Anyone.Starting Chemo in October 2016?

Hi Nancie - Glad that the steroids are helping a bit. I know that they make us feel crazy, but they do have their benefits. Do you have Ativan? When I'm taking steroids, I have to take Ativan to get to sleep ... it works for me. You do what you have to do!!!

Thanks for the Taxol SE list ... it's reassuring to hear that the neuropathy was mild. That's my big fear. For AC, don't worry until you have something to worry about! I know that some people have difficulties, but my experience with AC has been very manageable ... I had some nausea after the first treatment, but they gave me better anti-nausea meds and I haven't have any problems since. No nausea, no vomiting. Energy levels down a bit, but I was still able to swim twice a week, work out at the gym twice a week, and go to yoga class on Fridays (although never on a chemo day or the day after ... I let my body have a recovery period).

I'm grateful that today was my last AC chemo, and I'm grateful that they used my lovely new port (my left arm was needle-free ... yahoo!), and I'm very grateful that my DH chauffeured me to and from my appointment, as the roads are covered in fresh snow today. There's lots more on my list, but I'll save a few for my next post!

So I had a big discussion with my MO today ... I'm still upset that I didn't have clean margins after a lumpectomy, then a re-excision surgery. They decided that I needed to move ahead with chemo (since I had 2 positive nodes) without delay, and I get it . The plan is that I'll get extra boosts of radiation to target the area where any remaining cells would be. The thing is ... when I met my radiologist, he clearly felt that it would have been better to remove any remaining cancer surgically. He said that the boost would be fine for "mopping up the area", but I felt uneasy.

So I've been reading up on side effects and after-effects of radiation, and now I'm even more uneasy. Skin damage (fibrosis) and lung damage seem to increase with the amount and intensity of radiation received. I'm considering having another surgery after chemo, to either remove more tissue from my (puny, deflated-looking) breast, or possibly even remove the breast. Or maybe both breasts (à la Angelina Jolie)! I don't know what to do. I'm going to book an appointment with my breast surgeon to get her opinion on it, but I think that it's best to have surgery before radiation as the skin heals better. I guess that I would still need some amount of radiation after a surgery (due to the positive nodes), but it would be less overall, and less targeted, and less likely to impact my lungs. Anyone have any thoughts?

Kate - I'm feeling like my plan is moving closer to yours (except for the ovaries etc. ... I had a total hysterectomy in 2012 ... done and done!).

Alla - Thanks for providing such detailed information about your Taxol experiences. Very good to know for those of us who will be starting Taxol soon. You are such a warrior ... your strength inspires me.

Dee - I hate cancer too!!! (((hugs)))

I am so grateful for all of you!

Barb

Good morning!

Lots of fresh snow here today ... lovely to look at, and challenging to navigate! Oh well, it's December in Montreal ... I can't pretend to be surprised.

I called my breast surgeon yesterday and was very happy to get an appointment with her next Tuesday! I'm doing my research and making my list of questions about whether I should have another re-excision or mastectomy before I start radiation. I hate being in this gray zone of indecision! Once I have a plan, I'll be ok.

Aside from that, I'm feeling fine after AC chemo #4! A mild headache yesterday, but today I feel well. Did some grocery shopping and errands this morning, and I'm going out for a walk in the snow with my son in a few minutes.

I heard from Connie ... she's home from the hospital, but they still don't know what is causing her fever. Hoping she is resting at home, and regaining her strength! (((Connie)))

That's it for now. Have a nice day!

Barb

Hey Lidabit!

Just started another round of Neupogen shots ... I will forever think of you when I have to inject something into my belly! LOL!! Actually, I just remember your kindness in walking me through the steps, and it calms me right down each time. Seriously! So, to follow the gratitude theme that's been running here lately, today I am grateful to you!

Hope that all is well with you.

Best wishes, Barb

Hey Dee,

You're going to do fine tomorrow. The worst is not knowing what to expect! I'm only starting Taxol on Jan 2, but I'm hoping and expecting that it will be an easier go than the AC (judging from those who have gone before us). I was told that my Taxol infusion will take about 2 hours. Do you get anything else along with the Taxol?

I'll be thinking of you and sending positive energy, and waiting to hear all about it!.

Barb

p.s. I'm a big exercise fan, and am convinced that it really keeps the SEs at bay. My theory is that it will be even more important during Taxol ... the exercise keeps our blood oxygenated and circulating through all of the little capillaries in our fingers and toes, and helps to prevent neuropathy. At least that's how I like to think of it. All the best!

I'm nervous, too, Dee, because I've read of some people having dramatic allergic reactions. I've also been told the first one will take longer because they will take it extra slow and I know I'll get Benadryl. I had such a difficult time with AC that I'm thrilled that's over, but I'm very worried about the possibility of neuropathy and nail loss with Taxol.

Wow, Luwusu...you are so close to finished. Woo Hoo!

Barb, you're undoubtedly a pro at those shots by now.

Lyn

Rachel - Way to go, lady. You're just zooming along. Love it !! Plus that is some tasty looking Pho ... yum. Like I always say, keep on doing what you're doing, because it sure seems to be working!

Best wishes, Barb

Barb, my MO said 100mg of B6 only and 400 units of Vitamin E. She also said no to Glutamine and Creatinine. I read that doctors aren't fans of supplements, because they mask SEs that they need to know about.

Had some lovely hot flashes myself last night. This is the week I should start my period. I think my ovaries have officially given me the finger. When it first came on, I swore I had a terrible fever. Took my temp and it was 97.3. I'm only 39, so this is the first I've experienced these. Fun!! My mom had terrible menopause and her famous words were "they're not hot flashes, they're power surges."

Pecker is up and I'm ready to rock today!!

hey all,

Elizabeth here. Barb- thank you for your kind words. They warm my heart. I am a nurse and not being able to work right now is tough. I miss taking care of patients so it was nice to hear I could take care of you.

I hit my half way mark (3 of 6 done). Such a relief. The last 2 weeks have been tough emotionally. I think everything is finally starting to sink in which is a little funny because it has been over 3 months now, but I just think I spent so much energy making decisions before this started and going to doctor's appointments, and then the first 2 cycles were so tough that it took all my energy just to get through them.

Now I just feel a little lonely. I live by myself and I am getting sick of staring at my own walls. I am feeling (relatively) good, but the big D really prevents me from going out. I never know when it is going to hit. I keep reminding myself that if this is the worst that happens then I will be okay, but I think now I know what happens at each cycle I start to dread the next one. I just keep telling myself, just keep swimming. Almost there. Well, almost to the surgery portion of the journey anyways. In better news, I finally received my wig. I found a place here that will make a wig from your own hair! I chopped it all off right before this started and finally got it last week. Putting it on felt like coming home. It isn't itchy like my other wig and I can fix it just like I used to fix my own hair. Since I have wavy hair, none of the wigs got it quite right. Never in a million years did I think that I would be glad to have my frizzy, bulky hair back, but man did it help!

Anyways, to the ladies with questions about taxol- I am on CTHP but my side effects have been as follows:

Dry mouth like skin sticking together. I use xylitol mints that stick to your gums and they have helped.

Metallic taste in the mouth- I keep life savers on me which helps and try to avoid food cooked in metal when it is really bad

Neuropathy - usually only for a day or 2. I don't ice. Usually I experience some numbness for a day or two. Pretty tolerable.

Bloody crust dry nose that drips clear snot- Saline spray and Vaseline helps, but by no means gets rid of it. I have also tried a humidifier, but I don't think it helps. I always keep tissues on me for the nose drip

Hot flashes and night sweats - usually the first few days after the infusion and then it goes away. I have found it helps to use 100% cotton pajamas and multiple blankets for layers. I also find sleeping with a hooded sweatshirt helps prevent the sheets from getting soaking wet from my sweat which prevents the post hot flash chill

DIARRHEA. I don't think it has ever been normal since this process started. I usually have 1-2 instances a day or every other day. I just take a lot of immodium. You can take more than 4 a day but talk to your doctor. No real solution here. But make sure you supplement with pedialyte or Gatorade. There is an organic Gatorade that I like a lot. You can find it at a regular grocery store and it literally is called Gatorade organic. I also use coconut water sometimes, but right after chemo it makes me nauseous.

Dry skin- I use udderly smooth cream. I try to slather it on my hands before bed and then put on a pair of gloves. I find this makes my hands feel normal For a couple of hours in the morning.

Changes in taste - anything from metallic taste in the mouth, to decreased taste, to extreme sensitivity to spicy foods. I can't wait to have this go away. This is the worst about a week after chemo. It leads to decreased appetite. I supplement with ensure plus which is actually pretty yummy.

Fatigue- I just try and honor my body's needs.

Emotional - par for the course due to the chemical menopause- or maybe due to the fact that I have cancer who knows.

Nausea hasn't been so bad. I take zofran during the day and compazine at night around the clock for the first week and then start to space it out until I can cut it out entirely. At first I only took zofran, but it caused a headache that I had for about 3 weeks that wouldn't go away. When I switched to taking zpfran only during the day and compazine at night, the headache went away.

Body aches- I am on neupogen injections starting the day after chemo for 1 week which causes body aches. You don't have take neulasta or neupogen. The risk of your WBCS dropping is actually quite low, but I was hospitalized with a neutropenic fever so we added it on cycle 2. I take Claritin every day. When I am on the neupogen, I take Tylenol around the clock - 1000 mg every 8 hours for about a week and then I slowly taper off.

I know this is a lot of information. Nothing is intolerable and I mostly feel like myself except for the fatigue, but I wanted to spell out everything. ( I am not type A or anything 😋)

Okay enough babbling. We are getting through this ladies! One cycle at a time.

Hi ladies,

Just wanted to report that my 1st taxol went good ( hope I don't jinx myself) I got all my pre meds there and Benadryl was one of them which knocked me out most of the treatment. It was slowly introduced to me and then gradually to the speed is suppose to go. I was told the 2nd treatment will be handled the same way and then 3 and fourth will be at the normal speed. I had a bit of an emotional break down another Lady there finished her treatment and was walked to the "Victory bell" where you the victorious one rings it 3 times. While I clap and was genuinely happy for her.. I sobbed hoping it was me ringing that darn bell. I know we're all strong and as OI often tell others on here this too shall pass, I'm quiet over it ALL I want my life back to normal whatever that will be.

I had my mom make beef broth soup from organic beef bone with some veggies and OMG was it good and revival i felt like a champ can't wait to have some for lunch.

Yikes on the allergic response, Barb! My oncologist agreed with B6 and glutamine, but it's cautious on supplements and vitamins in general.

Agreed on how gorgeous you look, Elizabeth. Thanks for sharing the detailed info. Very helpful.

I'm fighting the blues today. My eyelid infection got much worse last night so at eye specialist. I think Taxol will be delayed yet again. I'm now about 6 weeks behind my planned chemo and keep thinking about the cancer cells racing through my body to hide. I'm pretty resilient, but BLAST!!!!!

Lyn

Thanks for the encouragement, Barb. It's only been a week that I've been dealing with the alien in my eyelid, but it definitely feels longer. I'll start a topical steroidal antibiotic ointment tomorrow plus have the eye cootie drained Monday afternoon.

On another topic, based on the experience of others, I fully expected to have some dry skin issues. I've still been surprised at how the parts of my body that have always been super soft and smooth, like my upper chest, feel dry and leathery. It's not just that it's dry. It's like the texture is completely different. When I was washing my face in the shower this morning, it didn't even feel like "me" any more. Anyone else? With the seroma & eyelid infection, my skin seems extremely vulnerable to all the cancering stuff. It's weird how differently we each react, whether headaches, tummy issues, respiratory crud, skin problems, etc.

Lyn

Lyn, my MO suggested using Udderly Smooth on dry skin, especially with neoropathy issues. I have also been using Aquaphor (I use the generic) since I started my first chemo. Overall, chemo really dries us out, my bones even creak more, so I try to drink between 8-10 cups of water daily. You can include non caffeinated tea in that amount.

Hope that helps

Hi ladies,

My #3 Taxol went well. Well meaning I'm feeling fine and no SE yet and not feeling drugged. Way way better then AC. BUT oh theres always a but. I am learning now and I should of had been warned before from past comments from you guys here that we really need to be our own advocates and we need to speak up and learn all the drugs that we are supposed to take. Because nurses make mistakes. In the beginning I always had a problem when I was getting my blood drawn I always want them to take blood from my arm not my finger. The nurses some of them don't care what you want and that you have a port. I make a stink about it and they call upstairs and I get denied because my doctor doesn't remember that I have a port. Finally I made my doc write a note on the chart and now I don't have a problem when I get my blood drawn. yesterday when I was getting my taxol and I went over with my nurse the drugs I was getting administered there was a note written by hand that I was getting a nuelasta shot afterwords and I had to come in on sunday to get it. Well that set me off I got so upset because I was not supposed to get that. I made them call and find out what happened because right before I went into the infusion room I met with my Onco and she never mentioned I need it and that my blood work was still very good. Anyway long story short they called and found out that someone downstairs wrote it in by mistake. sorry for the rant. I have to remember to always check everything before I go to infusion room I also need to remember to know all the drug names that I am being administered cause sometimes they can make a mistake with that too. Like we don't have enough on our plates.

Lyn, so sorry to hear your still having eye issues and I hope it starts to get better.

we are just relaxing here. It snowed an it was nice and pretty in the morning and kids had fun in the snow but now it's raining and not so nice outside. I wrapped all xmas presents a head of time. yay! I am not wrapping anything the night before.

wishing everyone a happy weekend.

Alla

Lyn - I remember that song! When I chose Abracadabra as my user name, I was thinking that I just wanted my cancer diagnosis to disappear, like magic! Guess I have to keep working on my spells and incantations!

Alla - That's terrible that there has been confusion during your treatment. I'd be super frustrated too! Good for you, for following it closely and making sure that you didn't have to take a medication you didn't need.

I know that I always do it too ... at my infusions, before the nurse gives anything, they tell me what it is, and they always have another nurse come over to verify the meds and the amounts and the patient name. I find I am now in the habit of looking over all of the paperwork they leave near me. If I see anything that seems different than usual, I ask about it. We shouldn't have to, but once you notice that one thing is off, you start to get suspicious about everything else! Hope that everything settles down, and they take excellent care of you from now on!

jinxed myself... totally feeling like crap after taxol #1 mouth and teeth are sensitive and I've had a pounding headache since 3am no amount of ibuprofen or excedrin have help... any suggestions anyone else with similar issues?