Cytoxan Taxotere Chemo Ladies- February/March 2013

kbeee, you are extremely patient? It still surprises me the ignorance of so e people at their jobs.

If they don't teach that for their jobs maybe just curiosity and google information that they might be faced with at work. I a, 45 and always look for the older and more experienced nurses and techs.

On another note, I finally started walking yesterday, with my dogs, around two miles until it started pouring! I needed to start one day. I will do it again tonight!

Keepthefaith, something my MO suggested is to get a flu shot before the chemo. Never had a flu shot before but got it and I guess it helps in not getting a flu during the treatments.

Hey Ladies!

So two things:

One: I have been sucking down Halls Sugar Free Cough Drops like crazy and they are really helping to keep my mouth feeling normal. Just a FYI if you want to try it! Something about the menthol I guess. I didn't start doing it until like day 4 after my first chemo and my whole throat was swollen but this time I got out ahead of it and I haven't had nearly as bad swelling or that weird icky taste in my mouth.

Two: do any of you have long wigs? I got a wig that looks just like my hair, and that's all great, but man it tangles like CRAZY!!!! And it's not easy to brush out either, I keep worrying about ripping the hair out. It's driving me nuts. Any one with tips? I keep meaning to call the wig shop but I too tired to talk to people today!

Its synthetic. I'll look into that! Thank you!

Thanks, Bluegrassharp. I saw my oncologist today and she recommended Ambien for my insomnia, so I got a prescription. I scheduled my port removal for two weeks after my last chemo (Dec. 6), and also scheduled my bone density test. Apparently which hormone I take after radiation (tamoxifen or arimidex) depends on the results of the bone density test. It was a productive day and feels like things are moving right along. Radiation will start on Jan. 6, the day I go back to my job as a kindergarten teacher. That should be fun.

Oh FDM, I am so sorry -- I get the opposite reaction from my MO: complete compassion and dedication to eliminating the SEs anyway he can. You deserve better treatment.

Is there a nurse navigator or someone else you could talk to? Many of us on these boards get the sore throat and mouth sores -- that is a common SE, and if he is unwilling to admit it, I think I would give a piece of my mind to the guy! Maybe there is another MO in the group that you can see going forward? I urge you not to take this lying down, because the SEs can get more serious as you go along, and you will need the help of your medical team to work your way through this.

fairydog, so whom did your MO recommend for your boobs aching? Ugh! My incision reopened after chemo, I guess your MO would have had me go back to the BS? (It reclosed btw). Fire him! Easy for me to say. It's not as though we women with BC are sick, stressed, vulnerable, physically weakened...

My MO said she never heard of the issue with the boobs. They felt like the nipple and areola were on fire for 4-days. She was going to talk to my oncology surgeon. My one boob that didn’t have the cancer the nipple was erected. I’m really upset with the mouth issues, because the MO put me on antibiotics and steroids so I could breathe. I had a fever too almost had to call the ER. My next TC is December 11th, so we will see what happens to my throat afterwards. I guess tomorrow I will call my dentist about my nerves in my teeth. The MO could believe that I would have such sensitive nerves to the chemotherapy.

Bluegrassharp- I needed that laugh tonight. I don’t know can I fire an MO while I’m doing treatments? Maybe I should wait this one out until the next round and see how my throat does then

Bluegrassharp, yes, my dogs loved the walk! They didn't care too much it started raining.

I think I am less scared about the chemo and its SEs now. Yesterday I walked for the first time, I had salmon for the first time and today I had a fresh salad for the first time.

I was so scared about the whole thing, the possibility of infections, SEs and the chemo itself I stopped doing so many things.

Next week is my last chemo and in my head it means I am finishing this and returning to my normal life. Or at least to my new normal.

Some last thoughts, FDM, on the issue of sore boobs. While my lumpectomy site healed, it felt like I had a 3" piece of chalk in my breast, which hurt like h*** especially in the car bumping up our mountain road. Before chemo1, it had healed enough so it felt more like a 3" hunk of clay, an improvement for sure. But after chemo1 and again after chemo2, ALL my surgical sites -- including old dental work -- started to ache again. Even though I'm pretty sure the lumpectomy surgery was nowhere near the nipple, the discomfort extends that far and beyond.

When I described this in a post, several others reported similar SEs. KBee, bless her heart, replied, "It seems that taxotere causes pain in any weak site. I think I can feel every prior injury I have had on those first few days after the infusions." Since chemo is designed to attack rapidly dividing cells, it seems possible that cells in healing tissues would be affected, too. We have all undergone assaults to our "girls," so perhaps that is the basis for your boob issues. Just a thought.

In the meantime, my aching boob feels best when I sit in my comfy chair with a heating pad over a pillow pressed under my arm and over my lumpectomy site. Maybe this would make you feel better, too.

Regarding boob issues, my chemo was pushed back again but just two doses of steroids caused boob issues for me. I had an oncoplastic breast reduction and the skin around the aureolas became hot and pink. That tissue healed back in September so I was really confused. I'm scared of what the full course of steroids and chemo is going to do to my skin AND the recently closed wound from infection. My MO is watching that area like a hawk and keeps pushing chemo back because of it. She insists the skin needs to be stronger before we start. It may not hold up for all four TC cycles.

I agree, I think you should get another oncologist.

I have had sore throat and ear pain and tooth pain off & on this 1st round as well. It is a side effect..

I am rinsing with baking soda and salt after I brush my teeth and gargling on my throat....it really helps.

My oncologist I LOVE, he is kind and told me to call at 3am if I need to as that's what he is there for, he said they can treat most side effects and I do NOT have to feel bad through this...so I do like that!

I used to be a nurse years ago, and worked in a large clinic with different specialty docs...I would say probably 5 out of 25 were compassionate and kind and really cared about their patients....so you really do need to find one of the 5!

Happy Thanksgiving EVE...it's going to be 'different' this year...but still have so much to be thankful for! right??!!!

I was thinking about what everyone has said about compassion, etc. I am guessing that many of the very compassionate oncologists have had a personal experience with a family member going through cancer treatment. Until you have actually gone through, or lived with someone going through it, I do not think you can have a true appreciation for what really is involved. I almost think it would help during their residency to have them live with a family of someone going through cancer for a few weeks. I think it would change their perspective a lot. Going from room to room with a bunch of other residents at a hospital does not adequately prepare them for what their patients are truly going through. I work on an ambulance, and there are severL coworkers who are truly nice people who love what they do. Nevertheless, I do need to remind a few of them that though this may be the 5th call for XYZ today, it is this person's first time calling for this, and they are scared, nervous, and sick...just as much as the first patient. They sometimes need that reminder, and I sense it is the same thing with many MOs. I am hoping at they have comment sheets to fill out at the end...but I doubt they will.

FDM, Hopefully the specialists will give you so some solutions. Maybe they have some tricks up their sleeves without the tunnel vision of the MO. I hope you will find more compassionate doctors. For your doctor who said chemo would not cause certain side effects, you could say the same thing I said today. When I had neupogen in the hospital, it made me very nauseas...both doses....it started the same amount of time afterwards, and it persisted for days. I have had zero nausea from chemo, so I knew it was from that. When I asked at the last appointment if I could have something else for nausea, MO said that Neupogen and Neulasta do not cause nausea. He told me to take compazine...i told him it did not work. He told me to take steroids. So...long story short, I called today as instructed to update them on my temp, and while on the phone I asked for something for nausea and vomiting from the Neulasta. They repeated that Neulasta does not cause nausea and vomiting. My response was, "I am glad to hear that the majority of people do not get nauseas from this. I see in the literature that it is not a common side effect, but apparently my body did not get that memo because I have been nauseas, vomiting, and am dizzy, just as I was from the Neupogen, and would appreciate avoiding any further ER trips." I did go on to add that my PCP office was still open, and I would be glad to just go there and get a prescription if that was easier (and my PCP would do that for sure). MO called in some Zofran. It is working. I am not sure why it came to that...I was polite, but was direct and did finally get my point across.

Quirkygirl, I hope your wounds heal soon.

Wrenn, I hope you are still feeling good.

Wishing everyone here in the US a blessed Thanksgiving. Wishing everyone some side effect free days.

FDM -- Don't be surprised if your specialists are not really able to cure the SEs -- oncology is not their specialty. But I hope they can help to treat your symptoms. When you see them, take a detailed list of all the drugs you have taken, and print out the side effects of Taxotere and Cytoxan for them. IMO it would be wise to also change oncologists, but in the meantime, maybe you can get some relief. Keep a journal of your SEs, what you take, what you eat, etc. just in case you need it.

Buckle your seatbelts -- I am about to let loose with a rant!!!! Bluegrass -- there's a puff of angry steam goin up in so cal as well!!

We deserve to be treated as the strong women we are, not as petulant crybabies. Chemo just plain sucks, and a lot of how it works on an individual is guesswork, even for the most experienced and cutting edge doctors.

KBeee is right, those with personal cancer experience often are are most compassionate. My first tx resulted in a rash in my perianal area, which I initially thought was a yeast infection. The onc nurse suggested I call my GYN since my MO was out of town and I was at work -- she was just trying to figure out how to get some relief to me ASAP. My GYN is a prostrate cancer survivor, and he called me back right away and called in a prescription for some cream with a little steroid in it. Turns out that my rash is actually an allergic reaction to Taxotere, which I have gotten all three infusions, but the cream remains part of the treatment -- Vagisil (for numbing) and Desitin (to keep the meds on the rash) have been added, and for the same rash which occurs other places on my body, I combine cortisone 10 cream with benedryl gel and rub that on. Arriving at this treatment was a trial and error process which even involved taking a photo of the rash with my phone can emailing to my onc nurse (haha) but the MO, BS, onc nurses, GYN and on call MO were all part of the team working to help me find some comfort. "Your body just doesn't like Taxotere" says my MO (can't imagine anyone's body does like it, but I appreciate his acknowledgement that my reaction is not a figment of my imagination). He is a biological chemist, and he went off on a musing that it may have something to do with the fact that I am allergic to Biaxin, and there is a slight chemical similarity between that antibiotic and taxotere. Hmmmm.

I have the sore boobs too -- in fact, it scared me at first because I thought maybe there were tons of dying cancer cells in there where my margins were supposedly clear. At a follow up appt with my BS, I asked her about it and she said the nerves are sensitive in healing breasts (hence the zingers we get) and each subsequent treatment evokes some shadow reactions. She said they do chemo before rads for that reason, because if you have rads first, the chemo brings back the rads side effects. Rads can also bring back a little of the chemo SEs, but less so, she said. She chimed in on my rashes too and contributed the suggestion to use Desitin throughout chemo.

I also get fevers from Neulasta (and my MO says that is the cause) -- but the on call MO over one weekend insisted that Neulasta does not cause a fever. "Well," I told him, " your colleague who is the clinical chair of your practice disagrees." That shut him up (though he grumbled a bit -- can imagine the Monday morning conversation after that -- I am probably labelled a cranky patient, but who cares). KBee gets nausea from Neupogen and Neulasta. I got heartburn from Neupogen, but Neulasta doesn't do that to me. We are different.

How many times have we heard WE ARE ALL DIFFERENT? That being true, how can ANY doctor say that this drug cannot cause this side effect for ME???

We are all vulnerable, worried, needing to trust in our team, and scared -- but we are also strong women, educating ourselves about our treatments and working to get better. We deserve a patient, thorough and COMPASSIONATE answer to every question. And thank God we have each other so when we get the run around, we have some hands to hold!! Go get 'em sisters!!!!!