Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy
Comments
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tlg-we have the same staples....I had Fage greek yogurt with honey and Ezekiel 7 whole grain toast. One of the only things that tased good, also with the canned Wolfgang Puck organic free range chicken soup with egg noodles. Almost like homemade. Cold stuff tasted better than hot.
AA-Both my onc and my primary physician put a lot of weight on the Absolute Neutrophils also. Said they look at that as the most important thing. -
Something to remember is that the nadir for white count is 7-10 days from chemo - Blair's wife is not at that point yet. Also, Neulasta does not work for all patients, some have to be on prophy antibiotics throughout chemo. Fever can come from generalized soft tissue inflammation SE from chemo. I ran a slight fever (never broke the magic 100.5 mark) after each TCH tx. Dehydration can also drive a low-frade fever up, she should be sure to be hydrating adequately - I remember Blair saying it would be difficult to get his wife to drink enough.
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It is now Christmas 12/25 at 8:30 PM. Christmas Eve 12/24 at 8 PM my wife after feeling sick all day had a 101.5 to 102 fever. Oncologists said to take my wife to the emergency room which I did. We were at the Christmas Eve gathering of my in-laws and I had to leave my kids behind. The ER staff has a lot of experience with fevers of patients receiving chemotherapy. So my wife had to have a chest x-ray, blood cultures, blood tests (blood counts) and urinanalysis. As you all know, in an ER you have to wait a lot, even on Christmas Eve. So time dragged on. I took advantage of being there and the delays to have my foot which had been bothering me for a few days looked at and it turned out I had an infection. I was still able to keep tabs on my wife for the hour my foot was being looked at. So at about 1 AM we were told that my wife had a low white blood cell count - 2.5 where the low limit of normal is 3. Her neutrophil count was at borderline normal. She also had diarrhea. Her fever dropped a little bit from 102 to 100. The oncologist ordered her admitted to the hospital in a special oncology isolation unit. But we had to wait from 1 AM to 3 AM to get the available room. During this time period they put her on IV antibiotics Fortaz (ceflazidime). They brought her up and she was brought to a room where she will be by herself. At about 3:30 AM the nurse completed the IV and other things. I left to go to a 24-hour pharmacy to get myself my own antibiotic for my foot (Clindamycin) and did not get home until after 5 AM. When I got home somebody had broken the bathtub faucet handle and the water could not be turned off. I thought my kids had done it but it turned out to have been my mother-in-law. I had to put in an emergency call to a plumber who could only come at 8 AM or 9 AM. I got 2 hours of sleep. The plumber came and was able to turn off the bathtub faucet. And it will cost a small fortune to get it fixed since plumbers especially in an emergency situation get paid a lot. After that was under control, I at least got my kids to start opening some of their presents. Then I went to get my antibiotic and on the way for a Christmas day the Dunkin Donuts was surprisingly packed. I then went back to the hospital. The oncologists senior partner who was on call checked in on my wife. Her fever is down under 100 and she is continuing to get IV antibiotics. Her appetite is OK but she began to say her stomach was so-so. Lucky for us that the hospital is only 15 minutes away driving. I had to wear a mask when I went into my wife's room and she is by herself. She rested and watched television. I went back home to the kids and given the small amount of sleep I had gotten I took a 3-4 hour nap. Then at 6 PM went back to the hospital. My wife's white blood cell count has fallen even further from 2.5 to 1.4. She is in good spirits and watching TV. Again I had to wear a mask. She has to observe a so-called neutropenic diet which includes no raw fruits and no raw vegetables. So given the drop again in the WBC it is not clear how long my wife will be in the hospital. I checked the breastcancer.org section under chemotherapy side-effects but I did not see anything on low white blood cell counts or neutropenia. So we had from Tuesday to Saturday morning or 3.5 days which were uneventful following the first chemo treatment before this happened. The ER and oncologist said that low white blood cell counts and fevers happen with about 25 percent of the patients so it seems to be a common side effect. I will update tomorrow.
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Blair - So sorry this happened to you both on Christmas - when it rains it pours, right? Hopefully your wife will be home soon. I hope your children were able to have fun regardless, but not so much for you! Remember to take care of yourself too, glad you were able to get your foot taken care of in the ER. Sounds like she may be someone for whom Neulasta does not work. For her remaining tx they may put her on antibiotics preventively. Try to get some rest.
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Oh Blair - that is terrbile. I've never heard of anyone reacting like that except for LadyGrey. My husband had a raging fever after being given Oxaliplatin - he subsequently had to be admitted for every treatment and given heavy duty antihistamines. Did you wife have carboplatin? or the other C drug? It's amazing her white count has dropped so quickly.
Give her lots of hugs from us if you can.
Sue
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Blairk,
Sounds like both of you have had quite a time of it, especially for the first chemo. Most don't end up in isolation but as I mentioned in my last post, it does happen. Other people often post thinking their experience was typical with lots of comments about getting thru it with no problems and not having as many side effects once treatment is done, but the older one is at time of treatment, the less quickly the body can keep up with the challenges that chemo presents. At the same time, in general the younger one is, the higher the risk for recurrence and the more likely it is that one will be HR negative.
Hope it all passes into history soon and you both are home and can get some rest. Christmas is not the ideal time for treatment, but at least the first one is done.
A.A.
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Dear susieq58 - My wife is receiving Taxotere Cytoxan Herceptin. The primary oncologist is supposed to come early this morning. I will go to the hospital later after the bathtub is fixed.
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That's good she didn't have carboplatin - my husband said that our onc said that the platinum drugs are unpredictable. Still very strange to get such a low blood count so soon after treatment - I wonder if they gave her too big a dose - a question you could ask. Also, did they do a blood test before the treatment? This was always done for me. If your bloods were ok, then treatment would progress.
(((((((((((((((HUGS)))))))))))) Sorry your Chirstmas hasn't been a happier one.
I'm off on holiday tomorrow - will catch up when I get back in a week - hope to hear she's much better by then.
Sue -
It is now Wednesday December 28th. On Monday 12/26 my wife's white blood cell count went up to 3.4 and neutrophils were at 1750. I made two visits to my wife. She also had her fever go back up to 101.5 and then it went down again. On Tuesday 12/27 my wife's white blood cell count was high enough for her to go home. So from Saturday 12/24 in the evening to Tuesday 12/27 at midday in the hospital. I did not get the exact number from the nurse on my wife's white blood cell count at discharge. So since yesterday my wife has been resting at home. The oncologist thinks the dose of taxotere and the dose of cytoxan were too high so he plans to reduce the dose for the second chemo treatment on January 10th - maybe by 25 percent. The only other side effect symptoms my wife has are diarrhea and fatigue. More later.
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Susieq58 - My wife had blood count day of chemo before starting the chemo. Hope you enjoy your holiday.
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Blair, glad to hear she is home. After my diasterous first treatment my oncologist said she might need to reduce the carboplatin as that is the one most associated with nausea. I did ok after the second - third yesterday and threw up all night. I think that may have been the result of seriously out of control heart burn - got a prescription for a Pepcid like drug yesterday but was 5 minutes too late to pick it up.
I have a nausea patch which you might check into next time - it worked great on #2 - jury is out on #3. The nice thing about it is that there is no medicine to forget.
I've given up on the fatigue and am resigned to feeling dreadful until February 1 - 2 weeks after the last treatment. Life is something I do between naps. I managed to gain 5 pounds in two weeks without eating much of anything. The fun never stops!!!
Keep us posted on how she's doing - I know I'm not alone in worrying about her! -
So glad she is home. Since they are going to reduce her dosage next time, let's hope this was a one-time thing!
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BlairK and LadyGrey I think of you both often and keep hoping that the SEs will diminish. Reducing the dose should certainly help you both.
BlairK I'm so glad that your wife is back home and I'm sorry it's been such a rough start and during the holidays. Your wife should start to feel better during week 2 and will feel dramatically better during week 3. Try to keep her well hydrated, especially if she's having diarrhea-getting enough fluid during chemo is a real challenge but all the SEs are only compounded by dehydration.
LadyGrey I gained 12 pounds during 6 rounds of TCH in spite of severe GI problems and not eating much-turns out it was a combination of steroids and the Tax which gradually caused a lot of fluid retention (it was so gradual I couldn't tell until the end). I doubt that you are actually gaining weight. I started getting abdominal and ankle swelling in the final cycles. The good news is that the fluid weight dropped off quickly about 6 weeks after chemo (might be quicker for you since you are having fewer cycles).
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iPad saved my sanity through chemo, radiation, and all the waiting in doctor's offices. I even take it into the exam room with me so when I wait I have a book or email to read. I guess I can't say it saved my life, the meds did that, but I would have gone bonkers without my ipad.
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Grammy-ditto on the ipad. I love mine. I asked for a keyboard for christmas and that makes it even more fabulous. Much easier to type!
Blair and TLG-this board is the first one I check when I log on to see how you are doing. I think about you often and am glad things are a little more reasonable.
TLG-i have 4 more herceptins to go, maybe 5. Yesterday was an infusion day and last night I wasreally queasy. Took a zofran, which helped, but then woke up nauseated in the middle of the night. That was a first. Not sure if it is because I have a cold and ave been coughing and taking cold medication, or some weird herceptin thing. Its always something new. -
@Blairk, I also was just diagnosed with invasive DCIS with 1/3 node positive 1.4mm. Chemo and Herceptin advised. I am doing neither after much research, the outcome with or without treament just isn't enough to justify the aggression. This is a very personal decision but I am choosng to do traditional and alternative. I did however have a bilateral mx on 12/6/11. If you want to read some of the research I found pm me. I hope your wife feels better soon!!!
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Blair, After my first chemo treatment I saw an physician assistant and she told me the first treatment is usually the worse. For me that proved to be true. I'm praying that the next treatment will be an easy one for your wife.
Blessings,
Debbie
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Hang in there Blair!! I also heard that the first is the worst (it was for me in some ways since it was all so new), could be the dose of chemo depleted the bone marrow before the neulast had time to expand it. Next time hopefully the bone marrow will be able to respond quicker since it is already expanded. Happy New Year to you and your family!
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My first chemo was the worst also. Seemed to get a little easier each time.
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It is now Friday evening December 30th. My wife continues to have fever. Yesterday we went in to see the oncologist. Her total white blood cell count was 27.5. Now that I got that reading the nurse on Tuesday at discharge said it was 22. This was from a low of 1.4 on Sunday. My wife also has had ongoing diarrhea but I would not characterize it as severe. The oncologist thinks it may be "clostridium difficile" or "C diff" which happens after large doses of antibiotics. This is the growth of another bacteria after antibiotics wipe out the normal primary bacteria in the intestines. The oncologist prescribed "metronidazole" which she started taking after we got home yesterday - 4 times a day. It seems like a plausible diagnosis of a side effect but I am troubled by the ongoing fever. I am wondering how quickly the medicine will work. I should also mention that my wife has one or two mouth "ulcers" and also mentioned dry mouth. We have another appointment with the oncologist on Tuesday. I hope my wife's fever will stabilize. More later.
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BlairK - If it makes you feel any better I had diarrhea for 10 of the 21 days between tx's, starting almost immediately for every tx. I know others on the TCH thread did as well. Nature of the beast. I would also run a low grade fever, but it never did rise above the danger point, and my WBC were always good except for after tx#5. I did get mouth ulcers, rather severely, but only after tx#1. C-diff is nothing to play with, did they culture a stool sample? Not to alarm you, but it can be quite tenacious and recur in cycles. She may need to see a gastroenterologist to treat it properly if it is really C-diff.
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It is now Monday January 2nd in the evening. My wife has not gotten better yet. She still has a fever so it is now about 10 days that she has had the fever. The fever responds to Tylenol but once the Tylenol wears off the fever comes back. It has gotten as high as 102. She still has diarrhea but she does not characterize it as severe. Saturday she began complaining of a metallic taste in her mouth. And again she has I think one mouth ulcer/sore which she says feels better when she uses Listerine. She has lost about 7 pounds. We have an appointment tomorrow Tuesday in the morning with the oncologist. The metronidazole appears to be ineffective. Have any of you experienced a fever for such a long time? My wife stays in bed and appears to be losing her strength. I hope they can get to the bottom of things tomorrow.
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Yes, the fever is something to take seriously. The mouth sores and the metallic taste and some diarrhea are normal, but the fever must be dealt with.
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Blair - I agree with two putter and am glad you are seeing the onc tomorrow. I am wondering if she needs fluids as well. Perhaps they can give her an infusion, it might help.
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Blair - I'm back from my holiday - sorry to hear your wife is not on the mend yet. I didn't get much diarrhea at all - a bit for a day or so a week or so after the treatment. Good to hear they will reduce the dose but that doesn't explain such a long time with a fever.
((((((HUGS TO YOU BOTH))))))
Sue
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Blair: I only had a few mouth sores but what realy helped ( and was very soothing) was Biotene's Oral Balance Gel. The metalic taste will be with her for the duration of the treatments Mine finally disappeared about 3 weeks after my last treatment. I found sucking on lemon drops ( a hard candy) helped my dry mouth and the metallic taste. Ginger ale also tasted good. My prayers are with you and your wife.
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Blair - How is your wife doing today?
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Blair,
Hope your wife is doing better. She had her 1st chemo day before I did. I also had the diarrhea, mouth ulcers, dry mouth, as well as loss of taste. I have not had the fever. So sorry she has had such an awful time of it. I started to feel more normal about day 10 after tx. I hope she is able to go through the rest of her treatments without any difficulties. Please keep us posted.
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Blair, I found it utterly terrifying to have my chemo experience SO at odds with what I was told to expect- some "what else haven't you told me?" and some "what is WRONG with me that I am struggling so?"
So I've gotten a lot quieter here - my side effects are what they are. Feeling badly about having them doesn't solve anything. I still have them - I have fever every time for about a week. It took me exactly one time of a nurse talking down to me before it never got mentioned again.
I suspect you wife's fever is a much more serious matter. My only point is that we get a picture of what "this" is going to look like, "this" being something we hadn't considered as a possibility 90 days ago, and when even the "surprise!" outcome doesn't happen, the double twisted whammy comes into play. -
It is now Wednesday January 4th in the morning. Monday evening, my wife's fever got up to 103. Yesterday morning I drove her to the oncologist. They did another CBC and related blood tests. My wife's total white blood cell count was about 25. It also showed an elevation of the platelet count. The fact that my wife has had only mild or sporadic diarrhea points away from "C diff". Also the metronidazole or Falgyl has not been effective so the oncologist had my wife stop that. The oncologist prescribed Naproxen which is a stronger variant of Alleve only available by prescription. He also had us go to an infectious disease specialist so I drove my wife over to that doctor. The ID specialist did another blood culture. Both the oncologist and ID specialist believe if the Naproxen returns my wife's temperature to normal for an extended period then that means the fever is related to Taxotere. The oncologist mentioned something known as "Taxotere fever". If the fever comes back or breaks through the Naproxen then that means it is an infection of some sort and my wife will have to be hospitalized again. After the visit to the ID specialist, the oncologist sent my wife back to the hospital to have a full body scan again. We got home at about 6 PM. My wife has also lost about 7 pounds from about 125 pre-chemo. My wife's appetite was better and she drank a milkshake which made her stomach feel better. She took her first dose of Naproxen. This morning, her temperature was down from 102 to 98.1, If this temperature is sustained then it means that the Taxotere has been causing the fever. My wife has another visit with the Oncologist tomorrow Thursday. More later.
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