Cytoxan Taxotere Chemo Ladies- February/March 2013
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Toby - I called my Onco today and asked about my medical records being online. They said I never responded to their email -- MY BAD!!!
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Has anyone had experience using medical marijuana for the bond pain caused by Neulasta? I had my first TC on Tuesday with Neulasta Wednesday. The worst side effect so far is the bond pain and I think if I could control that I'd be better.Any good ideas about where to get good info about medical marijuana?
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I've only seen medical marijuana used for nausea, not bone pain. Most of the people on the board use Claritan before and after the Neulasta to combat bone pain. I know that med marijuana comes in an ingestible form so it doesn't have to be smoked. My MO does not like med marijuana, so I hope I won't end up in a place where I need it.
I'm sure someone else has more info to help you, Tommy.
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Tommytoo- Never used medical marijuana for the Neulasta bone pain. I took the Claritin the morning that i received my afternoon shot of Neulasta and continued to take that regular 24 hour Claritin for 7-8 days. That is not to say that I didn't have muscles aches and bone joint pain because I did have those. Those are side effects of the chemo and may not necessarily be from the Neulasta. You may want to talk to your MO about what you can take for the Neulasta bone pain. I've read that some take Tylenol or Advil or Motrin and some take a combo of those two and if the pain is severe, some are prescribed prescription pain killers. Try to check with your MO about taking any OTC drugs and to get his/her okay. Hope you feel better soon...... Hang in there!
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Tommytoo - I got the worst bone pain from Neulasta shot too. I had to take Advil and Vicodin alternately every 4 hours just to survive. I talked to my onc and she decided to reduced the dose in half this time, ordered hydration IV on the next day, also gave oxycodone. It seems to be helping. I still feel some pains but not as bad as before. A lady from my support group suggested taking Arnica bath. I tried that last time and it helped too. But only for a few hours. Hope this helps.
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my bone pain was awful......got through with some hydrocodone only as needed. Usually the claritan and aleve works....did not for me...worse SE there was. But in the scheme of things, manageable.
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and my MO did prescribe same as Hockey cat. I do not want to postpone any treatments. Going to look into acupuncture also
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You gals with Neulasta pain..... I hope each of you will find right the combo of pain meds for that Neulasta bone marrow pain. I can't begin to imagine how much pain you are in. Keep pushing forward and getting help whenever you need to.
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Ladies, I too gave in last week and called my doctor for the bone pain. Between the rainy weather, changing of the seasons and the usual aches and pains, I couldn't hardly move. Usually the Claritin and Aleve work for me, but when my husband had to help me off the couch, I knew it was time to get help.
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no matter......my SE gas is so bad I had people running from me at the mall...time to get all my boys back!!!!,
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Just blame it on one of them!!!!
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I am in my second week post my first chemo treatment on the 8th, so far the side effects haven't been too bad. Mainly felt tired and like I had the flu a couple of days after the treatment then started feeling good again about Wednesday. I am not experiencing any real neuropathy, I can occassional mild tingling in my fingers and toes that doesn't last very long, is it safe to say it won't be a problem for me? Also, no hair loss yet, is there a chance I get to keep my hair? Or are the worse side effects to come?
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I had bad pain for a few days after the Neulasta shot, Aleve did not help but I called and my surgeon said it would be ok for me to take 3 ibuprofen and that did take most of it away so you may want to ask about that. I also take Claritin. I take it on a regular basis anyway for allergies but I don't know if it helped with anything or not.
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snoke1337 - Welcome!!! Glad you found this discussion thread and hope you find some support and comfort as you travel through chemoland. As for the hair, I noticed my hair started to fall out beginning on Day 14 after my first round of chemo. At first, it was a few strands and then it began to accelerate every day as I headed into Round 2. My hair began to feel dry. My scalp felt sore, too and it felt better when I was in the shower. Yes, the shower is where I had my moment of truth with my hair. That is where I learned that my hair was leaving me because handfuls of my hair began to come out. I had a choice then--- I could collapse in tears and sit on the shower floor or tell myself that ok... my hair is leaving and I am still okay. I choose the later. I never shaved my head but instead put my short bob into little pony tails and snipped those pony tails off. I had my husband clean up my new short short boy cut with his trusty electric clippers and went on my way. Yes, my hair did continue to fall out until I was left with a very thin veil of hair. Fortunately, my hair grew back evenly. Who knows.... you may be lucky and not lose your hair. Keeping my fingers crossed!!! Always remember that no matter what, you are beautiful and you are still you with just a few changes on the outside.
As for whether you have neuropathy, you may want to chat with your MO about the tingling. I iced my fingernails and toe nails during the Taxotere infusions in each round. I had minimal nail damage and neuropathy. Not all MO's let their patients ice.
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Snoke, So glad you aren't having bad SE!
I had my second infusion last Tuesday. I am having some tingling in my finger tips... which didn't happen with the first infusion. Of course, I was so nauseated the first time around that I probably wouldn't have noticed much else.
Melrose (who is awesome) shared good info with you. On day 14 after the first infusion, I started to shed. By day 16, I was losing enough hair in the shower to make a hamster. At that point, I buzzed my hair short, #2 level, not to skin. It isn't recommended that you go to bare skin because your skin is so sensitive and the spikiness bothers people. I'm nearly bald now, but have scattered hair on my scalp. My skin is still sensitive.
The SE that my MO warned me might get worse as I go through treatment is fatigue. After all we are putting our bodies through, that makes sense to me.
It's up to you, but if you make your diagnosis and treatments "public" it can be easier for us to follow your treatment and answer questions more specifically.
Hope you continue to feel well!
Poppy
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Snoke - Just in case, the Claritin recommended is the basic - NOT Claritin "D".
Melrose is GREAT!!
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Snoke, Welcome!!!! I also cried in the shower when I came up with handfuls of hair. But, by that point I had already had my BMX, the cancer was gone and all that mattered was that I was still alive. I did have my head shaved, but don't go all the way to the scalp. It is a scary site the first time you stand and look in the mirror, as you watch the tears roll down your face. I am not a Joan Lunden, more of an Uncle Fester. I still have arm hair, eyelashes and eyebrows, but I don't have to shave my arms or legs or anywhere else. My neuropathy started with a tingle here and there, tell your doctor at that point. Don't wait until it gets bad, it really is hard to walk by then. I have had neuropathy before, so don't wait. I did not ice at all, however, I do use the Sally Hansen Hard as Nails and keep several coats on for about a week after infusion and I have had no problems with nails. I had a different SE after each infusion. I can't wait to see what happens on Thursday!!!! We would love to know your diagnosis and treatment if you are willing to share.
Poppy - A Hamster??? You are too funny!!!I
I agree, Melrose is awesome!!!
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All of you gals are so sweet and kind to me..... thank you for the wonderful words!!!!!! This bc thing that happened to me isn't really about me but really about the people I meet and experiences I have along the way. This place is all about you who come here for support and not about me. I take life as it comes and keep moving forward and most of all continue to stay positive and hopeful. You see, my mind has never been ill; just my body. So at this point, I continue to do my best to take care of my body and mind. Sending many many hugs to each of you!!!!
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Melrose: Love your attitude and thank you for continuing to share your experience w/all of us.
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Thank you everybody for your experiences and advice! I love that this discussion board is on here. It is such an encouragement.
I woke up this morning with hair all over me and a bad headache. I combed my hair and ended up with a BIG hairball so it is beginning 12 days after first treatment. I am debating getting it cut short today, it is currently shoulder length.
Thank you Nomatterwhat for your advice, I am going to start putting the Sally Hansens nail polish on my nails today.
I don't know how you put your diagnosis on so it shows at the bottom like MinusTwo but I am Stage 1B, triple negative BC, bilater mastectomy with reconstruction, lymph nodes were clear but I am BRCA1 positive so after my chemo is over they want me to have a hysterectomy. I have a very strong family history of cancer so they want to take every precaution. Including me, there were 8 in my immediate family that had breast cancer, the youngest was my beautiful niece diagnosed at age 25, she passed away less than a year later. My mom being the only survivor. Now I join the battle. I also had an aunt and a cousin die from ovarian. I am not being gloomy but those are my statistics. My mom was determined to beat it and remained positive throughout. I am sure that her positive attitude helped contribute to her survival.
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snoke1337- You will make the hair decision that works best for you. I cut my hair ( yes, I did it myself,... lol) from the short bob to a short short boy cut ( aka pixie). i did it because I had become frustrated that I was finding hair everywhere.... on me.... on my clothes, my pillow... etc. If you start finding that your stubs are getting caught in the pillowcase, you may want to try sleeping on a satin pillowcase. For some reason, the hair and hair stubs do not seem to get caught in the fabric fibers as they do with cotton pillowcases.
I agree with MinusTwo about the nail polish. I switched from the Sally Hansen Hard As Nails polish to Essie Bottom/Top Coat polish because it seemed to chip less often. Try to keep your finger nails short and wear rubber gloves when washing dishes or using cleaning products. Also try to not use your fingernails as tools to open cardboard boxes or removing staples. If you garden in your yard, wearing garden gloves is a good idea to avoid inadvertent cuts.
We are here for you so keep pushing forward.
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This is the combination my doctors are recommending for me. I may decide to change it. I know most people don't design there own chemo combo but I'm going to. I'm also going to refuse steroids. I have never taken any prescriptions or over the counter meds and I'm not going to start now. My oncologist said I would have to take steroids because my BMI right now is 15 and she said I will lose more weight during chemo. I'm at the weight I've always been, I think my doctors aren't used to treating endurance athletes like me. I'm not worried about weight loss, I'm worried about muscle loss! Anyway, thanks for all the info here.
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Hi natural healing.
I completely get where you are coming from. I'm a competitive athlete, but more so, have lived my life as naturally as possible. Home births, no vax, breast fed all 3 children 15-18 months, I never take meds. Was 100% sure no one in my family would *ever* do chemo, rads, etc. if diagnosed. (And I was certain it would not be me)
Then, I was diagnosed at 45 with triple negative breast cancer. I have a research-based masters degree and believe wholeheartedly in scientific research, but also, whether that research is applicable in real life. I worked my ass of studying this disease, its differerent presentations and came to the conclusion that with this disease, you *might* get away with a holistic/natural approach IF you're stage 0 and have an EXTREMELY slow growing and NON-agressive cancer. (I'd still get it cut out) Anything other than that, you're best bet, is conventional tx COMBINED WITH holistic. Do your research. Sure there are people out there that *beat* cancer in anecdotal evidence, but, is their cancer identical to yours? How about their genetics and/or chemical make up?
I'm a stage 1a and am doing chemo AND rads. But I also switched over from my bodybuilder type diet to a Vegan diet. Quit coffee. Will never touch alcohol again, and reintroduced cardio. Did I lose some muscle? Yep! Is my life worth muscle loss? Yep. I'll get it back. You will too.
Triple negatives like us are VERY receptive to chemo because if how quickly our cancer cells are dividing.
I totally get you and where you are coming from. Let me know if you want to chat athlete to athletes.
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snoke - I slept w/a "sleep cap" and that greatly reduced the loose hairs all around the house. Not sure where you are located but it may be too hot for you. To fill in your personal info, go to "My Profile" at the top R of the page by Log Out.
Natural - I too dislike any prescription drugs & didn't take any before chemo. And don't take any now 10 months PFC. I did however take the Dexamethazone (steroid) the day before, day of and day after chemo and NEVER had any problems w/nausea. That made it worth it for me. I did loose 60 lbs due to diarrhea that I didn't need to shed, but that was because I couldn't eat or drink mostly due to taste issues.
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Snoke, You can add your information under your profile after you log in. We are here for you!!! I am sorry you have such a strong breast cancer running in your family. I have my genetic testing tomorrow to find out if I have the BRCA. Of all the tests and all the things I have been through, this is the test and results I dread the most.
I could use some positive reinforcement at this time, ladies.
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I'm hoping that the veterans here can give me some hope. Today is day 6 of my first TC, and I can't remember feeling so desolate. The good news--nausea is managed by meds, no fever or infection noted, no allergic reaction to the Taxotere. No excruciating pain since the night of the Neulasta shot. But the fatigue, the unrelenting achy joint pain, the weird things that come and go--a red rash on one arm that fades, mouth sores that are starting and taunting me, constantly changing gastrointestinal symptoms--is there an end? I can't imagine working--I can barely stay out of bed for two hours at a time. But I don't really sleep either (a few hours at night with Ambien). I've always felt that I can get through anything, but I don't know that I can tolerate 4 cycles like this.
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TommyTune - yup - it's one royal bitch. But you CAN get through it. I always felt horrible for the first week to 10 days, then pretty good for the remainder of the 3 weeks. Call your doc for the "magic mouthwash". It makes a lot of difference. And next infusion be sure to suck on ice while they're doing the Taxotere. As for the GI problems, I had diarrhea each time. Not fun but I felt lucky it wasn't nausea. You can get meds for that too, and stronger RX meds if over the counter doesn't work. Do talk to your MO!! Hang in there.
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Tommytoo- Hang in there!!!! You made it through the first round and now is the time for rest and taking care of yourself. Keep an eye on that rash and try to keep a record of your side effects on a calendar. It will help you when you have your next appt with your MO and when the MO asks you how you did after the first round. As for the mouth sores, you may want to try rinsing your mouth several times a day with the salt/baking soda/water solution. Here is the recipe I was given --- 1/4 teaspoon salt + 1/4 teaspoon baking soda + cup of warm water. Just make a fresh batch of this solution every time you swish. I sometimes added a little more salt which seemed to help some. I don't know if you sucked on ice or drank icy water during your infusion. That may help prevent them the next time. As for the gastrointestinal symptoms, the chemo is not easy on that part of the body. Make sure you continue to hydrate, hydrate, hydrate. The fluids help flush the chemo through the body. Now, the next thing I'm suggesting is that you call your MO to chat about some of your side effects. It is part of the MO's job to help you through chemoland and for the most part, they want to help you. Just call and let them know and ask for some help. It is okay to do that and it doesn't matter when you call... whether it is after hours or on a weekend. There should be an on call MO available to help you.
While I was in chemoland, I had two books that helped me deal with eating and taking care of myself. One is Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD. This book has menus, eating tips, recipes and has chapters on how to deal with certain side effects and what to eat when one has certain side effects. The other book I had was the Cancer Fighting Kitchen by Rebecca Katz. That book has wonderful pictures and great recipes. I found having books right at hand helpful when I wasn't feeling well enough to surf the net for help.
Hoping that you start to feel a little better soon. Sending you positive calming and healing thoughts and energy...... hang in there.....
We will hold your hand as you go through chemoland.
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Tommy, I agree with MinusTwo, this is a royal bitch!!!! I suck on ice during the Taxotere and then used the baking soda/salt mouthwash followed by the biotene at home. I have a different SE every treatment. I had slight nausea one time, lost my sense of taste, but gained my sense of smell another time and this third time I have swollen legs and ankles and have to wear compression stockings. I cannot wait to see what happens after the next treatment. We can do this!!!! We are here for you!!!!
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Tommytoo -
Everyone is different, but I will say that my first infusion was by far the worst. Not only did I not know what to expect, but my side effects (especially stomach ones) were much worse than they've ever been since. All of the infusions since have been easier to manage. Do talk to your MO - they have things that can help with most of this.
Hang in there - we're all here rooting for you!
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