Starting Chemo June 2014
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I taste salty and tart at this point. My husband wants to go to The Taste of Lockport this afternoon and I keep thinking why would we want to spend the money on me tasting things and can I walk around the loop. I am also worried about the sun. I know he just wants to do normal things.
I am also worried about the 6 hour drive we have on the 30th to take my DD to college. It's a 14 hour or more day! Can I sit in the car that long???? It will be a week and a half after my 2nd treatment. If I still hurt now after one how am I going to feel after the 2nd. They says it's cumulative. Sigh!!!
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Zinc supplements seem to help my tastebuds.. i retained that ability all through chemo, with some impairment on the first two days of infusion (enhanced salt taste and slightly off tastebuds). I ran out of of zinc supplements at one point, and after a week without it, my tastebuds started to go off.. got the zinc supplements again, and all okay!
mompv, for some, the effect is cumulative, for others, it gets easier and more tolerable.. i think i'm in the latter category.. i did develop greater sense of nausea on the third and fourth chemo session (but nothing really terrible, just felt it for more days), but other than that, i had so much more energy, and am almost "normal" besides the first week after each infusion. bring an overnight bag, so if the journey there feels taxing, you can just check into a hotel and continue the journey the following day.
wishing all a good day.
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oh man got my period! WTF! I thought I was in chemo pause!
Anyone else still getting theirs?
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Islandmama - not yet, but in addition to the achy pains all over, my ovaries are pulsing/twinging like they want to start back up. I hated the chemopause hot flashes, but definitely enjoyed not having to deal with a period. I'm gonna be pissed if mine starts back.
Aleve isn't helping for the aches, and that's my go to pain reliever. My bf suggested I take some of the oxy I have left over from my port surgery, but I don't want to go down that road just yet. Think I'll give the Claritin a chance and see if that helps.
Hope everyone is feeling better today.
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Yensmiles
We are going to pack a bag. The hotels up there are booked 3 colleges in the area. We would have to drive 1 1/2 hours to nearest town with hotels. She goes to school up in the Adirondacks.
I can almost taste chocolate today!!!!!'
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Kimmy and Radical2Squared I am doing the neulasta but I didn't with my first chemo and I ached and my bones and joints hurt so very badly starting a couple days after chemo. From the second chemo on, I had the neulasta and took the Claritin and my aching was not bad at all..So I wonder if that is not only helping the neulasta pain but also the aching I had with the chemo .It cant hurt to try..
I have nail bed pain too , and one of my big toe nails has lifted..ugh. My finger nails all hurt when I touch them and I can see changes in them, a purple area and a dent/ridge across each nail.
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Mompv, oh dear, out of rooms! hope all goes well then be it the journey or getting a hotel in nearby towns..
Islandmama, my period did "pause" or skipped just one cycle.. it's back now.. though less heavy as before.. and i'm actually relieved!!!
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I've had two periods since starting AC. They were only 3 1/2 weeks apart. Today is 4 weeks and no sign so far. I've been getting some warm flushes the last two days so maybe I'm in chemo pause!?! Who knows! I didn't expect to have to keep shaving my legs either!!
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for those if you on neulasta I found a copay assistance program. They pay up to 5000.00 in a 6 month period.
Www.amgenfirststep.com
Your cost is $25 per shot!
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ok, so the nurse practitioner at my oncologist office and I just had a long side-effect conversation on the phone. I did my first Taxol Tuesday almost a week ago and I finally think I'm pain free though my tummy is a little unhappy.
My 2 big complaints were the nail bed pain and the roaming body pains. I explained that when the nail bed pain started to feel like it was going away, the excruciating body pain (including that pulsing ovary feeling) started.
The nurse was not very concerned about the body pain except that it hurts and she did say that since Tylenol haven't helped there were other drugs that could be given to help with it, though she didn't mention which ones. She did say those roaming body pains are usually worst after the first Taxol infusion and do get better.
The nail bed pain was a big concern for her. She did say neuropathy is often a tingle, but it manifests as pain too. She asked how many days I had it for. My answer was 2 or 3. She said there would be changes in my nails (as we've discussed on this thread and others) but that this was a se they would like to keep an eye on as it is usually cumulative. She said there are patients that come in two weeks later with lasting effects from nail pain. As I type, I notice a few of my fingers are numb at the tips. I hadn't noticed that before! Maybe I'm creating my own issues at this point!
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Islandmama, I still get my period every month....no chemo pause for me unfortunately.
I have been waking up with headaches every morning for 2 weeks, which go away once I'm up. So, of course, I google it and that's a common sign for brain tumors. Gulp, freaking out. Will discuss with oncologist on Wednesday. I am a person prone to headaches so I'm trying not to go there!
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Mompv, I hope you can find a room to stay over! My kids also went to college upstate NY and rooms seem to be reserved so far in advance! You can sometimes get in if there is a cancellation, so call the hotel/motel directly to check!
Radical, I am one week after my first taxol and also feel the pain is somewhat better, but stomach is not happy today, either. I thought it was what I have been eating, but maybe not. I hope that your nurse is right about next taxols to be better re pain. I've been relying on tylenol, but my oncologist gave me a prescription for hydrocodone, just in case.
Along with my breasts, energy and hair, - I miss loving my morning coffee! How can it not taste good to me anymore?
NY weather has been gorgeous! That does help!
THANK YOU ALL for being there to commiserate with and wishing you a GOOD DAY!
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radical, good to know about the nail bed - it's primarily my big toe and has finally subsided a bit, but I am going to email my oncs office. I think my nightly soaking is helping.
Canuck, don't go there! Our bodies have so many things/drugs/side effects going on that weird symptoms are bound to show up. I tell you that, but every time my hip cracks...but I banish it from my brain immediately. Already have too much negativity swimming in there these days.
No period since the 2nd AC, but I'm 49 and it should be leaving! And I don't want it back!
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had taxol#2 today. PA told me the SE should be better this round since they gave me a higher loading dose last time. So the acne rash should disappear, BTW that's from perjeta not taxol.
I haven't had a period since my first AC. I would gladly give up these hot flashes to get my period back!
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Good info Mompv , thanks for sharing!!No periods here. Was on my period when I had my first chemo, but not had one since then. NOT complaining about that..lol
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hmmmmmmm given the choice between hot flashes and my normal cramps period....the jury is still out. I'm praying I never get my period again...which basically guarantees I will unfortunately!
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After my 4th TCHP treatment on August 7th my husband and I went to the beach for a week. We had rented an ocean front house with the plan of having family for the week....but that was many months ago before my diagnosis and the beginning of the BC journey. We decided to go alone and just try to relax and enjoy the week. That first week has been hard for me every time with all kinds of stomach issues, weakness and sleep issues. It was the same while watching the ocean, but what a wonderful distraction! Back home now to reality. I know I'm feeling better because laundry and dust and such bother me these days!
Treatment number 5 is next Thursday ( the 28th). My fingers, too, have begun to be tender on the nail bed side and I feel like some of my touch sensation on the fingertips has been dulled. Diarrhea is a constant. Immodium slows it for part or most of a day, and then it is back, no matter what I eat. That first week I haven't found anything that tastes good to drink! I hold my nose and drink ice water slowly. I continue to burn each time I urinate, but the squeeze bottle of cool water ( mentioned here some weeks ago) gets me through it. A urologist wanted to do a look inside my bladder, my oncologist ( who sent me to him) preferred that I wait until chemo is done. I know it is an external burning, so we are waiting......all the urine tests come back with no infection. I still think the chemo drugs burn that tender tissue, just like they mess with our moths, stomachs and every other susceptible place!
After my chemo slows to just Herceptin until next June, I'll be having surgery, then radiation, if I stick to the lumpectomy plan. Are any of you having surgery AFTER chemo? I waffle a bit between mastectomy and lumpectomy. My surgeon thinks lumpectomy is appropriate. I don't see having reconstruction. I would, on the other hand, welcome a reduction on the healthy breast if there is discrepancy after the lumpectomy.
I hope everyone has a decent kind of day today! Cooler days are surly around the corner!
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Fionascottie I did surgery before chemo, but I did go with lumpectomy and oncoplasty . both breasts had to be done to make them match up lol .. I had reduction and lift. It's pretty extensive surgery but I am glad I did it. For me, the order was, tumor removal, lymph node removal, port placement by BS then PS stepped in and did the oncoplasty part. Surgery was about 6 hours . The day of surgery, I went in early to get a wire placed into the tumor to mark it I guess and then some injections with the radio active stuff to help find sentinel nodes...then straight to my room at the surgery center. it was an overnight stay. My breasts do not look awesomely beautiful in the flesh... lol but they are nice and small and perky and my clothes fit better...lol I am sure over time when they settle and the scars heal.. they will look better.
A beach vacation sounds wonderful!! I go for number 4 TCH tomorrow.
Hope everyone is doing as well as can be expected with all we are going through!!!
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gearing up for cycle 4 of AC tomorrow!
Noticed the last few days that I haven't had much of an appetite. Just not hungry. Nails are hanging in there though! How is everyone else?
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Islandmama, Good Luck tomorrow - I'm Friday. Last AC for us both!! Whoot, Whoot!!! Halfway!
So I met with an oncologist today (not mine cuz she was on holidays). He was very rushed and said my headaches did not concern him although it was an unusual SE. He said if it was cancer I would have them all the time..they would be relentless and progressively worse so that's a relief!
I also have very watery eyes all the time..very annoying!
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canuckmom,
My eyes water most of the time...the rest of the time they are dry as a bone and hurt.
I'm wiping my eyes so much, I have sores in my crow's feet...like chapped lips!
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Yay Islandmama, last AC! I was so happy to be done with that....my nails survived although they did get dark at the base. Taxol has not made my fingernails worse and in fact the dark appears to be growing out. My big toenails hurt with Taxol, acutely for 5 days and then just annoyingly, but no lifting (I've done 3/4 dose dense Taxol)
Fiona, I had my mastectomy first, no reconstruction and I don't think I will. Right now I'm over being sick and can't fathom another surgery, so that may change. It is a total pain to wear a bra and foob all of the time to not be lopsided and think it would almost would be easier if they were both gone (which I wanted but my surgeon didn't think we should "disrupt that field") glad you had a nice beach break!
Jdmac, how many TCH do you have?
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CanuckMom and Radical2Squared My eyes water all the time too. I didn't know if it was allergies.
Islandmama2 and CanuckMom Hope all goes well tomorrow with your last AC ..good luck!
Canuck, that's good news about the headaches!!!
Bow1965 I have 6 total TCH then will carry on with Herceptin only every three weeks until June.
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i remember having irritated eyes that begin to tear on its own..somehow putting an ice pack around the eyes helped me! i only had that for a few days during the 1st infusion, and each time i put an ice pack, the irritation goes away.. sometimes i just roll an ice around the eyes!
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Fiona- I have also been battling my own "diaper rash". Mine set in when my mo gave me a fluid pill last week because my weight was going up fast. Sooo when the pill started working I started getting raw. Chemo urine is strong and it requires diligence I am using baby wipes each time and then rotating between powder and destin. It is getting better the farther away I am getting from my last treatment. Good luck. It seems like chemo effects every single aspect of our body functions! You and I are about the same place in our treatments and your symptoms sound like mine so I totally relate to how you feel. Hang in there only 2 left to go! And then maybe we can start to feel more normal. With any luck I am heading to the beach tomorrow.
Take care everyone and have a great Thursday!
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I've not posted much but wanted to check in and say hello!
I've had watery eyes too, especially during Herceptin weeks.
I have my last Taxol next Wednesday, Aug 27th. If you are having tummy trouble and neuropathy, don't forget to try the L-glutamine powder (30 g a day 15 morning 15 night). I bought the Pure Encapsulations brand online. I'm sure you could get others that work. I just wanted to be sure that I got one that didnt have a bunch of other stuff mixed in. 't has saved me with the Big D and also I've only had very minor tingling in my fingers that lasts only for a minute or two for one day per cycle. I swear by this stuff.
I'm on to lumpectomy mid-Sept. Trying to get tips and hints from anyone who maybe has already had their lx. Also looking for AC tips. I bought some high powered ginger pills from Aphios corp. that were used in a study to prevent nausea with chemo. They are called Zindol DS. Not cheap ($40 a bottle and use a bottle per each cycle) but I'm going to give them a try when I start AC in October. You're supposed to use them along with the anti-emetic drugs. Have any of you worked while on AC? I teach elementary. I'm planning to take the first cycle off on days 1-6 to see how I react. Then I'd like to try to work some for the remaining three cycles.
We've come so far in 8-12 weeks. I think of all of you even though I don't post here much. Linda
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no chemo for me today. Neutrophils were only 1.38 (up from 0.77) on Tuesday. I am going back for a redraw tomorrow so hopefully will get chemo then. They offered me 75% of the dose today but would rather get the full dose tomorrow!
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Islandmama - that sucks! Well, we'll be chemo buddies tomorrow then (as long as my counts are good). You are brave, I think I would have gone with the lower dose just to get it over with!
Yep, my pee also burns me 'down there'. I have been using my daughters diaper cream - zincofax.
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OMG!!! I just found out someone at work was just told she had mono and she's going to work tomorrow. So I called my breast center emergency number and the dr said to stay home. Especially since I just had taxol treatment today! I am freaking out here!
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mompv don't dare go to work! That person isn't being very responsible toward you or any of her co workers geez!
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