Cytoxan Taxotere Chemo Ladies- February/March 2013
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I couldn't agree more, Wrenn. You all are my lifeline.
There is a certain grace and peace in a embracing the new normal. Freedom, too. SC - I'm not walking today either. My day to watch Bones with my kids, get more henna tattoos from DD and simply roll with the reality of the day. So much better and healthier that way.
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OK question for you all-
What is the difference in having one treatment vs. 2 or 3 or 4 or 6???? Has anyones MO said why the 4 or 6??? And Wrenn- did yours say what your benefit was from having one treatment of TC??
I am actually considering NOT doing number 4...I probably will, but just wondering why each one and supposedly the magical number of how many treatments is magical..???
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KTF, Congratulations!!! What a cutie!
SC, Yahooooooooooooooooo!!!!!! I am so happy you are done in the chair! I hope your side effects ease quickly and completely. the nice thing about the last round is that once they are gone, they stay gone!
FDM, You rock! I love the outfits! Wish you could head through the children's cancer wing on your way to each chemo!
Audra, they determine the best number of rounds typically during early phase clinical trials. that being said, I know that 4 vs 6 has not been studied for TC, like it has for AC. For each round, the MO has to decide risk vs. benefit. That is why mine stopped at 4, rather than going to 6 for me. My oncotype was so low, and with no positive nodes, and a small highly Er+ tumor, he clearly did not think there would be any benefit to the additional 2, but there would be a lot of additional risk.
Had i done my original 6, I would be sitting in the BGC right now, for the last time. I am thankful that instead, I am washing my uniform for work because i work the overnight shift tonight. if you had asked me 6 weeks ago if I would have had enough strength, I would have said no way...it does come back. Still not 100%, but on its way. I am taking a selfie each week to record hair growth progress. About 1/4 inch so far.
Hoping for minimal side effects for all who've been in the chair this week.
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Audra -- I had only a half treatment for tx 4 (had the C but not the T) because I had a pretty severe allergic reaction to the T that was getting worse with each treatment. MO said the only reason they do 4 is because originally, they did four. So someone has to do research about the comparative effectiveness of three tx, and in the US it is hard to do that research because people don't want to take the chance that they don't get enough. It is possible, he said, that a country with socialized medicine will undertake the study with older patients (some health insurance systems go with less adjuvant treatment for older patients) and 5 years from now we may know that 3 treatments, or 2 treatments work just as well. Right now we don't have the evidence to depart from the normal regimen. That said, in my case it would have been dangerous to give me more Taxotere, and seemed risky to substitute another drug when we don't know how I would react. So risks outweighed the potential benefit IMO, and my MO said he was comfortable with that. Hope that helps your thought process -- it is a hard decision, but you have to do what is right for you.
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audra, I have pondered the same thing. I have tolerated both TX's well so far, but of course, none of us want to have more than necessary. My MO told me, that in my case, if I decided that I didn't want all of them, she would not have a problem with it. I guess bc of my DX, onco score, etc.
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Hello All my Warrior Ladies!
I was told my treatment schedule at first it was 4 days a week for 4 months then I got switch for 4 treatment every 3 weeks based on test scores.
Make sure you put conditioner on your scalp it helps and leave it in for 10-30 seconds. Some lades have told me Head and Shoulders works.
As for the lack of sleep I use children's liquid Benadryl. Since I"m allergic to most other sleeping aids. Also, get a wedge pillow if you don't have a recliner. For the leg pain, joint pain I found putting pillow between my knees helps.
For the mouth issues Biotene is great and baking soda and salt water rinse too. I found getting a water pick helped out as well.
SchoolCounselor- I found Claritin to work better for the shot then claritin. Also for the peripheral neuropathy, the B6 300 mg seems to help me. I couldn't walk or hold things on my left side until I went rogue and took it. There are tons of research articles saying it helps with chemo patients. University of Chicago has some good data on it. It is water soluble so you will flush it out.
Wrenn- vent we are here to listen and give advice. For the rashes I just try to use a cream aquafor I think works well.
I do themes on chemo, because the only thing I can control is where I wear and my attitude. Trust me Chemo is no easy joy for me so many issues. The allergic reactions, mouth sores, thrust, the peripheral neuropathy, bloody nose, ears, and stools, heartburn from hell, lack of sleep. and not being able to breathe. I get up everyday and force myself to do 15- 30 minutes of exercise. If I can't walk I get on a bike. Something to get me going. I find inspiration in others. I see Chemo as a battle and I won't want it to win. I call it my dark months. I have seen the damage it did to the women in my family. I'm stubborn when it comes to letting it take me down. There are days I can't get out of bed and get up and do the 15 minutes at least.
As for the costumes Amazon. My last chemo I want to do something fun. I would love to do the Sound of Music, but I would have to make them. The secretary ladies at the infusion center mention Marilyn Monroe and JFK. Since the last treatment will be hubby and me. The Wizard of Oz people will dress up to visit some kids in chemo. Someone on Facebook PM us asking if we would come and we are going to schedule it. As for my other appointments I wear goofy hats. We must find some smiles in the world of cancer. I think I got this from my mother when she went through cancer at 33 when I was 6 years old. She always wore something funny. I think she did it for me, but she is dead now I can't ask her why.
I think I will need to change MO at the end of chemo. This is what happen today:
just got back from the Otolaryngology (throat doctor), turns out I'm having allergic reactions to chemo. The doctor was very nice and mention that my MO (medical oncologist) should have realized that information given the chemo I'm taking meaning Taxotere. I told him she did not believe me, hence why she made me come to him now. Otolaryngology along with his other doctor and PA both said I'm her outlier and patients on this chemo do have allergic reactions and she should have believed her patient. Every patient has different issues with chemo. He told me I should have been getting steroid before, during, and after each chemo and Benadryl with each chemo. I told him yesterday was the first time the nurse stop my chemo and gave me Benadryl. He also mention of me taking an Epinephrine injection. Great more needles. So my last chemo, I will see him immediately after chemo to make sure we aren't doing permeant damage to my throat. Then I will meet with him 4 weeks after that chemo. I thank God for the nurse who gave me Benadryl because if she hadn't done that I might have been at the ER with a track tube so I could breathe. The otolaryngology said, that saved me from further damage. Today I have a fever and sore throat, which hurts to talk or swallow, but my breathing is better. Other side note: yesterday during chemo I meet a patient who had my MO and she dump her for the same reasons, would not listen to her about her side effects and told her she was have other side effects. I think after my last round of chemo I will be changing medical oncologist. You got to love the unknowns with each cancer treatment. On a positive note I feel like I won a small victory in my treatment plan.
Keep on fighting warriors. Vent when needed, go outside and scream, and laugh and hug each day.
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Awwww, FDM -- I hope you do find another MO -- you are an important partner in your treatment, and your MO should ABSOLUTELY be listening to you!
I had allergic reaction to Taxotere as well. My MO did listen (especially after I made a photo album of my rash/hives). Each infusion the reaction got worse. I can't imagine that rash being on the inside of your throat (basically) -- it must be so painful! Benedryl helped me too, though I didn't get it in the IV, just took the pills every 4 hours. Also I got a prescription for steroids from my MO during the time I had the hives. MO told me that I could potentially stop breathing if I had Taxotere again, so he didn't give it to me in the last treatment. Abraxane is another taxere which does not use the same suspension (which is actually what most people are allergic to in Taxotere and Taxol), but instead uses a human derived blood fat solution. It is very expensive, so some insurance won't approve it (and some MO's won't use it) but might be worth pursuing -- for what it is worth. My MO requested it for me and it was approved by my insurance, but in the end we decided just to do the Cytoxan only for the last tx.
Good luck -- I hope you find relief from the pain! (I like the Marilyn & JFK idea -- Lucy & Ricky would be fun too -- or Fred & Wilma Flintstone -- lol!!!)
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Fairy-Dog: I had a prescription for steroids (Decadron) to take 2 the day before chemo, 2 the day of chemo & two the day after chemo. Worked like a charm - although it sure made me hyper awake. I only had Benedryl the first infusion. I agree, you need a new MO if yours isn't listening. Good luck.
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I had the same steroid prescription as MinusTwo except I was only supposed to 3 doses. I misunderstood the prescription and took them for 3 days. My onco said it was fine because that is how she used to prescribe the Decadron. So for all 6 rounds of chemo, I took Decadron the day before chemo, the day of chemo and the day after chemo.
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Melrose - actually I have to admit I cheated a bit. A friend w/lung cancer told me how tired he got coming off the steroids - so on day 3, he took only one and saved the 2nd one for a day 4. I did the same & it worked well for me, especially since that took me through Friday every time & I could crash on the weekends.
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My MO has NEVER given me steroids before or after, I get some before infusion and that's it....is that not correct?
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Audra - Melrose & I are talking about an RX for pills, not part of the infusion. As with everything - every PS is different, every infusion center is different, every BC patient reacts differently. I'm very glad I had the steroids since I had no allergy problems & no nausea.
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Audra- Each onco is different about what pre-chemo drugs to prescribe to patients. Some prescribe steroids to be taken the day before chemo and some do not.
MinusTwo- I would take a Benedryl at night if I couldn't get unwired enough to get to sleep on those steroid nights. I also decided not to drive myself crazy with not falling asleep on Decadron nights. I decided that laying in bed was still resting and so was watching mindless tv on the couch was also resting...... I think I watched way too many Law and Order reruns.....lol
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I was getting an IV of steroids for the first two chemos. The third chemo she gave me the Decadron 4 pills before, during, after, and one more day. So four days of steroids. The throat swelling shut, and no breath was with each chemo. The nurse this time stop it and gave me the a bag of Benadryl. The question now is how much damage is done and if I will have to get an epinephrine in the last chemo. All I have to say is I'm defiantly going to write a letter to the board regarding this issue. Since I have to be on hormonal therapy for 10 years after chemo I'm switching MOs.
Thank you all for letting me vent. Hubby was really upset. I'm just pissed off, because for the last two chemos I kept telling her and almost had to go ER both times.
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Hi Ladies - I am jumping on this thread although it started 11 months ago. I am starting Cytoxan, Taxotere x4 shortly and I'm taking notes from all your great advice. I am frightened but less so compared with waiting to find out if I would be doing chemo. I will continue with my breast reconstruction. I am also one of the women who will try the Penguin Cold Caps. Between that and the TC SE management / prevention, I will be doing a lot of shopping this week!
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welcome Warrior!!!
Keep- beautiful baby
FDM- love love love the costumes. You must really brighten up the infusion center when you are there!!!
I take a steroid orally 2x per day the day before chemo and the day after. The day of chemo they give me a drip steroid AND Benadryl.
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wow, each MO is different BUT we each deserve the best standard of care and concern. It seems urgently essential to have an MO who listens. If he or she doesn 't, fire them!!!
FYI- I take 2 steroids once/ day the day before, the day of, and the day after chemo. While there, before the TC, they pump anti-nausea med and Benadryl into my port.
Welcome Warrior. This is an amazing group of women. (By the way, the women sitting beside me made her own ginger/ pomegrante juice ice pops to bring to treatment. Now, i will try them next time. )
So, my body feels filled with lead. It is day 8 after chemo. Just lifting an arm or getting off couch feels impossible. I read about this, but kind of scary now that I am experiencing it! Not sure there is much to say about it but I guess I wanted to tell someone. I wouldnt have believed this fatigue if I wasnt dealing with it now.
Thanks for listening, momat
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Thank you for the warm welcome. As I read through the posts I am getting a lot of very helpful information. Still, it is frightening.
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SC and others who had chemo this week -- I hope everyone is feeling okay (or at least not too horrible).
Today, I'm feeling much better than I thought I would given the increasing intensity of my muscle ache SEs this time around. Still kind of breathless, which is new, but not alarming. My RBCs are 3.86, HGB 11.6 -- I can see they are both low, but wonder how low they have to be before someone (besides me) gets worried. It's on my list of things to ask my MO next time. I am so thankful she is a wonderful listener.
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Warrior_Woman- Welcome!!!! If you have questions about anything, please post them. You are not alone here and know that your anxiety before the first chemo is very understandable and very normal. If you need to know about what to expect at the first chemo or icing your finger nails and toe nails during the Taxotere infusion or other help, just ask. We are here to help you and give you support.
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bluegrass, how do you know your blood counts? Is that from your chemo day or do you get them done elsewhere also ? I am beginning to bruise again, am breathless which is new to me & feeling increasing & profound fatigue. I wish it were Monday & dr office open.
Warrior Woman - fear is normal, but we do walk through this together here & are here with you.
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I hope you ladies with fatigue feel better soon! I got tired for a day or two my first round, but so far, not yet with this one. I have been vigiliant about making sure I have iron in my diet every day. I drink the "ensure type" energy drinks daily also. I guess sometimes no matter what we do, it still happens, but maybe that will help, if you aren't already doing that. I think fatigue is a very common SE.
((HUGS))
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Momat927 -- the RBC/HGB information I have is from the blood work that was done Monday before my last infusion (#4). My MO's office uses an online service called "SeeYourChart" that gives me access to all the labwork I've had done since becoming a patient. Both values (and my hematocrit) have been steadily sinking since I started chemo, and now they are all officially below the "low" level. That explains my breathlessness, which isn't helped, I'm sure, by living at elevation.
If your level of breathlessness etc is scaring you, I think you should contact the doctor on call at your MO's office this weekend. S/he will probably reassure you that your symptoms are "normal" for chemo -- hiss, boo! -- but if not, the sooner you get attention, the better. That's what the on-call doc is there for, so no need to be frightened all weekend!
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Bluegrass: I too have access to my chart - a great tool. I get blood tests two days before chemo & 10 days after. My center believes in transfusions if your HMG falls below 8. Mine fell to the low 7's ten days after A/C chemo 2 & 3, but made it back up to 8 before the 3 weeks ended (yes, the low range is 11.6). I avoided the transfusions even though the nurses pushed them, but did suffer the anemia side effects - fatigue, shortness of breath, dizziness, etc. A/C #3 my WBC went to 1.4 so I just stayed home & away from people. Some docs have you wait an extra week for counts to come up - which I did once during my Taxotere series. MO and I agreed last week to cancel my 4th & last A/C. It's surprising to me how low the numbers get before they stop chemo.
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MinusTwo, thanks for the info. It's comforting to know your MO thinks the really low end of HGB is below 8 -- mine was 11.6 at the beginning of the week, and my breathlessness isn't noticeably worse now. It's annoying because it makes walking and other good exercise harder to do, and I feel like a complete slug already.
My MO told me that getting more iron in my diet or taking a supplement wouldn't help, since the anemia from chemo is not an iron deficiency thing. Bummer.
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Momat -- I don't have access to my chart, but I asked for copies of the BC report each time. Mine were done right before infusion and again about 7-9 days later at my follow up appt with MO. I had some crushing fatigue after my 1st tx, and when I had my follow up appt, I found out my WBC was 1! Not sure that was the cause, but I didn't have as much fatigue with subsequent tx's when I had Neulasta. If you have not already done so, by all means call the on call MO -- they want you to call rather than worry all weekend!
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Hi everyone thanks for the thrush info. I called MO and got a prescription in case but the probiotics and yogurt seem to have done it! yaah! still had some kind of sores on back of tongue got a mouth sore rinse with preroxide in it and they seem to be slowly getting better.
Warrior Woman welcome I am also doing the Penguin Cold Caps and have finished round 2 of TC so far.
I get bloodwork the day of tx and approx 10 days this time it is 12 days later. They just give me a print out of my levels.
Momat I had that crushing bizzare fatigue on day 3 this time felt like I was drugged and made of lead hard to move definately disturbing... I think if it continues like that and does not pass you should let someone know.
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Here are some links to articles about what to eat to help your red blood cells.
http://www.livestrong.com/article/349946-foods-to-eat-to-increase-red-blood-cells/
http://www.redcrossblood.org/learn-about-blood/health-and-wellness/iron-rich-foods
This link will get you to a Food Data chart . Just click on "29. Iron" and you can read how much iron you need and how much certain foods have in them.
http://apjcn.nhri.org.tw/server../info/books-phds/books/foodfacts/html/data/data-fs.html
When my RBC started to drop, my onco told me to start eating foods to help get that RBC up a little. I asked about taking iron supplements and I was told no and that eating the right foods was better absorption-wise. For me, eating more iron enriched foods ( ie cream of wheat, Total cereal, lean red meat) helped my RBC numbers.
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THANK YOU SiSTERS! I just woke up ( slept in) & will reread all of this. I will DEF ask my MO about getting hold of my blood work as many of you do. I will read the sites & info you share about RBC & iron. My gosh- what would I do without you ????? I wish we could have coffee (or green tea) together today. Xo
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Question:
I'm SERIOUSLY considering changing my MO. I think I've commented how they always say 'You're so anxious, your are just anxious, you need to relax...,etc' and the latest was when I went for blood draw and they went back n forth sending me to blood draw room then infusion then back then back both saying how I wasn't scheduled or supposed to be drawn at their spots...well I also stopped and talked to my Dr's nurse on way out as she hadn't called me back with what to do about not sleeping. She said the DR said ,' I am on too many medicines already and he doesn't want me to take sleeping aid' I am on Ativan for sleep and Prilosec...HOW IS THAT TOO MANY?
2. The spots on my liver he minimized and said don't worry, lots of people have them while the Dr I had seen before said get Mri to see more that CT showed....anyhow I think I was weary and scared and just went with it...while it plagues me a lot and I worry about those spots...so I asked my MO to have another radiologist look at my cd of the ct of liver and see what their thoughts were...he said ok, and I have NEVER heard results...I have been wrapped up in chemo and feeling awful and forgot myself until recently when the worry came back...he never brought it up...??? Did he have someone look at it?? I will call tomorrow am and ask the nurse and see what she says...
Meanwhile slept under 6 hours again last night and wide awake...I am so tired..
Anyhow I have one last infusion and am going to call a different DR tomorrow to see about getting in this week...would it be AWFUL to switch in the midst of this?
I have a friend who had breast cancer 7 years ago and she recommended her people at Baylor Cancer Center, in looking it up they have nutritionist, mental health counseling, etc...ALL things my guy does not offer or act like I need...he also does NOT specialize in breasts- so I am only young person when I go in waiting room, infusion room, etc...and only bald one...
What are your thoughts?
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