Starting Chemo March 2015

I know. I have been thinking about her, too.

Oh, Mary. I think that delays in treatment are worse than all of my side effects put together. It's hard to get a setback when you are trying so hard to warrior through as fast as you are able. Much love! Your comment about the charm bracelet made me laugh though. I'm inspired to buy one too. It just feels right.

Trvler,

I take 8 mg of sublingual Zofran too, but it just wasn't touching my nausea this time. (I've whined about it several times here this week.) Finally, I started taking prednisone for a blistering rash on my hands last night, and it has made an unbelievable difference. I have had zero nausea today, and I have been able to eat small meals. Thank goodness! My doc called in a script for Zyprexa, but I haven't tried it yet. I'll hold off and see how I feel when the steroid wears off after my last dose on Tuesday. Zyprexa's SE's sound scary to me.

Indy: I am so glad you are feeling better. That nausea is the worst.

I started chemo the end of Feb/15, I've had 3 rounds so far and the 4th is tomorrow. I feel okay, no vomiting or nausea, I feel pretty good. Meds change tomorrow though and I'm a little apprehensive but so far so good. My main complaint is fatigue and some gross burping all the time but it could be much worse. I have lost all my bodily hair so far except for my eyebrows and eyelashes. I just pop a hat on and no one really knows if I'm just hiding a bad hair day or what. It's a difficult thing to look in the mirror when I take it off but it's a few months and then it'll grow back. My hair was down the middle of my back and quite thick , seems so strange but a small price to pay for getting this out of me and keeping it out for as long as possible.

ninja, I'm so sorry you have to deal with this! I don't blame you for being emotional!! Sometimes I can't believe the insensitivevity and careless attitude of some medical professionals. last week I sat in the waiting room for 40 minutes just to get my Nuelasta shot! So very frustrating! A think a letter is a great idea.

Indygal- beautiful pic! So glad you're feeling better.

Welcome TerryMarie- so sorry we meet this way. Good luck with the change up

Carrie37- I had mouth sores too. Take L-lysine 500 mg twice daily and keep baking soda and a glass in your bathroom. Every time you go in there for ANY reason swish 1tsp in tepid water. Swish swish spit. Rinse. Repeat. You will get relief. In a matter of days.

just got back from weekly bloodwork. Fantastic numbers. Baby whites ahead of last time's schedule. Liver enzymes still in line! Yay! Gout/uric acid still being kept at bay without the stupid meds that make my liner enz go up. It's all so inter-related! I'm doing the happy dance right now.

Hi lovely March ladies, I have a quick question for you. Do you drive yourself home from your chemo? Or will you? Today I saw the local MO in prepration for starting my chemo. This doctor said no. I didn't want to have to bother anyone to drive me to/from chemo. I'm just wondering if it's something I can fight (if I know that other do it). I wouldn't do the first one, but I thought I would be able to do the subsequent ones. Just curious what you all are doing.

Lynne

I had my bestie come with me the first time because I was nervous and I didn't know how I'd react. All went ok and I've driven myself 2 subsequent times. Everyone is different. That's the only given.

My SEs don't usually kick in until day 3-4.

Thanks Kbee. My MO told me that 4 rounds was the standard but there were people doing six. He felt if I tolerated things ok, which so far I am, he prefers 6. He wants to kick it to the curb the first time.

I know there are absolutely no guarantees in any of this. You can do everything right. Your team can do everything right. And for a certain % it recurs. And more unfortunately some goes to mets.

All any of us can do is what we are doing. Finding a good MO you are comfortable with- because this guy or gal is going to be a life partner in ways you never imagined. Doing your own research and challenging (politely) if you feel you should. Take responsibility for everything that goes in your body WITHOUT blaming yourself for what you think you may have done to earn/cause/deserve this. You don't. And you'll never figure it out.

Then for me, I've made a certain peace with death and decided to at least try to find, each day, some joy in the life I have. The one I have today. Including chemo and BMX pain and the rest of the shit sandwich. And nightmare roller coaster. Because this is what I have. This is my hand.

And when I'm down, and I know I've already said this once today, I reach out to all if you here. It's an honest place and a safe place. And I am grateful. You guys save me

Yes to Carolina bbq!I love it! I'd always been "meh" about Texas bbq (which is usually beef with a dark tangy sauce) vs Carolina (which is pork and more of a vinegar sauce). All due respect to my Texas sisters. At least based on what this California girl had a chance to sample during my years of excessive business travel (DEVIL on her shoulder says.......maybe all that radiation from flying caused the bc? STOP THAT Angel on the other shoulder says- it's not your fault!)

I guess you all have figured out I'm crazy

Sprite- I know you didn't ask me, but I would first make an appt with the first MO. Talk about it. They can then request medical records and handle it for you. You won't have to have a conversation at all. Remember. They work for you. Your comfort is primary. You may feel comfortable at a later date calling or writing a letter. Or not. But right now it's all about your comfort and confidence. Hope I'm not out of line jumping in here. Good luck. Thinking of you.

Katy - you are not out of line. I appreciate all feedback and your suggestion is perfect. I am going to call the first MO tomorrow and ask for an appointment.

Eheinrich - thanks for your input too!

That's why I love this group. I've been going back and forth all day thinking I'm being overly emotional or irrational but I do need to put myself first and do what I'm comfortable with. It helps to know that others have been through it and I'm not alone.

Ok, now I have a question about a new SE. Hoping it's not TMI. I don't have a running bloody nose but my nasal mucous is hard, dry and bloody and my sinuses feel dry. Anyone have any tips on dealing with this SE?

there was quite a discussion about this several days ago.

I remember Bekah, who is a physician's assistant gave the definitive answer:

April 2, 2015, paraphrased:

If only lubricstion is needed, coconut oil

If u have infection, Neosporin

If you have allergic/inflammatory issue, OTC hydrocortisone cream

But best is if u can just get away with lube, coconut oil rocks it and is useful for so many other things.

I have since become a convert to it, based on hers and Italychick's recommendations oh, and Slothabout uses (and now I do too) lavender infused coconut oil (available at Whole Foods and Amazon) and rub it on my buzzed head at night to condition my scalp and promote relaxation before sleep.

,

sprite, I second the saline spray. They have an atomized version at the pharmacy or grocery store that I love. And yes, you can rub coconut oil in your nose too.

As for the infected hair follicles, my MO gave me topical clyndamycin lotion to rub in my head. But if you don't get relief, go to a dermatologist. They also know how to deal with skin issues and chemo. Folliculitis can be related to chemo, but could also just be related to infected follicles because of the hair loss. I get them "downstairs" if I get too aggressive with waxing, hair removal, etc. Don't be afraid to use other doctors. I went to my primary physician for the prescriptions I wanted to have on hand, like Valium since my MO doesn't believe in pain killers, anti anxiety, sleep aids, etc. she told me take Melatonin which I haven't taken, but if I really need a sleep aid I want heavy drugs lol. Luckily I don't have to take anything, but trust me, I have a drug cabinet if I need it. You can also try coconut oil topically on your head, but you may need a prescription antibiotic if it is really bad. Coconut oil is counterintuitive. Because it is an oil, one would think it is greasy and makes things worse. But that is not the case. It contains natural anti fungal properties and antibiotic properties. And it washes out of stuff fine.

As for driving after chemo, I can totally drive. The only issue might be if they have to give you Benadryl and it knocks you out. It does the opposite to me.

I am also scheduled to do six rounds of chemo if I can take it because chemo and Herceptin are all I have since I had negative Er/Pr receptors. I will see how I am doing after four rounds, but so far, the only side effect I have had after two rounds is nasty mouth. I can exercise, work, do whatever I want basically.

I interviewed four MOs and went with the one I felt most comfortable with, so don't be afraid to change. Or meet with your current one and lay it on the line. It is your life after all.