Anyone on just Taxotere and Cytoxan?
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Firni and florbo - Thanks for the encouragement. Annabelle has one more infusion on July 2, but the Onc says no more Taxotere due to the toxic reaction.
Her hands are still a bit swollen and itch, but the Medrol (Prednisone) does seem to help. Yesterday was only day 1 of that dose regimen. She doesn't have any of the palmar problems - just the swelling on the tops of the hands and the itching between the fingers - she was up at 5AM this morning putting ice packs on her hands to overcome the itching.
Onwards and upwards - one day at a time.
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florbo, so sorry to hear all that, hope you feel better soon
DUTCHinAtlanta: no more taxotere sounds like a good idea
afighter: everyone is different, and yes its a good sign. The tastebud thing does change things. Can you try putting a little bit of juice or lemon/lime wedges or something in the water to help? Some people go to gaterade or other sport drinks but you really have to watch the caolries in those and watering them down may be best. The mistake I made was in forcing myself to drink only water and not taking advantage of other thinks like jello, soup etc. Got to the point at the end that I'd want to gag thinking of water.
pshelton: lots of support here, we'll help you get through this in the best way you can
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I am on day seven and doing remarkably well. Was glad to be through with the steroid pills as they made me flushed and hot. I've been adding electrolytes to my water or drinking Gatorade to replenish electrolytes the Chemo depletes and it has helped a lot. Without it I get terrific headaches. I also receive acupuncture which really helps with the side effects so I highly recommend it if you have it available to you. Also, don't try to go without the antinausea meds....they are expensive, but you won't be sorry. I did not have a problem with nausea as long as I followed the prescribed regime. And I was advised to eat small frequent meals which has helped. About day three or four I developed a thick hairy tongue which totally tainted all fluids and some foods. I have been rinsing and brushing my tongue with a mixture of 1 tsp baking soda, 1 tsp salt mixed in 1 cup of water. I just keep it by my sink so it's available. Seems to help.
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afighter - I am day 12 after treatment 1 and the only SE's I experienced were fatigue and some minor muscle pain on days 2 & 3. I don't quite have the energy I used to and tend to go to bed earlier, but that's it.
I went on vacation last week to Miami Beach, had a blast and felt good. Now, back to normal I too am trying to stay consistent at the gym, but I just got clearance to go back after surgery so I'm doubly weak! It will definitely be slow going for me. Anybody else lose your taste for coffee? Now that almost made me cry...
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Lynn, losing the taste for coffee is real common. It almost made me cry too. But I did enjoy tea a lot more than I had before chemo. Once your taste buds come back, you love your coffee again. The taxotere will just plain make your muscles weak. No amount of exercising will prevent it. Keep doing as much as you can for as long as you can, but don't be alarmed or disappointed if it looks like you're losing ground. Strength and energy comes back when taxotere is done.
Pap, it sounds like you're doing everything right and keeping ahead of the SEs. Good for you!
Dutch, is the Medrol pack getting rid of Annabelle's edema?
Paula, try not to think about your tx starting in two weeks. Right. Anyway, deep breaths, you'll be able to do it. Take the advise of people on these boards. Don't be afraid to take any and all meds available to get you thru and stay ahead of the SEs. How many rounds?
afighter, I was also very glad to have my port. I did notice that with each round, it took longer to feel like normal again. I also got one odd SE with each round. A different one each time. What got worse for me with each Tx was the fatigue and muscle weakness.
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I loved my coffee and it was hit and miss depending on the day after each treatment as to if coffee tasted good or like pond water. Try a cup each day and if it tastes bad try again the next day or two. It does improve. I also loved my diet Pepsi and still have a problem drinking more than one soda a day because it still gives me heart burn. Hot or cold tea (regular or flavored) seemed to work pretty good for me any-day.
Nadine
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I couldn't drink coffee during my treatments either - and it was pretty sad! My DH would brew a great smelling pot and yuck! I hated the tasted. I could drink hot tea, which was better than nothing. Your taste for it will come back - mine did in the 2nd week after each treatment and then when you are finished, your tastebuds slowly come back to normal and you can eat and drink everything you couldn't stomach or deal with while on treatment.
It does get better!!
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It still seems like most things don't taste right, especially my water. I usually drink a lot of water, and between the taste problem, and my queasy stomach, I've had trouble drinking as much as I'm supposed to. I find ginger ale and orange gatorade do the best for both, of course they have more calories, but what the hey.
Nadine54, I've been having hot flashes off and on for a few years, I thought it was the "real" hot flashes to begin with, and then found out it was actually that I had a heart arrhythmia. now I just have them all the time, but my arrhythmia got fired up during surgery, and from the chemo, and my cardiologist has to change my meds, told him the other one was making me feel worse but he didn't believe it until he saw it, so my heart rate/rhythm is all over the place, which doesn't help the hot flashes. I had a hysterectomy in 2000, but still have my ovaries so I figure I'm going to go thru the "change", I'll just not know when it happens. I too have blonde eyelashes and eyebrows, so might not miss the eyebrows at least, but I do look pretty scary without mascara, and when there is nothing to put them on, well I imagine I'll be pretty scary, but this too will pass. It has been so incredibly hot lately I seem to spend most of my time with the fan blowing on me. The disease management nurse for my insurance company told me a few years ago, because I have multiple sclerosis and the heat makes it worse, if I had to be out for a while to put my feet into an ice chest with ice and water to cool my body temperature down. I figure I'm such a klutz, I'd probably forget my feet were in there and stand up and try to walk and fall flat on my fact. I had some cooling things that you could put on your neck and wrist, that you soaked in water, but they honestly didn't seem to get cold enough, so I think I'll stick with the wash cloths in the freezer. A lot of them symptoms I have with the MS are the same as the SE for the chemo, weakness, burning, tingling, so I don't really know what it's coming from, just tend to ignore it all. I figure I have 3 or 4 more days until my hair falls out, and haven't gotten a wig yet, it's so hot even trying one on sounds uncomfortable, maybe when the hair is gone
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hi everybody. i've got a question about how long it is taking people to feel "well" after the final round of chemo. my last TC dose was almost 4 weeks ago, and although my hair has begun to grow back (i'm attempting something other than self-pity and am calling myself a chia pet), during this past week or so, the fallout seems to have begun all over again. what the hell??? i'm starting a 4 week series of rads a week from today and have one of those crazy summer colds right now. is there anyone who can reassure me about the ongoing hair loss thing? it really is going to stop falling and stay on my head long enough to grow in, right??? i've bypassed the entire wig approach, by the way. and my eyebrows did a very belated disappearing act too.
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elizrosner,
I am 2.5 weeks out from my last TC and am having some stubble coming out when I shower. I know that I usually lose some hair a week or two after an infusion, them get some new growth in between treatments. My onc when I saw him on Friday, said that the fallout is normal and that I may start seeing some new growth around 6 weeks. My eyebrows started thinning along and my eyelashes are dropping. SIGH. I was so excited thinking I wasn't going to lose them--only to lose them after the last round!
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Firni - The Medrol is working - slowly, but it's working.
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DUTCHinAtlanta: happy to here she's finally getting some relief
elizrosner: it will get better. I drove my Onc nuts asking her that, she kept asking me to be patient and I just wanted to feel better. It took 3 months to start feeling better and to have my muscles work better. (remember though I had a lot of toxicity and really bad myopathy and neuropathy you may do better). I'm now 4 months out and can actually run a few minutes at a time and can walk everyday and do most of the yoga poses that I used to do. I finally went on neurontin for the neuropathy and I'm still limited in how long I can be on my feet. The hair is back but short enough everyone still asks if I had chemo. Eyelashes aren't as long as they used to be but theyre there, same with brows. My Onc told me it would take a year to get back to where I used to be. Luckily I"ve had some very understanding work colleagues. My endurance sucks, I just can't do everything in the day that I used to do. By the time work lets out on Friday I'm crabbing at DH for no good reason and just want to sit and cry I'm so tired. Chemo, the gift that keeps on giving
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Ah yes, kmmd, that is the perfect ending line! Elizrosner, I'm 9 weeks out from last chemo, exactly 2 months today (April 23) and just last weekend did my eyelashes fall out. I thought everything had finished falling out (I did get some growth right after the April 23 chemo, then that too started falling out along with a raging case of folliculitis that I know delayed my hair growth by at least 3 weeks), and the eyebrows thinned considerably at the time too. Now, I have good eyebrow growth, actuallly I'm having them shaped today just underneath, letting the rest fill in really well, and my hair, well, it wants to grow and fill up my head, yes it does (sometimes you have to encourage your head), and someday it will. Lashes falling out almost broke my heart. But, they too will grow back maybe in time for the holidays.
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I also finished my last chemo (TC) two months ago on April 23, and have noticed that my eyelashes are still thinning. Trying to put on mascara is totally ridiculous - it's like three little spikes on each eye! My hair is now about 1/4" long and my eyebrows are starting to come back. My theory is that the slowest growing hair is the last to fall out and the grow back. I guess all I want for Christmas is my two full sets of eyelashes...
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Calling all breast cancer sisters... can you do me a favor? I am trying to win a contest for my son (to meet his idol - Joe Perry, Aerosmith)... all you have to do is click on this link and click on the thumbs up icon to vote for our entry (legit site, legit contest, MOST deserving young man!)... can you please help me? Just trying to bring a little joy into my son's life after all this depressing /chemo stuff... voting is only June 23-26... please vote? It'll only take a second... help me bring joy to this boy!
Thank you so much! P.S. It says you can only vote once, but if you have more than one computer I think you can vote twice.. lolhttp://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576
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Dutch, I'm glad the Medrol is working for Annabelle.
Ladies, I still lost hair after my last chemo. I'm three months out now and my head hair is about 1/4 inch long but it seems to be staying. Eye bows and lashes come in and fall out again. My energy level and strength are about at my pre cancer levels, but there are some days where I feel quite fatigued. So I guess I'm not quite back to normal again. Hang in there. I was very impatient to get back to normal after the last Tx and got frustrated very easily. It wasn't until 5 weeks out that I really started to notice a difference in how I was feeling.
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Hi Holtbolt, how do you vote?? I clicked on the link but I'm not sure how I cast my vote. Is it my chemo brain???
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Holtbolt: I also tried the link and couldn't see where to vote.
Ever think of the words, "THE CHANGE". What a word...isn't life just one big change? I finally broke down yesterday and called the clinic so I could find out why I am so swollen..worse in the feet, ankles and legs. I think I got the stupid nurse (that I had during my last chemo, who I wanted so slap some sense into...thank goodness I got my regular nurse after I complained) who returned my call. I explained since before June 3rd the swelling had only been down one day and was getting progressively worse. I made a list of how I felt so I had my mind straight with the facts. This dumb nurse tells me that the swelling is because I am now in menopause...I was like what the hell...my mother didn't have that. She goes on to tell me about a diet I should be on. I felt like I was talking to not only a dumb nurse but I was questioning in my mind how she ever got to be a nurse in the first place. She told me to goggle something, which I did and found out this was for diabetics which I am not. She told me she would talk to the nurse practitioner and call me back...finally she calls. It was decided that they would put me on Lasik and Potassium pills...she told me stay close the bathroom. (Gee you think since Lasik is a diuretic...dumb nut...may have chemo brain but I am not stupid). She told me I needed to have lab work done to check my Potassium levels since one had not been done since April...fun more poking of my damn hand. She told me the order would be to take two Lasiks twice a day for a few days then drop to one two times a day...she told me it would clear the fluids out. I like the idea of getting rid of all of this extra weight...however I did Goggle Lasik and found the "normal" dosage is one two times a day. We will go later today for the blood work and pick up the meds. However I am real reluctant to take two pills twice a day. I told her at 55 all of my clothes are so tight and I look like I am full term and about ready to deliver a baby and that really looks sick. I explained the weight gain has been terrible and she explained it was all water. So I told DH when he got home the plan and reminded him how glad I was to have two bathrooms. So on that note I will let everyone know how this drug works.
On the hair note...I hope the lashes and brows don't keep falling out. I agree with Carolinachick mascara is a disaster.
So my wish list for Christmas is hair...even if that means shaving again, I just want hair. My head looks fuzzy. I keep massaging it a thousand times a day hoping that is helping. Wish I could put some Miracle Grow on it and give it a boost. Had thought of taking vitamins for hair growth but haven't done that yet.
I talked to my oldest daughter yesterday who is 36, she explained to me she thought she was starting pre-menopausal. I sounded like from what she told me she was indeed having the symptoms. I told her how fun this would be...from a distance we could have hot flashes together. She didn't see the humor. She often tells her 13 year old daughter, welcome to womanhood when my granddaughter moans about periods and such. So I in turn told her: welcome to womanhood.
Nadine
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Nadine, I think you need to complain about that nurse again. The comments sound a little mean or demeaning and they certainly weren't at all helpful she was off the mark and she shouldn't be saying such inaccurate things. I shudder to think of the day she just gives that info out and doesn't go check with the nurse practitioner.
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Nadine - I agree with kmmd! Tge doctor or nurse practitioner needs to know.
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You would think that just being around that nurse, her co-workers and supervisors would know how lame she is. I saw my gyn today and asked her about swelling from sudden menopause due to the abrupt depletion of hormones. She said no. She does hysterectomies all the time and you can't get more sudden than that. She has NEVER seen any one with swelling problems and she's been in practice over 20 years. And she's certainly not seen swelling with natural menopause. She didn't know what the correlation would be between a sudden drop in hormones and chemo tho. Maybe there's a connection, but more likely, I think that nurse of Nadine's is just plumb crazy!
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Nadine hope the lasik works and you are peeing all that fluid out of you -try and stay on top of it all
Kmmd You are the first person I have seen taking Neurontin. I was prescribed it after my first dose of Taxotere-had done 4x AC- my fingers went numb at the tips and all the nails red and sore-also slight numbness round the mouth and the feet were so bad I could only just walk But I am a bit worried about these tabs as the dose increased over 6 days and I have to take them for a few months and they are pretty strong with a whole load of se's. .My face has gone very red andthe backs of my hands.How are you doing on it -I would like to hear your opinion and problems when you get the chance to write.
Take care all
Anna
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Hi Ladies
Nadine - I have been following your post about swelling. If I'm missing something please forgive me but from what I understand you have swelling of the ankles, feet and legs. When I am at the oncolgogist's office about 1 week out from my chemo session they always ask to look at my feet for swelling. Is there a question about what is causing it? It is a side effect of the chemo (according to my np). I dont' know what they do for it but the cause was clear to me. Chemo does it, not menapause. What the heck is going on with that nurse????
Love to all.
Sukiann
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annadou: I've been on it a week, and so far think its a wonder drug. No SE's so far except its helping me sleep at night which I love because the insomnia and waking from hot flashes was killing me. I went on it for the neuropathy and help with hot flahes. Right now I take 2 300mg tabs in the morning, one in the afternoon, and 3 at night. The neuropathy is a little better and the hot flashes a little less frequent, but they get over sooner and I'm not getting the drenching sweats with them that I was getting. Plus, sleeping better. I love it. Normally they give effexor for the hot flashes where I go, but for me we tried the neurontin because of the neuropathy pain. I'll let you know if I start noticing any SE's
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Hi Holtbolt. I was just about to write, saying that I didn't know what to do once I got to the page, but then I saw the little thumbs up, and thumbs down on the extreme left side. So I clicked on the thumbs up, had to wait for a few seconds, then it said 'done' at the bottom left. So, I hope that was what I was supposed to do. Hope you son wins!
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BorneoMom, thank you!
Sukiann.... just click the link, then click the little thumbs up hand at the bottom of the story... that's it! When you click the hand, you voted! We are leading right now!!! If anyone else has a sec... please vote.. thank you!!!! BC sisters rock!
http://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576
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I voted yesterday and it let me vote again today! Good luck!
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Holtbolt: I founded twice...good luck! Found if you close the window you can go back and vote again!
Nadine
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Lost my post so will try again.
kmmd, swest, firni, annadou & sukiann: I am going to write a formal complaint and hand deliver when I see my doctor on July 22nd. I am going to deliver a copy to the MISTI administrator, my doctor and the nurse practitioner. I feel this nut of a nurse is dangerous at the very least. Its not only my health but health of others who she could be giving bad/false information too.
I had my blood work done yesterday and for once all went well. My potassium levels were in a good range and I got the okay to follow with the Lasix and Potass CHL XR (generic). We did talk to the pharmacist at great length about these drugs and my symptoms. He told us that I need to eat and not lay down 1/2 an hour after taking the potassium. He told me to monitor my blood pressure and weight daily. Since I have a history of high blood pressure which has been controlled on my newest BP medicine, he was concerned about the BP dropping to low. He told me to go ahead and start the medicines last night which I did., Each time I went to the bathroom I knew there was hope of loosing the swelling. As of this morning I had dropped 3 pounds and the BP is pretty high which is normal for me before taking my BP medicine.
I was never asked to see my feet or ankles at my doctor visits. I did however on #3 show the doc my hands and feet because I felt I had neuropathy which it was confirmed I do have. On visit #4 I again showed the doc my feet and ankles because they were swollen. He was reluctant at that time to put me on any medicines because of the past problems of my BP and the concern even with potassium that the levels would drop to low.
I don't feel or see any changes in the swelling yet but at least I have hope there will be relief soon.
DH is on vacation so he is near by just in case I run into problems with the BP dropping to low. Been there in the past so he knows what to watch for and do thank goodness.
Well off to my long day of bathroom breaks. Will post more later.
Nadine
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Hey ladies! The hair started coming out late last night. Right now it only comes out when I brush or run my hands through it but I know it'll start coming out on its own soon. I am 14 days from first treatment. Doc said 17 days, so I imagine it'll be gone by then. I'm having my friend buzz it tomorrow or Friday. It's now bothering me yet. We'll see.
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