Chemo in May 2014

Yes, taking Claritan.

I'm taking claritian, ibuprofen like clockwork although I don't know why I bother because it seems to do NOTHING for me, but I'm afraid to NOT take it because I'm afraid maybe it is doing a little bit, and not having it will push me over some edge. I got lucky…again…I got the worst side effect. My MO and I discussed stopping the neulasta but I'm already running fevers so she is afraid without it my counts will drop too much. At this point I would rather be in the hospital dealing with low counts than this level of pain. At the very moment I'm sitting about a 2-3. Thats where I am constantly, until a wave hits (and the doctor explained these pain waves to me,  how the bones have run out of space for the white cells and need to kick some out into the bloodstream, and when that happens my pain level drops down again) When a wave hits …I didn't know where 10 is. Is it when I almost can't walk? Or when I can't walk? Or is it before that? My friend is a pain management nurse. She said I'm beyond 10 and its not acceptable. I'll be talking to my MO today about getting some other type of pain meds, like a patch that won't affect my already touchy GI system. The GI problems I'm having are tolerable. Even with the weight loss, even if I have to go get IV fluids every couple of days, even pooping acid 12 times a day, it is tolerable. The bone pain is not tolerable. I kept my eyes on the fact "It will go away after a few days". Mine isn't doing that. And, according to my MO, is probably here to stay for the duration of treatment. 

Neverforsaken, I will ask about that! Thanks for the suggestion!

writinghelps, many women in your position choose to use their non-dominant arm for infusions (if you're right-handed, that would be your left) because lymphedema is harder to deal with in the dominant hand. Do have your doctor check out the new swelling, as a seroma is still possible this soon after surgery. Lymphedema is certainly a possibility. When it's in your chest, side, axilla or back it's called "truncal" lymphedema. Here's information about it:
http://www.stepup-speakout.org/breast_chest_trunck...

Getting a referral to a well-qualified lymphedema therapist for evaluation is a great idea. S/he can take baseline arm measurements for future reference, help you with personalized risk reduction tips, teach you a gentle lymphatic self-massage, and fit you for compression sleeves and gloves you can use prophylactically (a good strategy especially while you're doing taxol chemo or rads, both of which can cause swelling that can tax your compromised lymph system.) Here's how to find a well-trained one near you:
http://www.stepup-speakout.org/Finding_a_Qualified...

Please feel free to join us "swell" Sistahs on the Lymphedema forum here to read or ask questions--lots of supportive and knowledgeable gals there!

Gentle hugs,
Binney

Well, no wonder! So today I spiked a fever again, 100.8. I'm to call my clinic at 100.5. As it turns out, yesterday when my bloodwork was done and my counts were fine, my MO examined me and ordered one more blood test. That came back today that my liver is not happy. (thank you Taxotere) Also my port site is looking pretty messy. Since my immune counts were fine yesterday they told me to come in tomorrow morning to repeat all the bloodwork to see where I'm at, get some IV fluids for the weekend, as well as IV antibiotics. 

Today was actually not too bad. I would put my pain at a 2-3 all day, which compared to what I've been dealing with is very tolerable. But I did too much, not knowing that I was getting sick. It is HARD to stay 'down' when I'm feeling 1/2 way decent and there is a house full of kids and all the stuff that comes with them. I still can't eat and have lost 10 lbs. Today is day 8.

Thank you debiann. 
I should say, we have had TONS of support! My best friend, who's child with Ds had cancer a few years ago, spent all day Monday and Tuesday with me so she could watch the little one and I could sleep. Tuesday my son came and is still here. Someone has brought a meal nearly every night. Not to mention, my husband has been wonderful.

(((hugs))), lespring.  I hope you are feeling better.  Take it easy and let others take care of you.

Kat - Sounds like you did the same treatment I am about to start next week. I don't know what DD means but I will be going every other week for A/C and then Taxol after that. I'm not 100% sure that I will be going every other week for the Taxol. I'm very concerned about my nails, I know hair will grow back, but the nails I've read here could be a long term problem. Did you have issues with Taxol and your nails?

I will be seeing my MO again today when I go for fluids. Its only my first round and only day 9 so I think they had to see what I was going to do first and go from there. I have 11 more days until my next infusion. Today they'll be adding some meds for my GI system to slow it down. And yes, we'll be discussing doses. Thank you!

MomMom - I found your post and pics on icing your hands and feet. Love love love the little cover and you're so cute! Thank you for posting, I was wondering how to actually do ice for 1.5 hours! From what I understand though, my Taxol will take three hours, I have to double check, but I believe I'm only having 4 doses. 

How will I keep my ice cold that long? Another question, will they show a movie :P lol

I also had a call from my insurance pharmacy for the Nuelasta shot. They are shipping it to my home. Has anyone given themselves the shot or do you always go into the docs office? My MO told me I could do it myself - like that is going to happen! I do have a good friend/neighbor who is an NP. I thought about asking her to do it. Save me a trip into downtown.

HomeMom,

I had darkening of my nails but I did not lose any. I had biweekly Taxol for two months (total of 4). As far as neuropathy I had a couple of fingers that would tingle quite a bit but It has now been two months since my last chemo and I do not feel the tingling anymore. I have heard that maybe the nails get hit harder when you are on the 12 weekly Taxols but I could be wrong. The darkening of my nails have grown out in the last two months. They looked pretty bad until then.  I had a friend give me my Neulasta shot because I didn't feel comfortable giving myself the shot.

Lespring,

I am really sorry to hear that you are having such a had time. You are right not everyone has it easy. I am very grateful that my experience was not too bad but I know that is not the case for everyone. The part that was most difficult for me was the anxiety. I have had a great deal of anxiety right from the beginning and have had to take some medication to deal with it  but thankfully it is getting better.  I sincerely hope that your SE's are just temporary. Best of luck and prayers

I just realized I have a canker sore...it has been a week since 1st infusion...do they typically take this long to show??

lakegirl - i have read people saying they got the sores at anywhere from 4 -10 days from the infusion.  I guess it is all different for everyone

Lespring - don't ever apologize in here for telling us how you feel.  This is a place that we can do that without guilt cause we get it.   I think I would have been in a much worse place mentally than you had I been going through what you have been through the last 10 days.  Yeah for baby steps and for the neulasta shot bone pain regressing!!.   You come in hear and tell like it is anytime and I will hug you everytime!

I have felt not so great the last 24 hours - felt ok in the am yesterday but by the afternoon I had been visited by the dementors from Harry Potter and they are still with me - sucked all the joy and life out of me.  I am running a slight temp - only 99 right now but I usually run low so a 99 is more like a 100 to me - keeping an eye on it.  I will say on a positive note that my neuropathy does not seem to be as bad this time as the first time - hopefully that 15% reduction will hold it at bay.   Chemo just sucks ya'll!!  Sending you all gentle hugs!

My mouth was awful the first week after infusion, but it turned out to be thrush, probably from the steroids.  For the next round they gave me a special swish and rinse to hopefully avoid that problem next round.  

Funny how your attitude toward weight loss changes suddenly.  I could certainly stand to lose weight, but when I lost about 7 pounds in 3 days due to the big D,  my husbands says "Hey that's great" and I respond, "No that's terrible, I'm not supposed to lose weight."  No fear, I think I gained it all back in one meal,lol.

My hair hurts.  Yesterday (day 15, just as my nurse navigator predicted)  I noticed some falling out.  Today it hurts and my scalp burns and itches.  After it all falls out does your scalp still burn and itch?

Five days till round two, I have no idea how to mentally prepare for this.  When I went for my NADIR visit I asked the PA if I should expect round two to be similar to round one, same SE's, cause knowing what to expect makes it easier.  Of course the answer was no, the SE's could be different every round.  Wonderful :P

I'm on Day 4 after infusion. The swelling in my sternum that I mentioned before has lessened a little. Although I feel there is some under my arms now.  It's not too bad. I'll just watch it. I do have an appt with PT but it's not until the first week in June. And thanks to whomever gave me lymphedema info. I'm pretty sure this PT has some LE (is that the right abbreviation?) experience. I had a 5 min eval. with a LE therapist right after surgery and she calmed some concerns. Wish I could go back to her but she's booked for months.

So far my SE's have been mostly mild. I read through half of the "starting chemo April 2014" yesterday trying to determine when the worst would hit and what to expect. Now I'm just sitting here. Waiting for the worst days to hit. It's getting old. Not that I want to feel like death, but I dont like waiting for it. I'm killing time binging on Netflix series. Currently, I'm watching Merlin. :-)

I found a white patch in my mouth yesterday.  Thrush. I know it well from years ago when I was nursing my first baby. I had a bad case of systemic yeast in my breasts for 9 months. Since then I have felt like I am always on the fence with yeast and that if I eat too much sugar or dairy in one sitting I fall into the yeasties.  I'm trying the baking soda/salt rinse, brushing often and biotene rinse.  I'd like to avoid taking diflucan (I guess that is what they'll give me for it). I hate being on any types of drugs. And I've had to take so many drugs these last few days. Anyway, I had noticed my mouth feeling a little, uh, itchy?  Not quite the word though.  My guess is it's going to get worse before it gets better. Won't plain yogurt help? I called the helpline yesterday to ask a few questions before the weekend hit and the nurse said avoid yogurt with live cultures.  She said the change in gut flora from a weakened immune system could have an adverse effect with the live cultures.  I thought that was the point of live cultures?

Yesterday was my last days of the steroid and Claritin. I'm so glad. (Have I said how much I hate being on drugs?)  I wonder if I'll crash from stopping the steroid abruptly.  I am also a little concerned about how much worse the bone pain might get not being on Claritin.  Right now it's just aches and pains randomly throughout my body, coming and going and never getting to severe. But now that I'm off Claritin and I may not have hit the worse of it, well, not sure what to do. The nurse did say I could take it past their recommended 3 days. But I don't really like taking things preventatively.  Although I know it's also hard for a drug to kick in after the pain gets too bad.

Sorry this is so long. I guess I needed to write all this out. Hope it makes some sort of sense.

Peace,

Wendy