel better today but my stamina is still pretty low. Nevertheless, I did excited about my new wigs that just arrived! I love wigs! I may even keep my hair short after chemo and just rely on a fabulous wig collection! My blue one is here but needs some styling. But I already love my brunette bob!

PauletteK

K - I love that wig also I can't wear wig until the weather turns cold. I'm not much better on eating, salt seems to be bitter for me so I can't take much salt at all. Day 4 I lost my appetite today it finally came back some.

Travel_Girl

K - -can't wait to see the blue one! Fabulous.

Leatherette

K,

Nice wig, and glasses! My wig was feeling just fine for a while, but I think my skin has gotten more sensitive or something. I thought it would feel even more comfortable with cooler weather, but it is so itchy now that I can't stand it.

SimplySammi11

Travelgirl: thanks I'll let her know about that group. She's not online a lot but maybe if she found people she could relate to it would help her.

Leatherette: I'll have to check that Clear Start set out for her, thanks.

ALL: We went in to show her oncologist her follicle issues and the place she picked and got infected on the side of her face.

He examined her and she has a big swollen gland on her neck near her right ear. He's put her on Levaquin (strong antibiotic). I had been prescribed that a while back for upper respiratory infection and couldn't take it for more than 2 days because the side effects were horrible. I'm hoping it works for her without SE.

We have to keep on top of taking her fever at least every hour she's awake. We don't need the infection to get into her blood stream. That's been my worst nightmare.

My mom is finally finishing up her last 3 day rounds of chemo this week for her lung cancer. So that's pretty awesome. It had really zapped her RBC and platelets and she's had to have 2 blood transfusions so far. Hopefully she'll bounce back after this last treatment. Then she'll be getting around 10 I believe radiation treatments for preventive measures on her brain.

Wishing all you ladies well. Holding you up always.

Samm

MakeupLover

hi all,

Sammi, your daughter is just beautiful!

so my uti got worse over the weekend and my onc sent me to the ER, I had a fever of 102. They gave me antibiotics and fluids through my port and sent me home, since my blood counts were all good.

Im still taking oral antibiotics. I am much better now. As a result my third chemo had to be pushed back to next Monday, which sucks but what can you do.

In other news, I am now bald, and have my two wigs. Today is my first full day wearing it to work. Got tons of compliments from ppl that don't know I have cancer and compliments from those who know as well. I have to admit, wearing a wig takes some getting used to, I feel like everyone can tell it's fake hair lol. I'll eventually snap and share a selfie. Getting a blue wig seems cool, KbytheLake!

hang in there ladies!

marooshka

Hello all. I had a couple wigs I was trying out with mild success, but just received a free wig from http://fabys.org/request-a-wig.php and it is great! We don't have any participating salons in Colorado so they just sent me one, but I'm working on a couple salons here to see if they will sign up.

I agree MakeupLover, it takes getting used to. I went out in one yesterday in some crazy wind to meet with my daughter's teacher and felt half phoney with it blowing all in my face. But I reserve them mostly for those moments or running quick errands. I also have a giant straw hat I have been wearing on walks that I will put over a big scarf I tie at the nape. It is still pretty warm here most days but I am looking forward to winter hat days!

Sorry you ended up in the ER MakeupLover, but good you are on your way to recovery. I ended up there last round and have to say after the fluids etc. I woke up like a champ the next day. Luckily, I seem to have escaped anything this round.

SimplySammi what a champion you are! I can't imagine going through any of this without my family and friends.

Leatherette have you tried the bamboo beanie under the wig? I have one that is paired with a fuzzy strip that keeps the wig in place. Definitely makes it tighter/warmer but the thin bamboo ones alone really makes the wig more tolerable.

How is everyone caring for their scalp? When I went in to get a wig fitted/trimmed, she clipped my hair short and gave me an exfoliating and moisturizing treatment that felt amazing. She said my head was "pissed off" and needed to be specially cared for throughout. It is pretty red in spots and dry despite using my face exfoliant and lotion....I was trying to not buy the swanky Aveda scalp remedy, but that is what she had used and it felt and smelled so good....

Otherwise, my second round of TC was decent. I get really light headed around days 4/5 and the Zarxio shots do make me pretty achey, but that was about it. Makes me wonder how well it is working.

VL22

Hi all! Final AC tomorrow - happy in one way but felt so horrible after third infusion I'm really kind of dreading it. Ready to move on to weekly Taxol. I don't want any delays so I'm done before Christmas, but obviously I have no control.

I agree with wigs on windy days are tough! I wear mine less and less for running errands - just been going out in a baseball hat.

Leatherette

Marooska, yep-I have the bamboo cap and the strip that goes around, but the ends of the hairs that touch my face are what is itching. I think my face skin is just more sensitive now. Even before chemo, I am one of those people who has to cut every tag out of their clothes and can't wear anything with even the slightest bit of wool/hair. I was not expecting to even be able to wear a wig.

sunnyjay

For those that were asking about the Live Strong fitness program, it seems to be going well so far. I am not sure if this is common, but one of the trainers is working to be a certified trainer for cancer patients. Since I am at risk for lymphedema, I was looking for a trainer that has this certification. Last week, the first couple of sessions were orientation, and yesterday had our first actual workout. We did 15-20 minutes of cardio (bike or treadmill) and some strength training with circuit machines. Then one of our trainers put together a little obstacle course to train our balance which was a lot of fun. We have a great group of participants and trainers which makes the time fly. On the first day, they emphasized attendance to get the most out of the program, so even though I wasn't feeling great yesterday I still went and felt better afterwards. I was on day 6 after my infusion, and usually suffer from bone pain on days 5 & 6, but taking Aleve helped. So I was able to get through the workout with no pain to complain of. Each participant is at different stages, from some of us still in treatment to others that are years out of treatment.

Marooshka - I got my head shaved a couple of days ago as well, and I'm looking into getting a scalp treatment as well. It sounds amazing! So far I don't have any irritation, but my head sweats a lot so I do get buildup. I am using a wig gripper to hold my wig and headscarves in place. That is such a godsend! However, as much as I like the way the bamboo cap feels, it doesn't stay on. And the gripper moves with it. So I use a nylon wig cap with the gripper and haven't had any problems.