April 2013 Chemo Group

Carol, do you have an allergy to latex?

I recall something about the needle having a latex thing...if allergic alert your doctor....I remember because my mom is allergic to latex, so when i read that I thought of her.

Pat

I was just going to post about the opposite...being freezing cold!! Ever since my BMX, I've been cold. It's gotten a lot worse since I shaved my head (I know we lose the majority of our body heat through our head and feet, but this is ridiculous). It's been in the 80s here and I have to wear a sweatshirt and socks in the house- we keep our house at 75! All the local ladies with breast cancer that I spend time with are all hot. At dinner the other night, all 11 of them were having hot flashes and I was cold! 

But then again, I'm the one who is growing hair instead of losing it so maybe I'm just some chemo annomaly!!! 

Jen987 - When I went through natural menopause three years ago I NEVER had hot flashes like I am having now.  I like the term chemopause but hate the SE - what causes these? Does anyone know?  I seem to wake up every morning about 5 AM dripping wet which worries me the chemo isn't working. I keep thinking about one of the symptoms of lymphoma is night sweats and convinced I have yet another cancer but that's just me worrying about another worse case scenario.

hushcat -- My husband came with me to my first AC. My MO wanted him there in case I had an allergic reaction and I needed a ride home. I was able to drive myself (30 minutes) to and from each of my other AC treatments.

My husband went to my first AC treatment with me. Then I went to the rest of them by myself. I enjoyed the time alone. I never felt bad during the infusions. Everyone is different, though:)

Thanks Katie! Ill give that a try.

I have another question for anyone that maybe able to answer.

I've developed a "rash" all over my upper chest, shoulders, neck and upper back. Slightly itchy, but looks like acne! I tend to get a little heat rash in these areas during the summer when I'm in the sun, but I've been staying out of the sun and its actually gotten worse all day long. Big very noticeable "pimples". Could this be from the chemo or steroids?

I'm going to have tons of questions for you ladies since you are all so far ahead of me with chemo.

Hope everyone has a great night 😃

Kerri

Kerri, I had that after my first treatment. It was awful! My MO put me on an antibiotic and it took care of it right away. It's definitely a SE of chemo or steroids. Thankfully I haven't had it since. Don't suffer, call your MO!
~Deirdre

Not great PETscan news...on my initial scan there was a 'hot spot' in my liver.  Less than 1 cm lesion.  Due to the size and location they weren't able to get a biopsy.  They didn't want to open me up at that time to do an invasive procedure as it would have pushed chemo off and no one thought that would be wise. 

Finished my 4 dose dense AC cycles a couple weeks ago and had another petscan earlier this week.  The spot in the liver is gone so the best educated guess is that it is/was cancer and the chemo took care of it.  Sigh!  So obviously bad in that they think it was cancer, but good that it's for the time being gone.  

The downside is that things are still murky.  Without the initial biopsy they just cannot know for sure if it was cancer.  So I may have mets and be stage 4 or not.  Likely it is.  My MO still wants to treat my breast cancer aggressively as if  we can obtain a cure.  Repeat scan and MRI after my 4 Taxol cycles could change surgery and radiation options.  If the spot would show up again in my liver they will be more aggressive in getting an answer.  More than the normal amount of scans and stuff to follow.

I was pretty much a mess yesterday, but am getting a grip today.  It certainly wasn't the news we wanted, but I've decided that I'm not going to live life feeling sorry for myself or not being as positive about things as I can.  I'm sure that could change as further diagnoses happen.  My kids graduate HS in 2, 6, and 10 years.  I think 10 years is not likely, but that is a darn good goal to have (realistic or not, we have no way of knowing right now).  

Hope I'm not too much of a downer, but needed to share today.  Thank you!

Oh and thank you Deirdre.. The acne rash is already looking better without intervention

Hushkat, I'm dose dense AC.  (I switch to T next week).  The only reason I've needed anyone with me for infusion was because I'm doing cold caps (still have my hair).  My infusion was only an hour total.  As long as you take your anti-naus meds, you can likely walk out of there under your own steam.

Random side note... I love having taste buds. I will never take them forgranted again. I cooked for perhaps the second time in 3 months?! Dinner was a massaged kale salad with chopped tomatoes, purple onions, red bell pepper, cucumber, avocado, corn, chives, and feta, dressed with olive oil, apple cider vinegar, lemon juice, and tons of minced garlic. It tasted amazing, my son & husband thought it was one of the best salads ever, and the best part was I COULD TASTE EVERY BIT OF IT.  

Amy: http://www.breastcancer.org/tips/menopausal/facing/hot_flashes This explains what causes the hot flashes and chemo-induced menopause is one cause listed.

Well I guess chemo messes with your horomones even more? Plus the steroids can cause hot flashes. And are you taking femara during chemo too?? I think anything that messes with your hormones could cause them. Try not to panic, if it's that common it's probably a "normal" side effect & not something worse (saying this as The Queen of Panic!) 

Anne and Daffyc, my thoughts are with you. Here's something to add some hope to your day. They are constantly doing research on new cancer drugs. I mentioned before the young man I know who just started working for a cancer research company looking for new targeted therapies. While he's just starting out, he's very smart and motivated: a good person to have on your team. 

Hushcat, I'm on the opposite end: just finishing AC (last round next week) and starting Taxol/herceptin. For me, I had relatively few problems with the AC, and am more worried about the TH coming up (especially the possibilities of allergic reaction).  For the last two infusions, I brought a bottle of iced water. I held it and sipped it through the chemo infusions. I haven't had as much mouth soreness or loss of taste since I started doing that. Can't say for certain if that's a direct cause/effect, but I'll continue doing it just in case. No nail problems so far either.

I had my DH at the first AC, but just went on my own for the others. My premeds were in the IV. They (or something else) made me sleepy during the treatment, but I was able to drive home with no problem. I had steroids in the premeds, which kept me from being sleepy as well. This would be a good question to ask your MO or the chemo nurses: will your premeds be sedating or not? The chemo nurses know exactly what you will be getting and how it will affect you; they are a great resource. 

I plan to have someone drive me to and from my first TH at least. For me, it's a long all-day of infusion, so I'm going to be cautious, at least for the first treatment. 

Today when I went in for my blood work the onco nurse told me that my MO is changing practices. What that means for me is that she is not seeing patients for the next month while she does so, and I will have to see a “substitute” oncologist for the next two treatments, then switch back to my original MO at a different treatment center for my infusions. Very bad time to have to do so, as I will be starting my new drugs for the second of those two chemos, so all the questions I have about it will have to be asked of the substitute MO, about whom I know almost nothing.

I’ll be meeting this new MO 15 minutes prior to my next infusion on Tuesday. I’ve actually met this person (a retired MO) once briefly in a non-medical situation. Unfortunately, during our brief interaction she did not impress me as someone I would want for my doctor, at least personality-wise. My impression of her was that she is a my-way-or-the-highway type; exactly the kind of person I will not do well with. It seems the only other options I have are switching to another MO in the same practice (and probably they are booked and I would still have to see the substitute until I could get on their schedule) or trying to switch to an entirely different practice (which would probably delay treatment). No good options as far as I can see.

I will try to focus on just getting through the chemo, but it sure is upsetting and disappointing to have this happen. I'm trying to put this in perspective as not the worst thing that could happen. Still, I chose my oncologist because I felt she was a good fit for the kind of MD I work well with. Now I'm stuck with a mystery MO at an important point in treatment. Plus, I'm now so angry with my regular MO (not exactly rational, but that's where I'm at at the moment) for abandoning me to a stranger, I can't even imagine seeing her for treatment in July and feeling good about it. (I'm feeling a rather teenagerish desire to punish her by not telling her any of my SE or asking any questions.) Hoping this will pass by then.

Thanks for hearing the rant. Any help with perspectivizing this appreciated. Will also accept sympathy and righteous indignation.