Starting Chemo January 6, 2014

I'm in your pocket too Carpe!!!  Much love and hugs!

well good luck tekwriter, and everyone having treatment. I had taxol #2 yesterday and have had no SE 's at all.... In fact I feel fantastic! I am only had a very small dose of dex and from now on will not have any at all, this makes me very happy. So far this regime is much easier than A/C. I  an to have a week off work around #9 when tbe fatigue could creep up on me.  Good luck all

LIL

Wow - I'm so envious of everyone on Taxol who has no SEs. The bone pain in my legs and hips is so bad, starting about a day after each Taxol, that I'm literally in bed and in tears for 4-5 days. My doc has me taking ibuprofen, percoset, and glutamine, but I'm not getting any relief from those. Anyone else have this??

Hi everybody! I just stumbled on this group. I've mostly been hanging out on the Stage 4 lung mets thread, but  it'll be nice to have friends to talk to who are at or near the same stage of treatment, too.

A little about me... I'm 51, and this is my third time at the rodeo, so to speak. The first time was in 1997 -- got off easy with DCIS. opted for a BMX, and I managed to stay cancer free for 13 years, when it came back in the same breast (what little was left of it) as stage 2B. Had my pectoral muscle removed and reconstructed with my latissimus dorsi. Did six rounds of chemo (TCH), and radiation (x33). That was in 2010. 

Back around Labor Day, I started coughing. Doc said it was bronchitis. The cough wouldn't go away. I was convinced it was ragweed because everybody I knew seemed to be having the same symptoms as me. Only when they started getting better, I was getting worse. Coughing non-stop, short of breath, quality of life non-existent. Got to the point I couldn't go to work anymore. It was all I could do to walk across the room without getting completely out of breath. Chest x-Ray showed nothing, CT scan showed possible pneumonia, but pulmonologist suspected something more and ordered a PET scan. PET scan showed a pleural effusion, and when they drained the fluid, they found cancer cells. There were also spots on a few bones, but they were very small.

They started me on chemo scary fast. I had my appointment with my oncologist on a Friday (1/10), had my port put in on the following Monday, and my first round of chemo on 1/15. I started having breathing problems during my first infusion. My O2 sats dropped into the 80's, and I had to be put on oxygen. They set me up with a unit at home, and I was on oxygen 24/7 for several weeks. But after the very first chemo treatment, I noticed a dramatic improvement. (You know you're in bad shape when chemo actually makes you feel better!) My cough started improving, and after the second treatment, I started weaning myself off the oxygen. By the time the third treatment rolled around, I was completely off oxygen. 

As miserable as chemo makes me, I'm extremely thankful to feel better than I'd felt in months. But I have to say, chemo has been a LOT harder this time than it was 4 years ago. I'm sure being in an extremely unhealthy state to begin with makes a huge difference, but I also wonder if just having been through chemo once before just takes a toll on your body. When I did this the first time, I was able to work part time during weeks 2-3 of each treatment cycle. This time, it seems the fatigue never lets up. Last cycle, I was so proud of myself because I went to the grocery store and managed to do all my shopping without using one of the electric carts!  I must say, having had this experience, I will never ever again judge people using those electric carts. You just don't know what somebody's situation is. It's not that I couldn't walk, it's that I didn't have enough stamina to complete a shopping trip under my own steam. I could maybe make it through the produce department before I'd be too exhausted to go on. And until 6 months ago, I was very fit! I wore a fitbit pedometer and walked anywhere from 12,000-20,000 steps a day!! Sorry, didn't mean to ramble, but this has been a very eye-opening and life changing experience.

So last week I had another PET scan. Haven't gotten the results back yet. Praying it will show that the chemo has wiped out every bit of cancer. Friday, I go for chemo #5. Only one more after that, thank God. I'm so wiped out already, I'm not sure how I'm going to make it through round 5. This is supposed to be my feel good week, but I still haven't made it past so-so. This fatigue is killing me. I sleep a good 9-10 hours at night and still need to nap during the day. Is anybody else dealing with this level of fatigue? Or is it just more of I'm having a particularly rough time because I was in such a bad state to begin with?

Sorry so long -- I had a lot of weeks to catch up.

katiegrey I am having a ton of pain with taxol.  It seems to start in my back and just wander around to all of my other bones.  Really sucks.

Katie- there are a couple on the dec board who have the pain with the DD too. Your not alone. I know it helps to know that. We are all in this together :0)

katiegrey- we are close on our schedules. My last 2 are the 10th and 24th of this month. Good luck to you too!!

Katie - I'm also on dose dense Taxol and also have horrible bone and joint pain in my hips and knees on days 3-5 after chemo.  My treatments are on Thursdays, and the first Sunday after my Taxol, I couldn't even get out of bed and the pain brought me to tears.  Vicodin did nothing for me.  It seems like the only thing that has helped is getting myself up and moving, so I try to walk a few miles on the weekends after my treatment.  As soon as I stop moving, the pain hits though.

Another bizarre side effect that just started: skin peeling off my heels and feet.  Right after my 3rd Taxol, I noticed a large blister-like area on my foot.  It wasn't a blister though, just loose, dry skin starting to peel.  My entire left heel has peeled and the right one is starting.  I freaked out and called the on-call MO over the weekend, and she thought that the AC caused a layer of skin to die in my feet, which is now causing peeling.  Anyone else having this? 

In other news, I got the results of my "post-chemo" imaging today.  Looks like the tumor and nodes haven't shrunk much at all, and there is an area of calcifications that is concerning.  Now I'm starting to second guess my decision to have a lumpectomy (now would need to be a double lumpectomy to get the calcifications out too) and wondering if I should do a double MX instead.  To say that I'm disappointed by this is a huge understatement.  It makes me feel like all the chemo/side effects/etc have been for nothing.  On the bright side, I have a surgery date set for May 12, and only nine days to go until my last Taxol.  

to those having taxol, I also am on taxol DD. had my third one this Monday. For neuropathy Docs recommended L glutamine which is a supplement powder that you mix with a liquid and is supposed to help prevent neuropathy. I also have been icing my hands and feet during treatment. Search this on the discussion boards or online for information. i made my own ice packs with fleece covers and bring them to treatment. This is supposed to help prevent as well. I have had minimal problems with neuropathy, of course not sure if it is from doing these things but it can't hurt. There is one facility that one of the ladies said started to supply ice mitts and booties for patients during taxol. My MO said if I started getting neuropathy she would give me meds like neurontin., but who wants more meds when we already take so many, so the icing is worth a try.

I get muscle pain after taxol. After the steroids wear off, which is tonight the aching starts. Arms, shoulders, hips, neck, chest. If I press on my muscles it feels like a bad bruise or an overworked muscle from lifting weights. I get neulasta also so that contributes to the joint pain also. My muscle pain lasts for 3-4 days then gradually gets better then my muscles in my legs just feel sort of wobbly. But you're right, walking is good and feels better if you can just get yourself out there, and of course where I live as long as its not snowing lol!

Good luck to all of you

Hi all,

I haven't posted anything in a little while but am always checking in. I have done 2 Taxol's now and I do find it easier than AC. However I was getting AC every 3 weeks so I miss that week before chemo where I felt really good. I find with Taxol since it's every week I don't have many of those days where I feel great because of my lack of energy. 

Throughout this process I have also been organizing a gestational surrogacy pregnancy. My husband and I do not have children and were planning to start our family around the time I was diagnosed. So prior to chemo we froze our embryos. We have been lucky enough to find a wonderful gestational surrogacy. Our only roadblock now is genetic testing. I have the BRCA 2 gene and we are able to test our embryos prior to implanting them for the gene. It's pretty impressive what we can do these days. The only issue is that it is time consuming, it can take up to 12 weeks to prepare the testing. My surrogate is anxious to get started and so am I, but it is so worth it to do the testing, right? Opinions anyone?

Carpe - I hope your PET scan went well yesterday, I have been thinking of you often.

Rabitvelvet - It seems like many of us are getting a lesson in patience. Lessons stink. Like everyone, I want this to be done, I can handle getting through it, but delays & setbacks are so hard to tolerate. Glad you are well enough for your chemo...let's hope your blood work & my liver keep doing their jobs and we can power through this leg of the journey.

I am scheduled for my 2nd round of Taxol tomorrow morning. I have been trying not to complain about the SE since I was so disappointed and upset when I could not get my chemo...plus it is better than the A/C. I had the bright red swollen stinging face for 2 days & now mucsle/joint pain in my back and hips for several days. I am worried about taking any pain meds as I do not want my liver to react to Tylenol & I am not supposed to take Advil because I have a kidney issue (from before cancer). They gave me a really low dose oxycodone, but I am concerned about taking more than one a day (which is what I used to take of vicodin for my kidney pain). I need to talk to my MO tomorrow about this, because I do not think I can stay as is for the next 11 weeks. 

Question: How are people handling being in public & germs? I am working from home right now, and was basically a shut in through A/C as it was winter & cold/flu season here. My white & red blood cell counts have been low, but not dangerously low.  I have not been in public without a mask & gloves, but am wondering if I can relax that now. I am going to talk to my MO tomorrow, but wondering how the rest of you are handling this?

Good luck everyone, and may you be SE free today.

 I followed mikesgirl for icing technique and have had minimal nerve problems. The staff did not know anyone that iced during taxol but certainly didn't discourage it and were interested in the rationale. My MO didnt siggest it but was fine with me doing it. It constricts the blood vessels in fingers and toes and prevents the chemo drug from I filtrating those areas is what I read. Similar to cold caps to prevent hair loss I think.

Here's what I did following mikesgirl advice and reading info on Internet. Use freezer zip lock bags. Use2 bags for each pack. I made 6 packs so I could switch some out if they did not stay cold. I brought them in a small igloo cooler. Mix 1 cup alcohol and 2 cups water. Double bag, squeeze out as much air asyou can. Freeze overnight. It will be like slush. I used an old fleece blanket, cut it up and make little pillow cases for them. Barefoot or with thin socks, I sandwiched my feet between 2 ice packs. For my hands I would grip a pack, or sandwich my hands between 2 packs also or just lay my hands and feet on the ice. Make sure you get all fingers cold. I just iced my fingers (not palms) and toes and ball of foot (not arch or heel). did some of you do whole hand and foot? If you are sitting in a chair with hands in lap make sure you have a blanket in your lap so your legs dont freeze! Here are pictures:

my feet are peeling but not my hands.  all of my nails are breaking.  taxol makes ac look like a walk in the  park to me.

today was my hibernation day. I had taxol on Monday and felt great yesterday (thanks steroids) but today achy with no energy. Feel so much better when I get out also. Will do tomorrow. Supposed to be in the 60s here tomorrow which will be like a heat wave. Signs of real spring evident!

hi  everyone, I have just finished 4/6 of my tch+p? I've had a rough time every time. It takes me like a good week to feel well enough to get out of bed. I had terrible stomach cramps and a digestive issues w each chemo too. This time it was a full week after when that hit me. 

I was reading another thread about people with her2+( early stage)being offered weekly taxol for 12 weeks and herceptin I think every 3 weeks for a year. And they said it was a breeze. I wasn't offered that, I think it's fairly new. But I'm wondering since my tumor has shrunken to the point they can't feel it since my 3rd treatment. Maybe I can stop now it's done it's job. Ah wishful thinking, I'm sure. 

I hope today finds you guys as well as can be in this crazy time.