August 2010...anyone starting chemo besides me?!
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Hi All,
Thanks for your support and understanding about the taxotere allergy saga. I ended up having a ten hour infusion in an allergy densitization unit on Friday and it went well. Might have been overkill, probably would have been fine with extra benedryl and roids, but it is what the allergist recommended, and it worked! My message is....don't fear any possible allergic response, because even though mine was dramatic, ultimately it was managable.
Ideas about tother things....Lizzie you mentioned a need for good scentless moisturizers. I have been using Kheil's for my face (expensive, but a little goes a long way) and Cetaphil, which is awesome, effective and cheap at CVS. Cetaphil was recommended by the LGFB woman, nad my daughter who has major dry skin issues.
I wish everyone a SE free, lovely weekend!
Elizabeth
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Yes, it was a good day for the sale! Made about $700 --yay! It seems that it won't make a dent in the bills but it's something!
I've felt good today - pretty much side effect free but just tired. I fell asleep for a little while.
Re side effects -does anyone else have a really runny nose? After my cold, my nose has been running (clear) like crazy on and off and it just feels so dried out! It's like the cold irritated my sinuses or something, and it's a on off thing. Wondering if that's part of the funny vibration I get when I take a really deep breath - maybe all the mucus membranes are just messed up! I've heard of nose bleeds and such on Taxol, but this is more like an irritation and runniness. UGH!
Having a great cup of afternoon coffee now that the "crowds" have died down and hoping I feel well enough this week to clean this house. I haven't had a "good" week in weeks since I had that awful cold on my last "good" week.
Just so very thankful that those awful leg pains were gone. Maybe they were from the taxol and maybe the levaquin but at least they didn't say. I got so frightened googling leg pain and levaquin - sometimes it's permanent. Sometimes it is with taxol too, which is also scary! Just drinking my beet and kale shakes with broccoli sprouts and hoping to keep my immune system boosted up for the remainder of this journey!
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Glad you are feeling better calamtykel and that the sale went good!0
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Hi everybody.
I finished the Z pak on friday and the cold is nearly all gone, after three + weeks it had better be!
My fist Taxol will be on October 25th now. I may be able to stop the Neulasta if I go to every three weeks for the Taxol to have time for my white count to rebuild naturally. I will know on the 25th if I canmake the change. While I dont want to need to go until the end of December I also am so weary of the Neulasta pains.
I need to wait to see what the Doc says about the change. I am so tired and weary, like I am 80 years old.and out of shape. I broke down and cried yesterday. We were to go out to eat with our DD and her hubby and when we got to their house I was just too ill feeling to go. I had become motion sick on the way over and then just couldn't sit up very well. I stayed behind and slept. I don't usually cry especially where my son in law and DD can see.
I know my labs were all good two weeks ago the day my chemo was cancelled, because they did the labs before I was cancelled. I want to feel the new normal again and not so wrecked.
I hope this is a time of good turn around, I am ready for it.
Have a wonderful day today and enjoy something you like.
Hugs Ginger
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Calamity I hope your next chemo is an easy one for you. You have been on my mind alot.
Ginger
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Calamity- good job on the sale, no i dont have a runny nose. now my cold/cough cleared up seems everything else did too... it might be allergies...
COSTS- i had typed out this really long thing yesterday and my booger son literally pulled the plug on the computer!
Basically what i've paid so far out of pocket is around $4-5,000 i havent totalled the recipts yet, but this is only for co-pays for all the office visists and scans and perscriptions...
my chemo bill finally camed yesterday and i owe $1400- (thatsd for the 1st 3 tx) strange because each treatment costs slightly less than the one before but it shows i am getting the same amount- i am still waiting on a drug company coverage for low income people though- so i am not sure if i'd be paying that eventually or not.
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thanks Ginger! I hope the next taxol is easier too. I wish I didn't have to have the neulasta shot with it! I'm sure that is not helping things. But since I have had a cold and I'm on the dose dense taxol, I don't think she'll "approve" my going without. I just keep thinking "five weeks left...." I am wondering if we have to have the neulasta on the last chemo?? I think if I'm feeling "well" that I'm going to push for that.
I used some saline in my nose and things feel a lot better. It's not so "dry". Chemo really does a number on everything, doesn't it??
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it sure does!!! chemo is so fluxuating though! i am getting chemo acne again after i didnt get it this last treatment...
i swear what clears up the nasal passages is salt water! i went to the beach very congested, swam a little and then poof i was cleared up! (well tons of snot flowed from my nose lol but that is just too gross!) anyhow i think they sell salt water nasal things (or they should!)
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My nose drives me crazy, it is either running or super dry, I know they say herceptin can cause this. I am wondering if it is because of loss of nose hairs?? I feel like sticking cotton balls up there to stop the running. Other than that I am enjoying a 2 week stretch of barely any SE !!! Enjoyed the wkend with my middle daughter and 3 yr.old grandson visiting from 4hrs. away. Really great wkend! now I better get some house work done. Wishing you each a no se week.
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Hi everyone--Chemo #4 -- 3 days counting and today, some leg pain--nothing major--kind of like crappy period cramps (from what I remember!). I am not on Neulasta so maybe that is helping with not as much pain. Doc said they will check my blood levels next week to see if it is required or not. In the meantime, told me to stay inside, try to go for walks, eat well and take some Tylenol if needed.
Sweeney--RE: Magic Mouthwash--my doc said you coudl swallow it--and it is on the label--but supposedly tastes like crap (no surprise). Doc said to swallow it if you feel them in your throat--it doesn't "cure" them but more "dulls" them. Hope you have some luck with it.
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texas: Great minds think alike? I do have some gray celtic sea salt (that I can't live without on popcorn!) - I made a sterile saline solution and did a nasal irrigation. It actually felt good - it helped my dry sinus passages quite a bit and stopped the running, which I think is partially related to the fact that they are so very dry!
IowaSue - exactly! It's like either burning dry or dripping like crazy! I'm starting to feel the dryness in my throat too. UGH. I better keep the salt solution handy. I think any of those over the counter saline drops for babies (or adults) might help too.
I think also now that it's october, the air is very dry here in the northeast after a very hot and humid summer. Maybe that could be part of it. I googled Taxol and sinuses and apparently I'm in good company!
I went for a walk tonight and ended up running a little bit. Not a lot, but I did my "hill" three times - I was careful not to overdo it ,but it made me feel good just to be out there for 20 minutes or so walking and running and sweating a bit.
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Good morning Chemosabes. Hope everyone had a good weekend. My dh came home for a day and a half from Indy, so I got to see him a little bit. Yay! Made my weekend a lot easier. My best friend had a seizure on Friday (probably from a medication she's on), so it's been busy. At the hospital with her all day Friday (I actually beat the ambulance there), keeping in touch with her family members, and since she can't drive, taking her places. She's doing ok, though.
I have a question for the group that's really important for me. As you know, I've been trying to decide between 4 and 6 tx's of TC, and my onc isn't being very helpful. She gets irritated when I ask to talk to her about it. Last week, when I brought up the issue, she pretty much said, "I thought we'd already been through this." She says that because TC x 6 isn't on the NCCN Practice Guidelines, she won't give TC times six, that it is a rule in her practice, but two of her nurses have told me that sometimes they do give TC x 6. And when this first came up, before I started chemo, my onc had said that six Tx's would be a good solution for me, but that she was still recommending 4 tx's. So my questions are: have any of you been given a choice between 4 and 6 tx's of TC (not TCH)? and have you had any trouble getting insurance to pay for six tx's? My onc told me that because TC x 6 isn't on NCCN Guidelines, she doubted if my insurance would cover it, but I don't see how that can be true since so many women get six tx's. My onc has a bit of an ego, and doesn't really like to be questioned, and I'm wondering if she's being totally straight with me. She gets irritated if I bring it up, and last week pretty uch told me, "I thought we'd been over this already." For instance, if her nurses are right and she does give TC x 6 in some cases, why lie about it? Or hide it from me? Why not tell me that, yes in some cases they do use tc x 6, but explain to me why she doesn't think it would be appropriate in my case (even though in the beginning she said she did think it was appropriate)? And why tell me insurance probably wouldn't pay for it, when other onc's prescribe it for their patients, and I haven't heard of those patients having insurance problems with it.
Anyway, I just am not comfortable with the responses I've gotten from my onc about this, and while my tumor wasn't that big, my pathology report contained some pretty ominous prognostic features (that everyone has agreed on), so I want to do whatever makes me feel the most comfortable with the treatment I get, so that down the road if I have a recurrence, I won't look back and wonder if it could have been avoided if I'd had those two extra Tx's. And I don't want this doubt hanging over my head. I know at some point we have to trust our doctors, but that's hard to do when your doc tells you she thinks this at one point, and then denies it later, and when she tells you one thing and her nurses tell you another.
So if any of you have been given the choice, could you please tell me about that? And those of you getting TC x 6, how did that get decided, and have you had any insurance issues around it?
I would really appreciate hearing about your experiences and any advice as soon as possible since, if I'm going to do anything about this, it will have to be soon. Thank you, dear friends.
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Hi wherria - could it be that the nurses are thinking of metastatic patients so they would get more cycles?0
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wher-- I can't remember, but didn't you have another doctor's opinion too, initially? If so, can you call that doctor? I think maybe you could ask the nurses why she would say that about the six treatments. I think your doctor owes it to you to pull out the statistics and explain exactly why you are getting the treatments that you are. At this point, it seems impractical to switch doctors so you are probably stuck trying to pull the info from the one you have.
It makes me mad that an oncologlist would be "impatient". For goodness sake, they are dealing with dying people (NOT YOU!) but every day they deal with terminally ill patients - how can one possibly be frustrated and impatient. UGH!
Anyway, today I'm off for my weekly bloodwork. Tired of "living" the cancer center. UGH! going to have them take it from my hand. I hate it when they access the port!
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wherria, I'm on a different regimen so I can't help you there. Is it possible for you to get a second opinion? If not insist on a consult with this one, bring dh or someone to advocate for you, and point out the discrepancies in what she has told you and ask her to clear them up. You just need to think in terms of what is best for you and not let her attitude get to you. She's probably being brupt so you'll back down, but if at one point she offered you a different treament regimen or the staff are giving conflicting info then she needs to clarify.
Carolyn
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wherria It is good to hear from you, I was thinking about you this weekend because I thought I remembered that your DH was away. I'm glad to hear that he was able to come home for a visit. Also glad to hear that your friend is doing ok! About the treatment regimen, I agree with others who have said to get a second opinion. I was never offered just TC because I am HER2+ but it sounds like she has never fully explained to you why she ultimately settled on 4 instead of 6 treatments other than just the "practice guidelines" argument. I understand that the practice guidelines are there for a reason but ultimately each person's individual circumstances should be considered in making the final treatment decisions. I also don't like the way she brushed you off when you tried to ask for clarification. So if I were you I would definitely go get a second opinion somewhere else. If you call another onc's office and explain your situation I would certainly hope that they would try to squeeze you in for an appointment sometime this week or next. You are absolutely right to be asking these questions and like you said, if you end up with a recurrence down the road you don't want to be looking back at this and wondering "what if I had really pushed for two more treatments?". Four treatments may be the right choice but from what you have said it sounds like your onc has not given you enough information to make you feel comfortable with that so I would say don't quit asking these questions (either ask her again or get a second opinion) until you really feel comfortable with 4 or are able to get 6. Remember you are your own best advocate!0
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Wherria, I am on TCx4 and more than 4 was never discussed. I am stage 1 grade 1 although based on oncotype (21) onco said more likel grade 2. THere is a thread of "anyone just on Taxotere and Cytoxan". You might post there and see what that group has.
Second opinions are always good. Taking someone with you to your own onco is also a good idea. My DH definitely hears and interprets things differently than I do.
As for your insurance doctors get approval for based on their own medical procedures all the time. My insurance declined a PET scan and the onco had it approved within 48 hours its was approved.
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wherria,
I just did some research on the "just T&C" thread, and found an interesting post. Of course I pass this along knowing that it isn't "science" but someone said that her onc had said that the data about 4 vs 6 treatments is still out. Her onc had recommended 6 cycles because she had a high oncotype score and grade but said that the studies are still underway. To me that sounds like there is a regular regimen of 4, but that some docs use 6 based on their clinical judgement that it might be helpful.
Elizabeth
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Wherria- i also am on a diffrent tx but this is my opinion- if you dont feel that your dr is taking your questions/concerns seriously, maybe you might have better luck with another dr. I mean its not like we're fighting the common cold here- this is CANCER. At the end of the day WE the patients want to know that we did everything possible to get the best care. There are too many stories of early staged bc popping back up and the person thinking "what if i did this or that..."
We HAVE to have confidance in our oncologists- no way around that!
I am so pooped right now!!! due to the fact we only have 1 car i HAD to pick up daughter via foot (2.8 miles round trip) well my other option was drop DH off at work and wake everyone up to go pick him up at 2 am! Well i wanted to walk until it was the last strech home! my legs are burning, my lungs are fighting lol- DOESNT IT FEEL AWESOME TO FEEL ALIVE!!! luckily its only mondays and tuesdays that i have to do this- the rest of the week will be my choice
Gonna carve some pumpkins tonight- well one family pumpkin as soon as the kiddos wake up! they crashed on the walk! (lucky them!)
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Texas - can't someone pick up your kids? Yikes - that's a long walk on chemo!
I went for my bloodwork today - my sinuses are all plugged and since I still have a tiny wheeze, I'm now on z-pak. Hoping it wipes this out. DH is still coughing - he goes to the doctor tomorrow. He also seems to have pink eye (probably the same bacteria!)
Anyway, I have this little round spot near my port that never healed. I don't know what it is- the doctor who did the surgery painted over my wounds to seal and them and it was painted over for a while and then it scabbed. It's been scabbed FOREVER. No signs of infection but finally after like a month, the scab fell off. Problem is when it did, it bled forever - clear stuff and blood. Then it scabbed again after a few hours. This has been repeated since Saturday - every time I take a shower it falls off and then bleeds and then seals again.
I had my oncologlist look at it today and she said it's fine - it's just taking a long time to heal (I imagine because of the chemo from what I'm reading) But the rest of the wound healed fine. I don't know what to do. I'm sure it's not infected --no redness or inflammation around it but it just refuses to heal.
My WBC count has been fantastic and my other bloodwork - platelets, etc, have been totally normal.
I'm thinking of seeing a dermatologist. It's really annoying how long it bleeds after each shower - I want it resolved! All other wounds I've gotten - cuts or scrapes have healed in totally normal time........
SHEESH if it's not one thing it's another with BC!
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Cal - one side of my port scar took about 6 weeks to heal. The onc nurse told me there was a stitch that didn't 'absorb' and that was the problem. It never bled though. Hope you get it figured out!
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Good evening chemosabes-
Wherria: I am on 6 TAC. I don't think TAC is given in a series of 4 or b/c of my stage, 6 was warranted. Adey and I have almost the exact same dx and we are both on 6 TAC. I don't know if TC is generally given in 4 txs. I hate to remind you there is a LOT OF MONEY in chemo and if you are not getting satisfaction with her, and you want another 2 txs, there is nothing precluding you from going to another hospital/onc and getting them. I am currently seriously considering leaving Yale because of parking problems. Just this past week I was "detained" in the garage b/c I lost my parking pass, had been in the hospital for 20 minutes and the garage was trying to charge me the "lost parking pass" fee of $18. I had a lot of money on me as I had just been to the bank but there was NO WAY I was paying $18 for 20 minutes. Finally they let me go at the 20 minute rate of $2. I have 2 cars and one was hit-and-run in that garage, I was told I did not look oncologic enough to be parking there, was referred to as "the blonde" by some jokers talking to each other on hand-held radios, as told by valet I could not use that service b/c it is only for cancer patients and when I tried to plead my case I was told I looked too young for their service etc.... I am seriously considering taking my remaining txs at another hospital where there is no parking drama. Yale disassociates themselves from the drama by citing they don't run the garages but the city does. Well they are the ones that are making $350,000 off of my disease so they better come up with a solution. In long, you have power as a patient because they want your money. Use it.
LGFB: I finally went today!!!!!!! Yeah!!!!!!! More on the parking issue, during last week's fiasco one of the booth people swore at me and today, again, she called me an "effing b!" More abuse in teh parking garage. In any case, LGFB was very nice and fun. I got a nice bag of cosmetics and met some nice people and it was fun and informative. I very much enjoyed it and they gave me a wig, which I will return if I don't like it, that is short but certainly less attention-getting than the one I have. I am going to try it out for a few days. What a great program though. I really enjoyed it.
My employer: as you all know, I have been given a hard time by this HUGE company. In a few weeks, I will reveal the name of the company that has been giving this bc patient a terrible time so you all know where and how to spend your money. This HUMONGOUS employer has basically been threatening to fire me and been very inflexible almost since the day I was dxd. I have been to an attorney twice and am going again soon. In any case, what really drove home the caliber of awful organization they are is when today I was speaking with one of the American Cancer Society reps and she asked me what I do for a living etc.. When I told her who I work for she said "say no more, their reputation totally proceeds them. Did they try to fire you yet?" She went on to tell me a few things about awful stories from other cancer patients that were also employed by them. She said they have a very bad reputation. Nice, really nice. I was a little embarrassed and unnerved to hear this. Furthermore I made a mental note to get back to the attorney!
Texas: take a rest!!!!!!! Walk-0-rama!!!!!!! I think if you put a pink ribbon on it could have been a mini ACS march!!!! I give you so much credit.
I hope you all have a lovely, lovely evening-
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Wherria: First off, I too think that if you are uncomfortable you should get a second opinion.
As for the TC X 4 versus the TC X 6. I received TC X 4. I questioned my onco as to why some people get TC X 6 and I was not. He said that the studies have not yet proven that TC X 6 is any more effective than TC X 4, and there are several serious side effects of Taxotere, such as neuropathy, that do not begin to appear until around 3-4 doses. Therefore, he said it is a risk/benefit analysis that leads to the current recommendation of TC X 4 with there being no significant proven benefit to the 6 doses in cases such as mine but that the extra doses do open you up to some more serious side effects. He said that the decision was based on type of cancer (I have ILC, which is harder to detect but less aggressive than IDC) and grade (mine was grade 2, which is moderately aggressive..grade 3 is very aggressive). I also had a second opinion from a breast cancer specialist at CCOA in Philadelphia whom my old boss knew. He agreed with the TC X 4 given my pathology report, but also said that I could find a doctor to give me 6 if I really wanted it. He just didn't think it was necessary. He also warned me that throughout this whole thing I had to remember that chemo drugs are very powerful drugs, that do in the end damage your body, and I had to resist the urge to "overtreat" myself unnecessarily.
I am now facing the same problem with radiation. My surgeon only removed 2 nodes, both of which were positive. Nobody knows if any more were positive because the surgeon stopped at 2 for no reason other than to reduce the risk of lymphedema. The problem now is whether or not to radiate the axilla as part of my treatment plan. Apparently if I had 3-4 positive nodes, the they would radiate the axilla directly. The radiation oncologist does not recommend radiating the axilla, but said she will do it if I want her to. The problem is, not only will I increase the level of the radiation I am exposed to, but also I will further increase my risk for lymphedema significantly. So, I keep reminding myself not to "overtreat" out of panic and possibly cause myself more harm than good, but I want to make sure to do everything that is necessary to kill all the cancer. I am still not sure what I want to do, but I have a couple of more days to decide.
Anyway, good luck with your decision Wherria. Remember this is only what was told to me by the oncologists that I spoke with and every case is different. I strongly recommend that you get a second opinion so that you can be comfortable that you have done everything you needed to do.
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Lizzy- that is horrible but not surprising. When my son was in the hospital when he was five, my husband worked for Kraft - no,I'm not afraid to reveal the name! He had to take time off - we had to tag team sleeping there, for 8 days. They weren't happy about it. He didn't take a ton of time, but guess who got mysteriously "laid off" three weeks later?
I don't understand corporations. Why is everything so short sited? For goodness sake - clearly my son wasn't in the hospital forever and you won't have BC forever. It's RIDICULOUS and if they do fire you, I'd go straight to the media and document everything! BC is front and center right now, it's EVERYWHERE because of BC awareness month. You'd have a good case! I can't beleive the bad publicity would be worth it for them, but if they're going to mess with you, I'd say IT'S ON!
stp - why oh why can things not be easy. Have you spoken directly to a radiologist? It might increase the risk of LE but you did only have two nodes removed and that right there would decrease your risk for LE....and some women have radiation and no LE. I had 2 of 12 nodes and rads were not recommended for me...however, I was told if it was 3, then it would be. I think if it were me, with 2 of 2, I'd do it.....but that's just me and it doesn't mean it would be the right decision.
Bleeding stopped, now it's scabbed. I'm annoyed. I think I'm going to try to keep it dry over the next few days and see what happens(should be fun but not difficult since I haven't much "hair" to wash so I can just take baths.
I"m going to see a dermatologist if it doesn't clear up. I wonder if they can just singe it shut or something. It's not deep - it looks like if you had a mole removed - just a round area that won't heal. UGH! Speaking of hair -- I've been through four AC's and one Taxol and I still have hair. I would say about 95 percent has fallen out but I still look an old man with a crew cut - it's pretty even all over, but just really fine, about 3/4 inches long. I still have eyebrows but my lashes are much shorter/thinner. Wondering if Taxol will take the rest out.........
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oh - and i have kind of a funny story speaking of hair. I stopped at a gas station and the very nice man who owns it is from the Middle East. He always wear a turban and today I had a scarf that I double wrapped around my head and put on a hot pink sweatshirt, skirt and leggings. I felt like looking cool today. So I went to the gas station and he started talking to me - I couldn't understand anything he was saying, but I think he was asking me about my turban - I just kept nodding and smiling and saying yes and he was pointing to his turban, etc., and we were having this conversation/non conversation with him asking questions and I just kept nodding and saying "yeah!" and smiling. I think, but I'm not sure, that I may have accidentally told him that I'm Muslim!
He seemed to be having such a good time that I didn't want to ruin the moment by saying I had no hair and cancer! So he's chatting on and laughing and I'm just nodding politely and finally I said goodbye and left. It was like total sitcom comedy! 0 -
Hi gang! I hope everyone is having a good day today! It is my birthday today, I am 33. Fortunately today is one of my good days between treatment. I'm going out to lunch with a couple of friends and then after work I'll have a nice quiet evening at home while DH is at lacrosse practice (he is asst coach for the club team here). Unfortunately there are some stressful things today too. My darling cat, Janie, has some kind of growth/infection in her mouth that did not respond to a course of antibiotics. So she is at the vet today getting a biopsy and the results won't be available until next week. I am hoping that she does not have cancer too! I don't know if you gals remember but she had to have one of her front legs amputated in July due to a blood clot so it just seems like her health is on the decline all of a sudden. She is 13 years old but has always been in good health up until these last few months. The other stressor is that my husband's grandfather passed away last night. He had been sick for a while and for the last few weeks we have known that he would likely pass any day but still it is sad. My husband's family all lives in Baltimore and we are here in Florida so this will mean travel to the funeral. My husband and I talked it over a few weeks ago and decided that I would not go to the funeral, we were worried about the timing with my chemo and especially the risk of me getting a cold or flu. We would have to fly up there and back and of course there would be lots of people around at the visitation and funeral so it seems like me not going is probably safest. I just feel bad that DH will be going by himself. My next AC is not until next Friday so the timing works out that I could go but I think it is probably better not to. I feel bad about it but of course his family understands. So all of that is what is on my mind today!
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Happy Birthday Jsw!0
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Happy Birthday, Jsw! I'm so sorry to hear you have so many pressing issues to deal with. Please don't feel badly about not going to your father-in-law's funeral. I am sure the whole family understands. Take care of yourself and try to find some joy today. I hope your cat will be ok!
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Happy Birthday JSW.
The last place I want to be is on an airplane with a couple hundred people, recycled air and viruses floating around. Staying home makes sense.and I am sure your husbands family will understand. .Have a good day today.
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Flying - if anyone does have to fly I just read that the front of the plane has the cleanest air and that they usually circulate in a lot of outside air during the flights. The article mentioned that it is important to disinfect the surfaces around your seat, like the seat back button, armrests and tray tables.0
