Is there a July 2011 group?

Dexxy: I will have radiation as well. It just didn't get listed in that first posting. Mine will come after surgery, so it is some time off. Hopefully I can get Snoopy to add that.

Ana424: Thank you for the good thoughts. Right now I am hearing that there will be about a three week break after the last chemo treatment and surgery. So there will be some time to recover a little. I am pushing forward because this is just taking such a hit on stepping out of life, but I am not speeding anything up from what the doctors are suggesting we do. My health does come first. I just feel impatient to get this over with.

So I am pushing the healthy foods this week. I had some steel cut oats with strawberries, flaxseed and protein powder this morning. Breakfast and lunch have been a struggle because no one else is around to cook for and it's easy to just grab a bowl of Froot Loops or a frozen waffle. That's just not working! I feel like crap all morning when I do that. So I have been changing it up the last few days. I also have been eating a spring mix or spinach salad for lunch each day. But I am struggling to find an easy healthy meat to get into the salad for boosting the iron. What are your favorite salads ladies?

I plan on keeping going on this thread. I see the other threads that are similar to ours doing that. I appreciate all the relationships we have going here.

Frances: I have been meaning to ask how your cold caps worked out after all this time? Also, I hope you don't mind my asking, but have you lived in Singapore all your life? I admire how well you speak English, better than some of us. : ) I have a very good friend here who was born in California, but his family is from Hong Kong and he visits from time to time. I have learned that his culture is much more private about family and personal matters than typical Americans. So if you don't want to get into answering those questions, I am not offended.

Off to get my Neulasta shot. The only SE that I have going today is that my face is extremely red and warm. Has anyone seen that with Taxol treatments? 

DD Taxol. My pain was all on the A/C. It has improved dramatically. We are not doing Neulasta with the Tax and I already feel a difference. I had the Neulasta after each A/C and the bone pain literally started on day 2 or 3 and never went away until it was time for the next round. Three weeks out of my system and boom, no more back pain, just muscle tension in my shoulders that goes away with OTC meds. I start PT and BC yoga this week and I hope both will help.

Painting: It sucks when you get the "party line" bureaucrats in this process.   I also don't like not being told something because someone thinks it would be paid for.  They should present all the options that exist for you and then you can make an intelligent decision.  

I know about steroid irritability. I'm in a little bit of that today as well.

My surgeon gave me the names of a couple of radiologists she likes and I'm going to ask my oncologist as well and then talk to the nurses and find out what they know.  Then I'll make a decision.  I need one that's open late so I can go after work. Not looking forward to that as a daily trip.  Oh well. Part of the deal.

On a brighter note I kissed by 11 year old Pontiac Montana goodbye today and traded her in (with a lot of money) for a 2010 Nissan Altima, fully loaded.  Didn't expect the fully loaded, but they had it in stock on the lot and wanted to move it out so I got a great deal. I'm looking forward to starting up my car and not having to clench my teeth and other body parts waiting for the damned check engine light to come up or something else to not work.  

And now I have A/C again! I can start wearing hair to work if I want.  No way I would to that with an unairconditioned commute. LOL

Actually, I went to the car dealer with my ex this morning in a wig and when I came back with my van for the trade in I traded in the hair for a hat.  They were highly amused.  It was fun.

Hope everyone is having a decent weekend.

JBug- sorry for the delayed response.... But yes. We often say WBC is "14" instead of 14,000 but it is the same. The CBCs I get are daily or every other day when we are trying to get the right number of neupogen shots. I don't have a spleen and my normal WBC is about 14 which is high compared to "normal". My situation is a little unique because I have low platelets from a immune disease. So when my body is busy making too many WBC, it slows down on making platelets. So that is why we switched to neupogen. Also, you can get iron supplements over the counter, just ask the pharmacist for ferrous gluconate if you are prone to the big C. You asked about feeling flushed or warm- I get taxotere but I do get that on days 3-4. low grade temp around 99.1. And steroids can do that too.

Painting- I have been reading a great thread... I think it's Hair Hair Hair.... They talk what to expect from hair growth PFC. Also as I get closer to being done with TCH chemo and moving on to rads, I will be reading the radiation threads. But my onc was very clear with me about radiation. There are a lot of centers but some are not conscientious. She said they the "bad" ones don't listen to the requests of the patients and often burn our skin when it really isn't necessary to get the job done.

Also, someone mentioned the eyes. On taxotere my eyes are very dry and watering a lot. I have been using naturals tears which helps but my under eye and along my eye lashes swell for several days about 2week after each tx. It may just be the dry eyes but I was also thinking it is my eyelashes falling out.... Kind of like when my scalp hurt when my hair was falling out. My eye lashes have been starting to turn funny directions then falling out since 2 weeks after my second tx. Still have plenty but thinning. Anyway, good luck to all. You are always in my prayers.

Izzy325: Thanks for the info. It's interesting when my wbc went up so much, my platelets went down to the low end of normal. Previously they had been up above the normal range in the early days of treatment. I wonder if that is a typical reaction to see when the wbc's go up, the platelets go down?

J-Bug- I bet the Nuelasta along with the Taxol pains was the reason for your pain. The bone pain I had from Nuelasta was all in my spine. It was sore in very specific spots which is what scared me. The bone scan I had should no metastatic lesions and a small area of uptake on l-5 indicating excess bone marrow- did an x-ray and other scan and no mets of any sort, simply overactive marrow production- Nuelasta. Scans were all clear, and the onc felt that I had a major reaction to Nuelasta. She'd seen it before, though not often. I think the A/C was beating on my body as well. The NP told me the highest she'd ever seen a WBC after Nuelasta was 56! That was in a lymphoma patient with twice the Nuelasta I had ever had.

The bone pain is now totally resolved. But boy, did it ever hurt and scare me. I had my first taxol and the only pain I have currently is muscular- sort of like I did 6 hours of yoga non stop and my muscles are shaky. It is a walk in the park compare to the last few weeks!

The thing is, my wbc would fall below or into normal, surge about 7-days later and then be back down to an acceptable range by my next chemo.  There is a very specific pattern your blood work would show if luekemia was a concern. My onc said that Nuelasta is a very, very strong drug and it does its job but some people are also highly sensitive, as I was. I also had a full blown UTI when my wbc was the highest which explained part of that.

Try not to worry. I am certain the Nuelasta was doing its job. Can they lower the dose?

kk11: I've missed you. I was wondering how the Taxol was treating you. Glad to see you show up whenever you feel up to it.

Thanks J-bug - I actually came on here a few days ago to post an update and then lost my post! I was so fed I up and not feeling good, so I gave up. You are 2 treatments away from being done too right? I hate this bone pain. I think it lasted about 4 days last time (starting on day 2) before it started to taper off the 6-8th day. Do you feel like Taxol is better than AC overall? I was never able to do anything more than going for a walk on AC, but I have played Tennis 3 times since my first Taxol (one of them with bone pain - I thought maybe it would help - verdict is no, but it didn't hurt more than it does when sitting doing nothing). Anyways, I'm not at the energy level I want to be, but I play it by ear. I hope to get into the swimming pool next week. I've been a bit scared to because it's a public pool (owned by my apartment complex) and my counts were so low, but since they were much higher and in normal range this week, I feel a bit better about taking "the plunge" lol.

Oh, and I have to vent a little because it seems like everyone is making it hard for me to work part time. There is more paperwork and I can't believe how many people are involved and require notes from my doctor on a regular basis! I got paid by my work for my part time hours, but they told me I need to use some vacation to supplement disability in order to keep benefits. Well, they didn't pay me out any vacation, so I am stressing that my health insurance will be affected, even though I filled out all the proper paperwork. I've had trouble getting in touch with the person who is supposed to track my leave, so had to make multiple phone calls and still haven't gotten anywhere. The state has been horrible about getting me my disability benefits for the days I can't work...they claim they never received the latest paperwork from my doctor (which is BS), so I spent hours on the phone trying to get through to them on Wednesday (while I was on my way to chemo and again when I was in the chair). I finally get through and the woman ends up hanging up on me prematurely (I highly doubt she's ever experienced a major medical condition or she wouldn't have treated me so terribly). I haven't received anything from them for about a month, so now I'm not getting anywhere close to what I should be getting. I'm so frustrated! I know I should be thankful that I am able to get disability since some of you are still working full time, but sometimes I feel it would be better (less energy wasted) to either be on full time leave (which would eat up a good chunk of my vacation time) or working full time. It's this part time business that's causing all the problems! Ok..vent over. I knew you ladies would at least understand how frustrating it is when you're already feeling crappy from chemo. 

I am so jealous that some of you are done with chemo, but congrats.

Missed logging on for a while as I spent two weeks trying to recover from fatigue. I am on week 3 since my last treatment and feeling the best since this whole fight started. I still have one more week off before I start Taxotere and I am very nervous. Onc office tells me it's easier than AC, but what I have read on the Taxotere board many ladies complain it's worse. I feel my SE's from AC could have been much worse and feel Tax is going to do that to me. Can't wait for chemo to be over.

Sending feel good vibes to you all

ellenquilt you don't fail to crack me up. Would love to see the face of the salesman. I remembered 9/11 vividly too. My eldest was just 2.5 months old and I was out on a business dinner when the news broke. We were with my group MD who is an American. No one believed it and thought it was a nasty prank. When I got home, my DH and I just sat in front of the TV watching live CNN coverage the entire night and our hearts went out to all in America. Our cable is showing many documentaries on 9/11 these few days but I refused to watch any as they're all so sad.

Hope everyone had a good weekend that was SE. Ellenquilt...I loved the car story...totally cracked me up!! I'm sorry about what you went through 10 years ago. I remember I was at work when it came across the radio and we turned all the computers to stream the video. My heart sunk becase I as so afraid my brother would get called back into service and he use to work at the Pentagon. 9/11 is always bittersweet to me anyway because that is the day I married my now ex in 87. My youngest sons birthday is tomorrow and it is just like today because of all the aftermath.



I had a pretty good weekend. OrthoPets the company Josh works for had the end of summer party yeserday. Glad I was feeling up to going but to me I couldn't taste the food. We met at a localchinese restraunt and then went to this awesome putt putt/go cart/bumper car place. We played putt putt and laughed so hard. Everyone loved the scarf I wore. It was josh's moms favorite before shepassed from cancer in 08. Josh and his dad insisted that I take and wear her scarves. I forgot my camera of course.



Hope everyone has a great week and for those in the chair tis week hugs and hoping for little SE's.



Tina

J-bug....hope you get to feeling better soon. *hugs*

Ellenquilt - I am in California and I remember 9/11 like it was yesterday (many sleepness nights watching familes of the missing on tv and crying). We've been watching quite a bit of 9/11 tv lately and it has a huge impact on us and we weren't even physically there. Hugs to you and everyone else here who lives in New York or knew someone affected.

 J-Bug - I'm feeling the pain too. It kicked into full gear by Friday night (the day after my Neulasta shot), though I was already feeling tender to the touch everywhere on Thursday night. I am hoping it will be better in the next few days too.

Rabbit - Wow! 4 parties! I hope you're enjoying them as much as possible. Good luck with your appointment on Wednesday (in case I don't make it on again before then!)

AFM - I'm stuck waiting until Tuesday to see when my dentist can get me in to fix my badly chipped molar tooth. At least I'm not in any pain in my mouth, just everywhere else lol. I'm sticking to soft foods just in case, so hopefully they can get me in soon.

I just found this board and want to say thank you already!  I too started chemo in July.  This weekend I felt I was hitting rock bottom, but finding this board and reading some of your posts has given me some encouragement.

I was diagnosed a week after I turned 40.  Needless to say, all the jokes about getting old and falling apart were no longer funny.  I have four kids--ages 14 to 7--whom I homeschool, although school is practically non-existent right now.  Hopefully we'll get back at it once I feel like a real person again.

I've had 4 rounds of A/C and my first of 4 Taxol, radiation afterward.  It's been miserable from the beginning, constantly one thing after another.  The unpredictability of it all has been somewhat maddening.  I had a scary infusion experience this last week.  During my pre-meds (Benadryl, Zantac, and Decadron) I started to feel sick, tingly all over, and my heart was racing and pounding.  I wasn't sure if I was going to pass out, throw up, or what.  This happened a couple of times.  I've had many issues with the Decadron previously so they nixed the protocol oral doses before the Taxol but still gave me the 20mg in the IV.  Apparently that didn't sit well with my body and they plan to reduce it next time.  Also the Benadryl made me feel nasty all day.  I'm hoping to get that reduced next time too, but, of course, hopefully without a reaction to the Taxol.

I look forward to reading more of your posts, both old and new, and reminding myself that I'm not the only one going through all this.