Cytoxan Taxotere Chemo Ladies- February/March 2013
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regbeach- you may think about making some photocards that have symbols for physical sensations that perhaps your mom can understand and use to point to. She may be able to communicate by pointing to the a particular picture of a gesture, activity without speaking. You may want to talk to an occupational therapist to see if such picture cards already exist. Just an idea.... As for the loss of hair, the American Cancer Society has the Look Good, Feel Good program where one can obtain a free wig. You may also want to seek out some info for caregivers that you can find on BCO.org main website and discussion forums ( I know there is a thread for Caregivers) and through the American Cancer Society or at the hospital where your mom is being treated. Wishing you the best. Sending many hugs and lots of positive healing and calming prayers, thoughts and energy.
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OK, still pondering the 4 vs 6 treatments, since I don't think my DX is a slam dunk for 6 anyway, one thing I'm concerned about is delaying rads for too long after my lumpectomy. Some of the research I've read indicates that the longer you delay rads the more likely you are to have local recurrence. Even with 4 treatments, I would start rads 4 months after my lumpectomy. Six treatments would stretch it out to 5 & 1/2 months. Wondering if anyone else who had lumpectomy has heard much about the timing aspect of radiation.
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You would start rads within 3-4 weeks after completing chemo. That gives your body a chance to recover and also for you to get your rads tatoos /markings and a simulation.
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Melrose,
I will ask my mom's speech therapist about cards for physical sensations. Her last speech therapist skipped the words- hot, cold, and tired when we suggested them for communication board pictures and practice. So, I am not optimistic that non-concrete cards exist. I have successfully communicated dizzy and nauseous to her when dealing with another medicine so I think she understands that now. I can't think of a way to gesture numb or tingling. Pins and needles is so idiomatic (?) it's probably more confusing. Today, I think her leg fell asleep and she said it was numb. I hope it is because she was sitting way too much today (we didn't get out of the house today) and that she doesn't have some kind of issue that chemo would exacerbate.
If you have an idea for communicating numb or tingling- let me know.
Thanks.
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@ Melrose.....
I have been going to a lymphedema PT therapist from the beginning twice a week and she is awesome. My doctor referred me and thank GOD my insurance pays for all of it. She said I am at Stage 1, which is still reversible. She has me doing exercises, daily massages in a very specific order, an wearing the sleeve and gaunlet regularly. Since she said as of NOW its still reversible, i am very motivated to follow all the recommendations/insrtruction. This part is the hardest for me of everything. Im dreading going back to my gym where we have a VERY close nit group in spin and weigh class with a bandana and an arm/hand sleeve....
I need to grow up, suck it up, and just go..... I will feel better.
xoxo You guys are awesome.
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Did anyone get a whole-body rash about 10 days after infusion? This is my second round. Not sure if the rash is due to chemo or seasonal allergies or something???
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I got a rash all over my neck the 8th day after my first infusion. I had an existing onc appointment that day and he told me it was too late to be a chemotherapy side effect at that point. Did you add any new supplements or foods?
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Goldie, I am triple negative, and am having four treatments. It may have to do with lymph node involvement, MX vs. Lx, stage and grade. I start next Wednesday. I had a different cocktail 16 years ago, I do not know how I will react to this one, but I am hoping for the best. I am so glad to have found this dialogue.
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I start my chemo next Wednesday, and the Dr. never mentioned a shot for the white blood cells.
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Jerripi14 -some docs give the neulasta as a matter of course (mine did) and some wait and see if your body needs it. Its expensive - so it may have to do with insurance. I had my last treatment last week and have had no fevers or illnesses, so it 's worked for me.
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I had Nuelasta after my first infusion and ended up with a kidney infection and 101.7 about 6 days after, Felt better after the second day of Levaquin. Everyone is so different. I go for second round May 15. I hope it will be easier bc I shouldn't have the kidney infection to deal with. I lost my hair on day 13 post 1st infusion..I had shaved it 2 days prior so the nubs just started falling out. Weird. I also was "released" from my job on day 12. Something about not being a good fit becasue of missing time from being ill from chemo..WTF? WHO does that to s person with cancer?? Needless to say I am down in the dumps and going into #2 is not a good thing.
I got a sleeve and gauntlet for my trip on May 25th. Look forward to that. Will be very careful with germs etc on the plane.I travel on day 10 so if it's like last round I should feel fine enough.
Happy Mother's day to all you Moms...
runnermom1956
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What??????????????????????????????How could any human being let you go because you are not a good fit because you are on chemo???????? This is temporary!!!!!! That justs disgusts me, but know that somehow someway, it will work out to your advantage!! It has to. Keep your spirits up and continue the good fight.
Happy Mothers Day everyone!!
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I try and try to make sense of it. But it only stresses me out. One word: KARMA
Love u all my SIstas!
RM
ps I was trying to post a pic for my avatar but it won't allow me to..any suggestions???
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Today my head itched and when I scratched my scalp a ton of hair came out. I checked in several places and yup, handfuls were coming out. I decided to just shave it all off because I didn't want hair all over the place. Another milestone met.
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Bummer Goldie, I remember that part well and it really brought me down. I am now 3 weeks post final TC and mine is coming back. I guess the only encouragement I can offer you is that your hair will return! Hang in there.
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Wishing everyone an easy time this week with chemo and hoping for minimal side effects for all.
As for Neulasta shot, not everyone receives the Neulasta shot ( or Neupogen shots) after a round of chemo. Some oncos prefer to wait until a patient demonstrates a need for the shot. I know there is a lot of discussion about the possible bone pain after receiving the shot and just reading about that possible side effect can make one not want to receive the shot. However, this bone marrow boosting drug can prevent one from making a trip to the ER and possibly a stay in the hospital so that is the silver lining here. I always asked for the shot to be given in my tummy because of my tummy fat. ( The one time it was a good thing to have). The shot was administered slowly which helped prevent any injection site pain.
FOR THOSE GETTING A NEULASTA SHOT AFTER YOUR ROUND OF CHEMO:
You may want to try taking regular 24 hour Claritin to help with the bone pain that may accompany the Neulasta shot. There is an ongoing clinical trial evaluating Claritin to prevent the bone pain. Here is the link: (clinicaltrials.gov/ct2/show/NC...)
According to the clinical trial, one takes the Claritin (10 mg) once a day for 7 days beginning the day of the Neulasta treatment.
I had my first Neulasta shot with my 3rd round of Cytoxan/Taxotere and took the Claritin. I did not experience any bone pain. The Claritin doesn't help everyone but it is worth a try since from my understanding the bone pain may be intense. Just remember to ask your onco about trying the Claritin before you take it. If you are wondering why I didn't get my Neulasta shot until after the 3rd round, it is because my onco does not prescribe the shot until after one needs the shot and I developed a high spiking fever/chills that was treated with 2 antibotics after my second round of chemo. Fortunately, she called in the antibotics so that I wouldn't have to go into the ER.
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Goldie- Looks like your hair decided to leave on schedule ( 14 days after your first round). I know this side effect is hard but hold that beautiful head of yours up and keep moving forward. I got a free wig through the American Cancer Society's Look Good, Feel Good program. You may want to check to see if there is a session close to where you live. I opted not to wear the wig because it was too hot and it just wasn't me. I wore baseball caps, straw hats (Target), bandanas, Buffs or just went without a hat/headcovering. I would take the headcovering off whenever I was in the car because I didn't really care who saw me while I was driving or riding in a car. Do yourself a favor and try not to spend too much time staring at yourself in the mirror. You have so many more wonderful things to do.
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CONGRATS LAKEGIRL2!!!! So glad you got through your time in chemoland!!! I don't know if you are heading to rads. If you are, check out the Miaderm radiation relief cream. Here is a link :http://miaderm.com/. You can purchase it on Amazon. Ask your RO about what you can use.
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Hi all
I had the nuelasta shot my first round(April 24th..shot on the 25th) and the bone pain was intense. Claritin did not help me. NOT one bit..and I ended up with a kidney infection about a week later, go figuire. So I go into my next round on Wednesday and want to ask the MO for something stronger for the 6-8 days of bone pain(because it does seem to subside after that and is tolerable) What are some of you using when using the "big guns" for temporarry chemo related pain? What's a reasonable request bc my PCM won''t even discuss pain meds with me if I have an MO handling my chemo related SE. Any shared experiences would be appreciated.
Hope you all had a good Monday.
I am enrolled in LGFB for next Monday. I was fitted for a short wig(totally not what I was pre alopecia should be fun)
I know my real hair will come back but somehow I hope it doesn't..lol..not the same way it was b4
XXOO
runnermom1956
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I'm hoping the same thing, I'd like better less frizzy hair plz
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Runnermom1956- Do not hesistate to ask your MO for some prescription pain meds to help with the bone pain. You let that doctor know the intensity of the pain and how long it lasts. My onco always told me to call if I had a side effect that wasn't tolerable. She said that unless the patient lets the onco know what is happening, it is easy for the onco to assume all is well. Part of the onco's job is to help us get through the chemo. So don't be afraid to get some stronger pain meds. Hang in there!!!! You are doing great!!!!
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I know the hair going and the wait to see what comes after chemo is not easy. You gals, just keep your beautiful heads up and don't let the lack of hair get in your way of enjoying your lives. We take things one day at a time and one step at a time. When my hair was first emerging, I decided to go out without a head covering. Friends and other people just thought I had one of those very edgy diva haircuts. ( oh sure.... that makes a lot of sense, right when I had waist length straight hair for years!!!!) You just have to try to keep your sense of humor about these things. My overwhelming desire to get healthy and have more time with my family is just a part of my drive to get through all of this. Ladies, you are doing this and doing it well!!!!
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Runner mom, sorry the Neulasta didn't work for you.
When I went for my shot they has said to call if I experienced any bone pain. They had also said they would make note of it and lower the amount of Nuelasta at the next shot....so maybe they can lessen the amount they will give you.
I agree with the others, you shouldn't have to be uncomfortable.
For me the Claritan 24 seems to have worked. Although yesterday, day 7 after first chemo, day6 after Neulasta, I had some very unusual pain in the "joint" where my thighs meet the hip, but in the front part of my leg. Would almost make me keel over if I stood the wrong way...keel from the unusual feeling, not from the pain. I wouldn't know how to describe it! I am still taking the Claritan, and I guess I will for a few more days...just to be sure. Usually I suffer allergies anyway, so it is doing double duty!
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I've had two chemo infusions and two Neulasta shots - the first time I took Clariton and ended up with excruciating bone pain but managed it with oxycodone. The second time I completely forgot about taking Clariton and had virtually no bone pain. I'm not relating the pain to taking Clariton, all I'm saying is I think our bodies react differently to each infusion and subsequent shots. First chemo I had diarrhea that lasted close to 2 weeks and I lost about 15 pounds...second chemo only 1 or 2 days of diarrhea and actually a couple days of constipation so I can't even try to plan on SE for my third, forth, fifth and sixth infusions. I'll just have to be surprised!
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I agree, often SEs are a surprise. I don't want to jinx myself, but my SEs are feeling more mild this second round than the first. I still feel like crap, but not enough for Percocet. Yet! It's day 6 and I'm actually cooking dinner. No diarrhea thus far, unlike round 1. I really do hate how fatigued I am, getting winded just going up stairs or taking a shower. Well, getting winded doing pretty much anything. I just hate it.
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Well, I'm glad I was already thinking about stopping at four treatments for logical reasons and had done some research (you all and my DH are my witnesses
) before this fourth treatment hit me hard, but it has been my worst so far. Spent the whole weekend and much of today in bed when I wasn't in the bathroom. Have had horrendous stomach and intestinal cramps, violent GI symptoms plus extreme fatigue and weakness and a low grade fever. I am starting to feel better now.I called my MO's office today and told the nurse that I had decided that I was comfortable stopping with the four treatments and gave her some of my reasoning. She called back a little later and said he was fine with that. They've referred me to the RO and his office should call me in the morning to make an appointment. I like and respect my MO a lot, but I think he just plans for everyone do six treatments of TC unless they proactively tell him they don't want to. I didn't see much about that plan that was tailor made to my diagnosis and didn't think 2 more treatments were a good enough reason to delay radiation any longer. Not that I'm looking forward to rads, but I think it is every bit as important to my outcome as chemo if not more so.
We're a little encouraged about my granddaughter. They got a second opinion today from a renowned oncology surgeon at Baylor. He said that with a pyllodes tumor it's not unusual to need 3 surgeries and that if he had been her surgeon, she might have still needed 3. He thought that the first 2 surgeries were very well done and he agreed with the other surgeon that because of her age, she probably won't need reconstruction. So the 3rd surgery is scheduled for next week with the original surgeon, who my granddaughter really likes anyway. Hopefully they won't need to take much tissue this time and she will heal up quickly and have all this behind her.
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AnnieLane- So happy to hear the update about your granddaughter. Glad to hear you are feeling better after that 4th round. As it was told to me, the side effects are cumulative.
AmyQ- No fun with the "C" train and the "D" train. I used to get a little "C" because of the Zofran I took. It was the trade off--- no nausea. I tried to eat a high fiber diet and also ate prunes (Sunsweet Ones which are sweet and moist) and drank apple juice. I tried drinking the prune juice but I must have drank that too often after my surgeries to prevent the "C" and I was unable to get that first sip down during chemo. Oh well.... Hope the side effects from these next rounds are minimal.
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Melrose, thank you for the words of encouragement. I am moving on to rads as my next step so I will check out the miaderm.
AnnieLane - I am sorry to hear about your last round side effects but glad to hear you are doing better. For me, round 3 was worse than I am feeling now after 4. We just don't know what to expect, do we?
I stopped in Marshalls today and found Nioxin hair booster and something called GrowFast which I haven't seen mentioned here but is an amino fortified hair growth shampoo from a company called Rozge. I am willing to give anything a try in the next few weeks. I have kept a lot of my eyebrows and lashes (although I know those still may go) and am trying not to worry about the hair growth.0 -
Hi All. Have been absent a bit due to some family issues, etc. My first Taxotere (T) treatment was 5/1. Fifth Neulasta day after. (Onc said shot was $2,800- $8,000 sounds a bit over). Had bad reaction the first time and this (fifth) time. Bad bone pain and fever for about 4-5 days while taking Claritin. Now Onc tells me to take Claritin D.
Also T really knocked me down. Just now getting a little energy back. Left the house Sun for first time since for Mom Day dinner. Actually went to Alexandria today for shopping and bra fitting. Hubby drove. I am also hypothyroid and have fibromyalgia so think this plays into the energy thing too.
IBS has been extra bad. Had to take cramping meds in addition to meds for the poohs.
Worst though has been the hand-foot syndrome. My hand were blistered, swollen and burning like poison ivy. This lasted till about 2-3 days ago. Now skin is very tight and starting to peel. Looks like a chemical burn which i guess it is. Still stinging some. I've tried every type of cream I have including hydrocortisone cream. The best seemed to be Vit. E cream from Sam's or something called Deluvia cream I also got at Sam's. This is all natural Aloe cream with about 12 different organic oils plus plus. But today I found a big jar of good old Palmer's Cocoa Butter at Sam's. This seems to be helping best so far with this tight peeling skin. It' only starting to break and bleed in one spot on my thumb and I want to stop that. I'll sleep with CB cream tonight and gloves again.
Sorry for all the details but maybe will help someone else.
I suspect the nurse did something wrong with my pre-meds. The first bag she hung made me nauseous and sick and I could feel it burning through my body. Particularly between my legs. Had a couple of sores even at the crease of my leg. I called her right over and she quickly hung another bag. Then she this one will take care if the nausea the first one was to prevent.
No time for nail icing as she then quickly knocked me put with a heavy Benedryl dose that I could hardly wake up from at the end.
I've shared all this with Onc and he says he can fix it. I sure hope so. My next treatment is 5/22.
Will shut up now as I'm sure I've put you all to sleep. Best to everyone for good treatments and no SE's. My Onc said just think about all this knocking out the cancer. So I know it's all worth it.
Best,
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Deb-In-La, Yesterday I had that burning feeling also along with nausea and getting sick. Despite taking Compazine before I got there. My nurse slowed down the drip which seemed to help. That happened last time for me too. I hope my MO can change something cause I felt like crap for about 1/2 hour after and I still had Cytoxan to get through.
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