Anyone on just Taxotere and Cytoxan?
Comments
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Hi Vince,
I tend to agree with Gina above. I have been getting the Neulasta routinely the day after, but frankly the shots haven't done me much good and I've ended up with very low WBCs anyway, along with low-grade fever, extreme exhaustion, and prohphylactic antibiotics (which I really dislike having to do). Other people it seems to help a lot, so go figure.
Vince, could you provide me with Susan's schedule for T-C therapy? Will she be doing 4 or 6 Txs or ??. Since she started on 8/29, if she's on the usual 21-day cycle, I assume the next one is on 9/19?? I am now the official keeper of the T-C schedule since otter graduated, and like to publish the week's treatments on Monday.
If any of the rest of you are facing any changes to your planned schedule, please let me know that too!!
Thanks!
Sandra
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Hi Vince,
I tend to agree with Gina above. I have been getting the Neulasta routinely the day after, but frankly the shots haven't done me much good and I've ended up with very low WBCs anyway, along with low-grade fever, extreme exhaustion, and prohphylactic antibiotics (which I really dislike having to do). Other people it seems to help a lot, so go figure.
Vince, could you provide me with Susan's schedule for T-C therapy? Will she be doing 4 or 6 Txs or ??. Since she started on 8/29, if she's on the usual 21-day cycle, I assume the next one is on 9/19. I am now the official keeper of the T-C schedule since otter graduated, and like to publish the week's treatments on monday.
Thanks!
Sandra
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Hi, Vince -
Just a word on the white count that first round. My onc doesn't do Neulasta on the first round either and I suspected it was an insurance thing because my ins. co won't authorize unless the count is "then" low. So I didn't get it first TC round, felt fine toward the 1st blood test which was 2 weeks after infusion. Felt fine because my red count was fine. My absolute neutrophil count was 236! (WBC 2.6) So they quickly taught me how to do 7 Neupogen shots to myself, prophylactic antiobiocs and told me to stay home away from people (didn't have a fever). I went to work anyway but was OK. After that Neulasta the next day after chemo. So do watch her very carefully days 7-14, esp. fever and crowds, this first round. Good luck to everybody.
Incidentally, I had my last TC round 8/21; had the most miserable days of my life days 3-5; to ER 8/28 with fever and cough; am OK now, on antibiotics and just want to get better! But this stuff is definitely cumulative!
Marilyn
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Marilyn-Gina-Sandra Thanks for the input. Depending on how she does this next week maybe I'll bring her in for an early wbc.
SherriM just being in the profession sure does not prepare one to deal with bc. Your updates are always inspiring.
Kerry - you are so right- I am suprised by how many of the nurses in my clinic told me about their bc after finding out about Susan. Many many success stories
Sandra - Susan is on 4 cycles at 3 week intervals so yes Tx # 2 is 9/19.
We are spendingv our anniversary pretty low key with dvds and quiet music.
Thanks to all of our new friends.
Vince
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This is my first posting - I started on Tx & Cy on 8/28. Do I dare take a week long trip to Lake Tahoe leaving tomorrow? I feel OK - a little fuzzy headache. No idea what to expect. Any advice? Thanks for this.Gail0
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Gail, it's hard to predict how you will do. Some people would be fine, some not. I think it might be best to stay close to home for your first round to see how your body responds. If you live not too far from Tahoe, and you could go home easily if you need to get meds for side effects, then it should be OK. By mid-week, and for about a week (days 7-14 if you don't have Neulasta, days 7-11 if you do) your immune system will start to hit its low point, so you want to wash your hands a lot and don't kiss children or hug lots of adults.
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Hi, Gail ~ I can only speak from my own experience. I felt fine on Day 1 & 2, but for me that fuzzy-headedness that started late on Day 2 got worse and turned into a couple of days of flu-like aching and overall extreme exhaustion. This happened with both tx #1 & #2. Of course, each woman is different, but I would be careful about venturing too far from home, especially after the first tx. Deanna
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Gail--I agree with Lani. Everyone is so different. After my first tx, my se's were worst on days 3 & 4, days 5 & 6 were okay, then bone pain from the Neulasta on day 7. I took Vicodin for the bone pain and was fine. Each of my 3 tx so far have been different, but the one thing that has been consistant is that days 3 & 4 are my worst. Don't know if that helps, but if you go, have a great time!!
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Gail, I will give you Cliff's notes version of my first TC tx (I'm on Day 11), for what it's worth:
Day 1: Fine. A little buzzy/wired from the steroids
Day 2: Ditto. Neulasta shot at 3:30 pm
Day 3: (First day of no steroids) Mostly fine, but less energy, getting gradually more achy and fatigued as day went on. Kinda like the flu. Appetite/tastes not quite normal, but no nausea. Constipated.
Day 4: VERY fatigued, severe bone pain (shins, pelvis, spine, neck), muscle aches, joint pain. Bone pain unrelieved by Vicodin or Percocet (or antihistamines or NSAIDs). Miserable, self-pitying, irritable, and weepy. Worst day, easily. Appetite/tummy as on Day 3. Oh, still constipated.
Day 5: Similar to Day 4, but not *quite* as severe, and gradually improving through the day. Started to get a headache. Constipated? Yes, thank you.
Day 6: Better still. Some bone/joint/muscle aches, pretty fatigued, but manageable. Headache getting worse, not responding to OTC pain meds, didn't want to take heavy duty narcotics, got a scrip for Darvocet.... sweet relief. Mouth started tasting horrible/metallic. Finally figure out the constipation after days of experimenting with every med and natural remedy under the sun! Miralax + 2 Senokot-S every night = normal bowels for me.
Day 7-8: Taking Darvocet for headache, but other than that, fine, maybe slightly less energy than usual. Mouth still icky.
Day 8-11 (today): Feeling pretty much myself! Mouth a bit icky, but better. Insanely chapped lips, and a lovely combination of acne and flaking dry skin on my face, neck and chest. Bowels normal, and without pharmacological support -- woo-hoo!
Not one moment of queasiness. (Okay, there was one. When I tried to rinse my mouth with my expensive Biotene mouthwash on Day 5 or so... nearly gagged. Just looking at it on my bathroom shelf makes my stomach flipflop. Need to look for an alternative!) I took dexamethasone (days 0, 1, 2), Emend (Days 1, 2, 3), Aloxi (IV Day 1), and Zofran (Days 4, 5) as scheduled, but never needed anything beyond that.
Next cycle, we are trying Neupogen instead of Neulasta to see if that helps with the bone pain, and Kytril instead of Zofran to see if that helps with the headache.
Hope this helps a bit!
Best,
Drea
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Drea,
Thanks for sharing your experience. I am scheduled to have my first treatment on Wednesday, 9/3. May I just say that I am verrrrrrry nervous! I have been incredibly emotional with an upset stomach for the past two days. I am crying at the drop of a hat. Is this normal? I feel like such a wimp. If I'm this upset now, what will I be like on Wednesday?
Any support/advice that anyone can offer would be appeciated.
Sherrie
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Sherrie, I think most people would agree that the days before your first treatment are the hardest and most of us got a little nuts. The day of the treatment is much easier -- the oncology nurses are nice people and everything usually goes easier than you thought it would. Two more days, you can do it! Take care -- Lani
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Oh Drea, Your cliff notes were so helpful! I can't believe I spent all of yesterday crying (Day 4) - just like your day 4! I thought it was just me. I appreciate the comments fron Lani & SherrieM - I didn't go to Lake Tahoe after all and it was a smart move but being in the desert heat added to my feeling of "missing out". I never expected the range of emotions and the dizziness and sadness I feel - I'm so positive and up normally - and walked into this without a clue. I can't imagine 3 more sessions of this. You are all so brave. And Sherrie1964 - it's silly but one thing that has supported me is my new puppy who just smiles at me all day.
Gail
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Drea, That's about how my treatment is this time and I am on my 3rd.. today is day 6 and I feel a little tired slight headache. Took Tylenol and benadryl last night. Slept o.k. kept waking up. I feel like today maybe I can go for a 15 min walk. I do feel kind of bloated and constipated. I will take some colace and Senekot today. Each treatment is a little different, but some things are about the same as far as days 3 and 4 being my worst. It seems like I have been craving bad foods, taco bell, pizza. Day 3 I wanted peanut butter cookies so bad, and today I want carrot cake if I have to make it myself
I am losing weight though I think I lost about 10 lbs since I started. When you are going through your worst days, it's hard to think you can go through it again, but you can. You just have to tell yourself this is all temporary, this too shall pass. Sherrie, I did get really scared before my first treatment, but it was very easy.. I couldn't believe it. Everything went smoothly. I do remember getting emotional about a week before treatment, but told myself I have to stay positve and strong to get through this. You can do it!0 -
Oh one more thing I just want to mention, I am such a scarry cat when it comes to taking medicine. I sometimes will just suffer through the pain before I take tylenol. This time my bone pain was very bad. So I had to take it. I do have Vicodin but never took it. I am afraid of side effects, Can anyone tell me how it make you feel? Do you have hangover effect:? I have tried ambien once, Resterol once, have nausea meds but never took, Ativan I take sometimes and benadryl I take the most, I try the natural stuff but it doesn't seem to work either.
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Sherrie1964, I too was freaking out about starting chemo. That 1st treatment and the "unknown" was worse than the actual diagnosis for me.
I told the RN that was administering the chemo that I was getting ready to bolt out of there. I told her the longer I waited the easier it seemed that I could leave. Needless to say, she got my IV going and went through all of the drugs that she was injecting. She was so reassuring. 1st off she told me she was giving me Aloxi to head off the nausea (which worked for me 100%), then I think it was the Decadron - steroid, that had me feeling likeI couldn't stop moving and cleaning for 2 days (that was great - I want more of that). Then she told me she was giving me Ativan - to help ease the dash out of the room feeling. There were other things too, but after the Ativan I was falling asleep and relaxed.
I went through the rest of the treatment must have been about 2 hours after that. It wasn't really all that bad - the worst part was getting the IV started - and that was just my fear of needles - she got the vein the 1st time : )Initially I felt really out of it - kind of hazy.
I did not have enough trouble to really complain. All I can say is keep yourself hydrated - I did get a UTI and that was not fun. I've been drinking a lot since and haven't had that again...it stunk because the meds for that got me going on a yeast infection.
Other than that, I have had aches and pains - mostly in my knees and my teeth.
Be sure to get your wig while you still have hair, it makes the impending loss easier when you know you have that "back up". I got so many complements from complete strangers when I started wearing that wig. I even had a lady at AT&T question me as to what color I used - my hair was so shiny!
It is all over so fast, I have 1 treatment left and it feels like I was just getting started yesterday with all of the concerns & worries that you & everyone else has!
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Thanks everyone for your encouragement!! I feel better today. My DH and I are just getting ready to take my yellow lab - Molly for a walk. Gail it's really not silly that your puppy cheers you up. Pets just love you unconditionally....
Well, less than two days to go. I plan to keep a diary, so I will let you all know how things went.
Best -
Sherrie
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Schedule for Week of September 1st:
Monday, 9/1-lanihardage (#3 of 4),
Tuesday, 9/2-terridwo (#4 of 4),
Wednesday, 9/3-phillydee (#3 of 4), Sherrie1964 (#1 of 4),
Thursday, 9/4-judianna (#6 of 6), Rickster (#1 of 4)
Friday, 9/5-Darlene53 (#3 of 4)
Congrats to terridwo and judianna, who appear to be finishing this week. Please get back to me with any corrections.
Sandra
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Gail ~ I'm also in the desert (Bermuda Dunes), so know exactly what you mean about being stuck here and missing out! The heat has also been a general misery factor to contend with, especially when it tops 110 or on those recent humid days. But, you will see, you are strong -- stronger than you know -- and the weeks go by, and you will get through this. Deanna
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Hello & thanks to everyone for your support and belief that I can do this. It's comforting to know that you're out here in the desert, too, Deanna (sorry!) But we know the winter brings those beautiful days (I do a lot of horse riding in the canyons then).
Sandra, add me to the treatment list and thanks for the support. My # 2 is on 9/18.
Lani, hope things went OK yesterday, and to everyone else who has treatments this week - strength & ease.
~ Gail
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Pinky,
Hello I will be starting my first Tx on 9/9/08 and I admit I'm very nervous. I have found all information to be very helpful. After my first treatment I will post my experience. I'm glad I have found a forum where I can voice my concerns. Sometimes family and friends may find it difficult to understand what you are going through even though they have been wonderful. And when I tell them I will lose my hair they are still in denial. So thank you so much for your stories.
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Robichson,
I will be starting my first tx 9/9/08 and I'm glad to have found a forum where I can voice my concerns. I am very nervous and found the information I have read thus far very helpful. After my first tx I will make sure I post my experiences. Even though family and friends have been very helpful sometimes they can be in denial about what you may experience and once of the fears that everyone has is about me losing my hair. Some don't believe it will happen and for me not to jump the gun and cut my hair a little shorter. And my onc told me I would lose my hair and I'm okay with that because whatever is going to help me live longer I'm going to do it. So how does one prepare family members to understand that this is part of the process? Thank you.
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Robichson, I understand totally what you are going through with the hair thing, One of my sisters didn't want me to go through chemo because of it. I told her what you said What ever it takes to help me live longer. Hair is something that can grow back. I always had long hair. Never cut it past my shoulders, so this was really a change for me. I just kept thinking about a new me, new hair do's and trying new wigs. When I cut my hair to about an inch long, I thought I would look funny, but It didn't look bad. I never knew my head was this small
But my hubby does like short hair So I got some long hair wigs, I like the wigs I bought, but right now they are kind of hot. But when I go places I will wear a wig. I am on my 3rd treatment now, today day 7 I feel o.k. not a lot of energy, but each day it gets better. I was very nervous too.0 -
Pinky,
Welcome aboard! Sorry you have to be here. Could you please drop me a note and let me know how many treatments of T-C you will be receiving and when? I'm the official keeper of the list and we like to let everyone know on Monday who is "stepping up to the chair" that week. Hope things go well for you.
The baldness issues are difficult for everyone and family sometimes over-react, making it worse. Initially, I would always wear my wig when my family was around as I wanted to protect their delicate feelings. But as the summer heat wore one, I thought, the heck with this. My adult kids were initially a little uncomfortable seeing me bald, but my grandchildren were enormously amused. The old folks (in-laws) are another matter. They are so steeped in fear about cancer that there is no way to lighten them up about the hair loss. They don't want to see it. I've given up and just wear the wig. I'm sure they think I am dying because I am doing chemo. I find it enormously difficult to be around them and am avoiding their company as I don't need that kind of downer right now.
Some people have involved their kids in very active ways. One gal let her teens shave her and they left her with a mohawk! I have been thinking about letting my grandkids draw eyes and a face on the back of my head the next time they're here. The bottom line is that family will take their cues from you. If you are devastated and embarrassed, they will be too. If you are comfortable, it will help them be ok with it.
I say this, but I also have to add that I am NOT comfortable being out in public without my wig or some kind of hat gizmo on my head. Really do not like being identifiable as a cancer patient by strangers. I admire women who can be more "in your face", but I'm just not one of them.
Regards,
Sandra
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I agree with you Sandra, I too am not real comfortable in public without something on my head, but around family, I will walk around with nothihng on my head, because they know that I am going through chemo and it is expected.
Audrey
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Anyone NOT lost their hair?. I haven't lost any yet--- day 16 after first treatment. Is it just too soon? bonnie
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I too wear a wig in public all the time, as I have not told many people about my bc and do not want to run into people I know with the scarf that screams cancer on my head. For close friends and family, I usually also wear wigs, though I have several of various colors and styles, so they know it's a wig. With my immediate faimily, I wear soft hats or scarves at home, and I sleep bare-headed, as it is more comfortable.
Sandra - it's funny how people of our parents' generation have such a mortal fear of cancer. You're right, they immediately assume we're all dying of it and look at us quite pathetically. My father in law can't even speak to me (guess he figures my ears and voice went the way of my hair with chemo!). Probably relates to the way cancer was perceived 30-40 years ago, and also might relate to their own feelings of vulnerability as they get older.
Gina
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Hi, Sandra ~ I would love to join this TC group, too. I'm also on the Aug 08 chemo board -- a super group of supportive ladies on a variety of chemo regimens. I started TC 8/6; #3 tx (of 4) will be 9/17. I think it's great the way you keep track of everyone!! Deanna
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I will have 4 TX every 3 weeks. Thanks
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I will have 4 TX every 3 weeks. Thanks
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I finally was told today that I will be on TC every 3 weeks. I will have 4 treatments of it and then a 5th treatment will be of something else. I am not looking forward to this but it is a necessary evil. I will have my port put in this Friday and then my first chemo is next Th.
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