August 2010...anyone starting chemo besides me?!
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Jsw19 - thanks for asking about the neurology appointment. He said I have 'significant' neuropathy. I called the onc's office and they are discussing things. I'll let you all know what they come up with. The neurologist described it as a 'dying back' of the sensory nerve cells. It was unclear how it resolves for each person over time.0
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All- Just on the sleep thing...my doc prescribed some pretty heavy sleep stuff when I first got diagnosed b/c I wasn't sleeping at all. I hated them. I went, instead, to the pharmacy and bought some Nytol. It's fantastic and over the counter. I asked my doc about using them he said fine, absolutely no problem. So now I use them when I know I'm going to have a rough night of sleep ahead. Just in case anyone is inertested!:)
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Omaz - let us know what they tell you to do. I've been put on Neurontin for the neuropathy, which has helped immensely. I also have my acupuncturist work her magic (which involves needles near the base of my fingers and toes).
I have high hopes that the neuropathy will reverse itself once I'm off the Taxotere - end of November, baby. That's next month!
Best of luck to you. I hope they can help!
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I AM BAAAAAAAAAAAAAACK (THINK POLTERGIEST)
tx 4 went smoothly, got my shot today... dr does want me to pinpoint when/why my hip gets achy just in case its the cancer acting up.... but other than that peachy!!!!0 -
Yes, I'm going to try the benadryl tonight. Right now they feel more "achy" than the shooting pains. We'll see. I just do hope it resolves soon - I just hate having "things" like this that I'm worried about!
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Chemo #4 (first Taxotere) done and one day out--feel good all day. No SE at this time--Doc said they will come about 48 hours later so I guess tomorrow they will come? I am not on Neulasta at this point, Doc will only prescribe if needed and my blood cell count has stayed good throughout. I have blood test next Fri and they will see then if required or not. Keep you posted on my SE.
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During my 1st Taxol tx today I had an allergic reaction. No breathing problem just redness in my face, neck, shoulders and a hot flash. Onc decided to stop the treatment and try taxotere starting next Friday. Now that puts my end date in Janurary
. I forgot to ask what happens if I am allergic to taxotere? Anybody have a clue?0 -
Good Evening Ladies, I am wondering how our medical bills compare, I was going through mine last night and came across my first day of TCH 5 hours outpatient. My totally for that day kind of blew me away $20,078. pretty unbelievable. Just wondered if anyone cares to compare bills? Yes this was the total for blood work and TCH. Good thing my life time benefit is $5,000,000. IDK but it feels like highway robbery.
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Good Evening Ladies, I am wondering how our medical bills compare, I was going through mine last night and came across my first day of TCH 5 hours outpatient. My totally for that day kind of blew me away $20,078. pretty unbelievable. Just wondered if anyone cares to compare bills? Yes this was the total for blood work and TCH. Good thing my life time benefit is $5,000,000. IDK but it feels like highway robbery.
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Wow. Can't believe that total, IowaSue! We don't ever see our bills like that in Canada. But it's really interesting. I knew it was expensive, just didn't know how much.
I actually came on here to pose a question about SEs. I'm developing mouth sores all along the edges of my tongue. Have any of you had this and what did you do? Thanks all. Sleep well.:)
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Texas and Rachel: congratulations on finishing tx 4! Good for both of you and may you have no new SE!!!!!!
Iowa: I guess this is the difference between the Midwest and Northeast: my bill was for $31,000. I was stunned. Probably the best thing that is going to happen for me is I will get a different job and have a new healthcare provider so I can avoid the lifetime cap with this policy! It is stunning. My bills are in excess of $300,000 and that is going to explode to nearly $500,000 by the 1 yr mark.
Sweeney: yes, I did have those sores. I rinsed with peroxide. It seemed to help but they did hang around for about a week. Under normal circumstances I would use Blistex's Kanka but, as we both know, there is nothing normal about our circumstances!
Zenith: I am so sorry you had an allergic reaction. I think reactions are the scariest. I wish you well with switching to taxotere. Keep us posted.
Calamtykel: I hope you are feeling better since getting off the Levaquin. Let me know how you are doing.
Wherria: I hope you are not feeling lonely!!!!!! Join your cyber friends!
Omaz: I am sorry to hear of your neuropathy. I do believe, however, that will correct itself when chemo ends. Good luck to you.
THE YANKEES WIN!!!!!!! Now I am off to meet the sandman!
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I believe I have found what helps take away some of the pain I'm having - benadryl. The advil isn't helping, even three of them. It's Saturday and my taxol was Monday - I really hope this resolves soon! I slept very well last night - up peeing every 2 hours but fell back asleep. Benadryl wore off at 4 and my legs were very painful - took another dose and I was okay.
Now I'm up and I think it's not as bad as yesterday. But I'm worried. Taxol pain should resolve by day five or so and I'm still getting jabs and aches . We'll see what they have to say Monday.
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Sweeney - the biotene mouthwash helped me with the mouthsores0
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Morning everyone!
Calam: I had the leg pains on Taxotere. Stabbing pains in my ankles and hips mostly. They usually faded completely after about a week. At first I thought they were from the Neulasta but I didn't have Neulasta with my second treatment and still had the leg pains, although they were not as bad. So, I think a little was from the Taxotere and a little from the Neulasta.
Iowasue: The medical bills are insane! It was $3000 for the Taxotere alone each time and the Neulasta shot was also $3000. My insurance company tried to get me to pay a 20% coninsurance on the chemo drugs, but luckily my HR department was able to fight them on it and make them pay the full claim. Could you imaging paying $700 X four treatments to feel like CRAP! I used to think I had crappy insurance because I have one of those plans with a $1500 deductible. Then I got cancer and realized that $1500 is nothing...because after $1500 the insurance pays everything.
Sweeney: I used baking soda and water mouth rinse for those. Throughout the whole chemo process my tongue was whitish, but I was able to keep the sores away with the baking soda rinse. Just now, two weeks out from the last treatment my tongue is finally almost back to its normal pink color. My oncologist also said she had a "magic mouthwash" they could give me if I got sores, so you might want to call your onco..they might have something too.
Zenith: I had a mild allergic reaction to the Taxotere each time....itchiness and hives, but they just infused it slowly and watched me closely. Throughout all four treatments it never got any worse than itchiness.
Omaz: What does the neuropathy feel like, is it pain or numbness? I am now two weeks out from my last infusion and I am a little worried because the bottoms of my toes and fingers feel a little numb. I can feel them, the sensation is just dulled. And to boot, my fingernails and toenails hurt! Feels really odd.
Just a note for all of you guys who had been talking about the smells. My youngest has a really keen sense of smell. We joke with him often that he is part dog. Anyway, after reading Sweeney and Lizzymacks comments the other day, I asked him if I smelled normal to him. The verdict is that he says I just smell like Mom..nothing weird. So hopefully there really is no chemo smell.
Hope everyone has a nice day today. Just think, we are all one day closer to being done with all our treatments!
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sptmm62 - For me there is tingling and numbness so far. Toes, bottom of feet, fingertips. Then there is tingling in forearms and calves, with muscle twitches. My onc said it is due to the taxotere. Hope that helps!0
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Cost - I was floored by the cost of the chemo! Herceptin, neulasta and taxotere are three very expensive medications. I don't know how someone without insurance could possibly pay for chemotherapy.0
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Omaz Sorry to hear that the neuropathy is "significant" but hopefully your onc will have a solution or plan since I think that is a relatively common SE.
Calamtykel Interesting that the Benadryl is helping with your pains. Hopefully the pain will subside soon but in the grand scheme of things Benadryl is not so bad if you end up needing to take it for a few days after each treatment to manage the pain.
Zenith Due to the severity of my allergic reaction to Taxotere my onc was not even willing to try Taxol but has suggested Abraxane. I still have one more AC to go before moving on to the Abraxane. So that is one possibility if you end up allergic to Taxotere as well.
Sweeney I had the beginnings of a mouth sore last week and when I saw my onc he recommended a rinse of baking soda and water or salt and water 3 or 4 times a day. I have seen here on the boards ladies recommending a rinse with both baking soda and salt in water. Biotene is also good (recommended by my dentist) and I have also heard that there is some sort of prescription mouthwash you can get from your onc if none of that helps.
Costs This is so interesting! Are you ladies getting your treatments at a hospital or a doctor's office? Mine is done at my onc's office, totally separate from our local hospital. Anyway, I have only gotten bills from them for my co-pays ($25 each visit, they never collect it when I am there like all my other doctors do) but I get monthly statements from my health insurance that say how much they get billed and how much they actually pay. Perhaps all of you US gals know this, but for our Canadian friends - doctors offices have contracts with various insurance companies that set the rates of how much will be paid for specific services (usually quite a bit less than the stated charge) and what the patient's co-pay will be and then the rest is somehow magically waved away. My statement says that my first AC chemo was billed at $1,180.08 and my insurance company paid $588.18. I paid my usual $25 co-pay for the doctor visit and due to having already met my deductible and out-of-pocket maximums, I don't owe anything else for that treatment. I think part of it also has to do with AC having been around a lot longer and as with most drugs, they have gotten cheaper over time. When I had the Taxotere I did get a bill from my prescription drug provider for a $50 co-pay and also a $25 co-pay for each month's worth of Herceptin but my onc's office said something about the AC doesn't need to be ordered from my prescription drug plan so I don't have co-pays for that. But still I can't understand how my insurance is getting billed at $1,200 and some of you are seeing bills of $20,000 to $30,000!
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jsw - I was floored by what the insurance company was billed, I am not getting the bills myself! And, it seems like the insurance pays about 1/3 as you said.
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jsw - my onc did mention abraxane but said it was very expensive and my insurance wouldn't approve it. I found this quote on this site when i did a search - "The drug, moreover, is not approved except in people who have advanced, metastatic breast cancer. More practically, the drug is usually not covered by insurance except in rare circumstances in people without metastatic disease". So I would be interested to know how your onc got it approved. Costs - i haven't looked at our benefit statements in detail except to look at the bottom line - patient pays and it is always zero. I had argued with the office from the beginning that the insurance covers at 100% but they still charged copays. Now we should have about $120 credit. I am planning to call them next week to see when we will get an itemized bill and repayment.
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Costs: I got a statement for chemo and it was $15,000 (FEC), the Nuelasta the next day is $3,000 (this is what was billed, I can't remember what they paid).
Rachel: I hope you continue to do well. I've talked to a lot of people who did Taxotere, since I'll move on to it next, and a lot of them had a fairly easy time with it.
Sweeney: I too rinsed with baking soda and water. My mouth was sore, but I didn't develop actual sores, thank goodness. The small bottle of biotene mouthwash the cancer center gave me came with a small tube of biotene gel, sort of like oragel I think (the stuff for tooth pain), but I haven't had to use the gel so I don't know if it works.
I spent the morning at the hospital again today. My temp went back up to 101.7 and wasn't responding after taking 2 ibuprofen and then 2 tylenol. They did a chest xray and blood work, all of which looked good and my temp finally went down. So since we are doing the IV antibiotics at home, they let me go. I got home in time to watch my Auburn Tigers kick Arkansas's butt (sorry if any of you are razorback fans).
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Hi everyone--Chemo #4 (First Taxotere) done on Thursday. Feeling pretty good--no real SE but may be too soon to tell. Doc said main side effects come about 48 hours later. I do notice some soreness in my knees--not sure if that is the chemo. I'm not on Neulasta as Doc feels that I don't need it at this point. They will check my blood levels next week and see next steps.
Sweeney--I rinsed diligently with biotene toothpaste, mouthwash and club soda for the first 2 chemos and got lazy on the last and got some sores. Doc prescribed "magic mouthwash" this past week but sores were already healed but he said to keep aside as sores can sometimes get worse on Taxotere. I don't think it "cures" them but just freezes them so you can eat etc. Hope that helps.
Ladyinbama--so far so good on Taxotere--I will keep you posted on any SE.
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I need that "magic mouthwash"......I haven't had any sores so far, and this is with doing nothing in terms of preventative procedures. Now? Ick. I feel like my tongue is swollen with cankers. Rachel and LadyinBama- really, having just got off Taxotere, I can honestly say it wasn't too too awful. And I did have an allergic reaction during the 2nd dose and was able to continue with IV benedryl. I didn't notice too many differences between the SEs that all the AC folks were discussing as compared to the Taxotere stuff I was going through. I"m sure you'll both be fine. And Rachel if you're not on Neulasta right away then you're 10 steps ahead- b/c Neulasta is awful.
Sleep well everyone.
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My insurance has $1500. deductable and they pay 80 % til I have $3000. out of pocket then they pay 100% but really should I have to pay $3000. when they are making $150,000 to $200,000? I don't know sounds like a rip off. Glad I have insurance, it just seams like they would wavier the $3000. when they are getting so much from the insurance comp.
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Iowa: I met my out-of-pocket back in May. It was $1000. What I am seeing is statements from my insurance company for chemo. They were billed $31000 and the hospital was paid $19000. I was so stunned I cannot even tell you. At first I thought it was a bill for the port placement but it was for chemo. I was responsible for my copay of $15. I cannot believe the costs. I don't know how anyone without insurance could even get chemo. Somehow I don't think it would be possible.0
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Morning everyone!
Sweeney: Did you call the onco? They have prescription stuff that they can give you before the sores get out of control. Call today, no need to suffer!
My kids and I are off to walk the 5K American Cancer Society Making Strides walk today. Hope I make it, my legs are definitely not at their strongest!
Hope you all have a SE free day.
Debbi
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Sweeney: I have had terrible mouth sores all the way through, but the worst came with the first treatment. With that one the entire inside of my mouth was covered with sores, and down my throat. Right now, I highly recommend the saltwater with baking soda: 1 quart water with 1 teaspoon each of baking soda and salt. Use it at least 4 four times a day, but there's nothing to stop you from using it as often as possible, especially after you eat. My onc prescribed the Magic Mouthwash, and it did help dull the pain a little so I could eat, but the relief didn't last long, so I would use q-tips dipped in anbesol and apply them to the entire inside of my mouth. It's not the best solution because it can dry things out which isn't the best, but I had too. It was just too painful. Then my onc prescribed a gel called Gel Clear or something like that. That did more to help them heal (the Miracle Mouthwash doesn't actually help clear them up: it's a mixture of benadryl, lidocaine, and maalox of all things -- you do not swallow it). But the Gel Clear also didn't help much with the pain, so I went on using it. Then she prescribed an antibiotic wash, the name of which I can't remember -- something "statin" -- because they were getting infected. That helped my tongue feel better, but I continued using anbesol, and she said that was okay.
The important thing is that you have your once look at your mouth, especially if you have any fever, because they can get infected. Good luck with them, and I'm sorry your having this problem. It can be really painful. Also, don't eat anything hot or anything too cold. Stay with soft, cloe to room temperature foods.
My latest problem is my fingernails. The thumbs and first two fingers on both hands really feel like they've been crushed I was out for coffee yesterday with dg and a friend, and I couldn't even open a sugar packet they hurt so bad. They're really dark in the nail bed with white splotches which indicates infection. And the cuticles around them are all red and swollen. My onc put me on yet another antibiotic. Who would have thought I would need antibiotics for my fingers??
Hope everyone is doing well. {{HUGS}}
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Re costs - we're having a garage sale today to just try to get some bills paid! So far only sold about $200 -but a dealer we know is on his way and he'll take some stuff, I'm pretty sure. This is insane - last time we had a sale, we made over $1200. Today, nobody comes.
DH told me to out lie out by the road with my hat off and see if people will stop.....
Re leg pains. They were horrendous but they are all gone now! I'm so relieved. It was scary - I hope next time is not worse! I slept 8 hours last night and only needed one benadryl to keep me asleep. Tonight I'm going to try to go without any.
My congestion is really good except when I take a deep breath, I can hear a little vibration or wheeze. But not coughing or anything so I'm just going to hope to ride it out.
Well, at least it's a sunny day - even if nobody shows up, it's a nice day to sit in the driveway!
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Zenith I have not started the Abraxane yet so I don't think it has been run through my insurance yet. To be honest I am a little concerned that they will refuse to pay for it because it is only approved for metastatic BC but this is the plan that my onc suggested and he didn't say anything about the insurance being a problem. I am planning to ask him about the insurance stuff at my next appt. I know that my insurance company will consider things outside the normal range if a doctor provides a letter of "medical necessity" and since in his words the Taxotere almost killed me I'm guessing he will write a convincing letter to the insurance company! But I'll let you know how it all goes.
I hope everyone has a relaxing and SE free day!
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Good morning chemosabes!
Calamtykel: I don't think you need to fear the next taxotere/ol as I am only pretty sure your pains were from Levaquin. Good day for a tag sale.
Sweeney: canker sores are the byproduct of a hampered immune system generally. I used Biotene etc... and nothing seemed to help. I pretty have it all down to a science now: the first 10 days are a general malaise washing over me and the next 10, leading right up to my next tx, are headaches and canker sores!
Sptmm: Good to hear from you again. I am glad you are doing well. I am sure you are going to breeze through taxotere as you breezed through chemo
Hope you and your son are having a nice day today.Rachel: I hope you don't have any SE on taxotere and you are having a good weekend.
I hope you are all having a good weekend and do something good for yourselves today even if it means relaxing in a hot bath!
Happy trails-
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THE WEEKLY POEM...this is a good one
THE HURDLES
By Carrie Camp
My knees are sore.
My shins are too.
From running hurdles
I'm black and blue.
I've braved the cold.
I've braved the heat.
Trying all the while
Others to beat.
You wonder why
This is my task.
"Why jump the hurdles?"
Is what you ask.
I like to run
The hurdles so high
Because I know what
It's like to fly.0
