Cytoxan Taxotere Chemo Ladies- February/March 2013
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GailAnne....I have that low stabbing pain...kind wrote mine off the the IBS. Dont know..
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Have had every SE known to man this time infusion #2....rash at injection site, rash on my hand, oh heck yada yada yada and on it goes. Too tired to type them all. Bet a bunch of you all are in the same boat tonight !
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Gail Ann
Could you be ovulating or possibly have an ovarian cyst? I have had it in the past before the breast cancer stuff. Severe pain can be a rupture of a cyst. Call the doctor.
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I just reread your post GailAnn did you have your ovaries removed? If so sorry for the above post. I am very tired so I may have read out of context or missed something
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Yes, Mimi8, thanks for sharing your story!
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Hi All:
I just got back from 3 days in hospital due to low white count and temp over 101. I was 9 days out from first infustion. I haven't taken Neulasta but have been told that will probably be added to my regimen. From the posts here it sounds like there will be bone pain. What types of meds are available to lessen that type of pain?
Have any of you telecomuters been able to work thru it? I am a little concerned about round two, neulasta and other possible SE.
What is the steroid crash info? If I take neulasta do I need a steroid? What is the crash? I had some Nupogen in hospital with cortisone/steriod, so, again am a little nervous about what may lie ahead.
Also, any of you who are taking neulasta: are you on 3 week intervals for infusions? With Nuelasta can you change it to 2 week intervals? Would that be possible? wise?
Still have my hair, I had it cut short and will shave it when it starts to clump etc. Have a wig and some hats. I am fortunate to be able to work at home, but have heard that chemo brain may make me forgetful? Will have to deal with that too.
Whew, it has been quite a roller coaster ride so far and I'm only1 down 3 to go.
Thank you all for posting. It is a great source of info and comfort to read these posts.
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Tomorrow is round 3 for me which will mark the 1/2 way point for me. I am sort of dreading the weekend and what it will potentially bring. It's frustrating not being in control and unable to do all the things I normally would do. In a positive note I do like getting extra sleep.
Mimi8: thank you for sharing your journey. It's good to see someone who has made it to the finish line. That's where I'm headed too!0 -
btdemo, not everyone has bone pain from the Neulasta shot. The over the counter antihistamine, Claritin helps prevent it or minimize it for many patients. You take the Claritin the day of the infusion and for about the first week afterward - once a day. Many drug stores care their own cheaper version of loperamide hydrochloride,which is the generic name. I have had the Neulasta shot after my first two infusions and haven't had problems with bone pain.
Most of us are getting a sterioid by IV before the chemo drugs on the day of treatment. The steriod wears off after about two days and then you tend to feel the side effects of chemo pretty hard for a few days.
I, too, work from home so far have been able to work a full day most days. It is a struggle for about day 3 through day 10 after a treatment, but after that it gets easier. I probably would have missed a little more work, but I am trying to save my sick time for when I think I'll need it most as the side effects may get worse with cumulative treatments. I don't want to run out of paid sick leave. My second treatment was a week ago.
I don't think Cytoxan and Taxotere could be given closer than 21 days apart, because of the "nadir" period when your red and white cell counts are low. I think even with Neulasta you need 21 days to recover between treatments.
So sorry you had to spend time in the hospital and hope things go better for you from here on out.
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Btdemo- Glad you found this thread and hope being here helps you get through your rounds of chemo. The regular 24 hour Claritin is what some take to help prevent the bone pain which may result after receiving the Neulasta shot or Neupogen shots. With that being said, understand that muscle aches and joint pain are side effects of our chemo regimen. I have read that some take one Tylenol + 1 Advil/Motrin every 4 to 6 hours to help with the pain. Before you take any OTC meds, make sure to talk with your onco to make sure it's okay to take those meds. If your pain is very intense, call your onco. He/She can prescribe some pain meds to help ease the pain.
To answer your question about the steroids ( ie Decadron), the steroids are to help prevent the nausea. They have a tendency to get one wired and more energetic for a few days after you take them This may also mean that you may have trouble sleeping at night. If you find yourself awake at night and unable to sleep, try not to fret about not sleeping. Fretting about the sleep situation may make you more anxious. My onco said it would be fine for me to take one Benedryl tablet before going to bed so I could easily fall asleep. I did not take any sleeping prescription drugs as some do. The steroid crash is what one experiences because one may no longer feel energetic and peppy a few days after the steroids being taken. You may feel tired and lethargic.
When you are tired, you need to rest. When you feel shortness of breathe from walking and climbing stairs, you need to rest. Listen to your body and most of all be easy on yourself. We expect a lot of our bodies during this time and our minds want to do much more than we are physically able to do. Try remember that there is a lot of stressful physical things happening while you are in chemoland.
As for as your blood counts, the Neulasta shot/Neupogen shots are given when the need is demonstrated by a patient ( ie high fever; low white cell counts). One reason that those shots may not be automatically given after the first round of chemo is that the Neulasta shot is expensive and not all chemo patients need to this bone marrow boosting shot. If you do need the shot, remember that the shot may help keep you out of the hosptial in the future and is there to help you. As for feeling more tired as you have more rounds of chemo, if you receive a copy of your blood labs, you may want to look at the red cell blood counts. It is possible to help those counts through diet by eating red meat, spinach, iron enriched cereals and other foods. If those red counts drop, you may ask your onco if you can take an iron supplement.
Our chemo regimen is given in 3 week intervals unlike the chemo regimen of AC + Taxol. The AC may be given dense dose (every 2 weeks). If given that way, those chemo patients receive a Neulasta shot or a series of Neupogen shots the day after that infusion is given. Like GailAnn said, with our chemo regimen, the body needs 3 weeks to recover after the infusion. When I had chemo, I had my infusions on a Tuesday. I felt fine on Wednesday and Thursday. Friday would be the day that I would not feel so great and really feel the effects of the chemo (tiredness mostly). Saturday and Sunday, I would start to recover. I was very fortunate that my side effects were minimal and usually felt fine the 2 weeks after having chemo. I started getting a Neulasta shot after my 3rd chemo round (of 6 rounds) because I developed a high spiking fever and chills 10 days after my 2nd chemo round. My onco prescribed 2 antibotics and kept me out of the ER when I called her on a Sunday morning telling her that I had the fever and chills.
If you have any further questions, please post. You are not alone here and will get great support and help here!!!
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LW122713- Hope your chemo round was easy on you. Just 3 more rounds left!!! Wishing you minimal side effects!!!
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Mimi8- my father's side of the family are all Pittsburghers and all of us kids are Pitt grads. I currently live in the Lancaster area. Love the 'burgh!
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For you ladies that are between tx 2 and 3. I had much increased fatigue about a week after my 2nd tx until my 3rd which was 3 weeks later. Since that 3rd tx, 2 weeks ago my energy has come back. Not to normal, but certainly better than it was between the 2. I was afraid to get #3 because I thought I would get even worse. Hopefully that will be the case for you too.
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3 was definitely worse in the fatigue and weakness department for me. I'm expecting 4 to be the worst, but I will be done and I will put up with anything to get this behind me. I feel so frustrated be so out of it when the weather is getting so nice here and I want to be active.
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HI Everyone, Hope you are all feeling well this evening. Had my second round today. I too had bone pain from the Nuelasta, beginning on the Tuesday after my shot (shot was on Friday). I was on the Claritin, but for this time I will be having a hydration treatment on Monday, hoping to ease the bone pain and other side effects and also my doctor prescribed a stronger pain med to help. I have lost most of my hair, and I had noticed someone had recommended Argan Oil, not sure if it was on this board, but was wondering if this was pure oil or what brand was used. If anyone else has a suggestion, for somethig to ease the scalp tenderness, it would be very much appreciated. I was also wondering if there was anyone else going through this with young children, I have a 7 and 2 year old. Another question, has anyone looked into the alkaline/acidic nutrition. I am all of a sudden worried about a reoccurence, and want to try to protect myself and family as best I can. Does anyone else feel weird about wearing their wig, I have one which is very nice, but I feel like I am trying to hide something or trick people when wearing it, which I don't care for people I don't know, but at work I feel weird about it. I have just been wearing my scarves and people have been treating me just as normal, not asking questions, but not treating me any different. Just one person who stared a bit : ) My son would like me to wear his George Washington wig, "it even has a ponytail Mommy." My childen and husband have definitely been the best during all of this. Thanks so much for all your help : )
I don't post often, but all your posts have helped me more than you all know. Thank you and good night, hope you all get a good night's rest, I know it's hard these days : )
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GailAnn and Melrosemelrose; thank you VERY much for the info and explaining the details. I will have a list of questions for my next Onco appt. I will pick up some Claritin(or store version), ask about Tylenol/Advil and look into some iron rich foods. I am so grateful for these posts. I know I can post here and get info that will be specific and helpful which is also very comforting.
I do take Decadron but guess I didn't know it was a steriod, thought it was some kind of anti alergic reaction med. I had 2 doses of Neupogen while in hospital and had some lower leg bone pain, so I will know to watch for that.
GailAnn: I too am concerned about preserving my sick leave and so far have been able to work at a pace that doesn't leave me exhausted.
I do have another question: is there a reason to talk to my Onco about maybe recalculating my Chemo drugs? I understand that the dosage is based on height/weight and body surface (?). Would this be something that could prevent bottoming out on white count?
Thank you
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btdemo- You are correct that the chemo dosage is determined by one's height and weight. When I went in for my chemo round, I was always weighed first and then my vitals were checked (blood pressure and temperature). Then I had blood drawn to check my counts. Once the blood report lab was released, that information along with my weight/heighth and other vitals were sent on to my onco who signed off on the pharmacy chemo order. With that being said, understand that the chemo does two things--- goes after those rogue cancer cells and also goes after healthy cells, too. This explains why your white counts may be plummetting. At this point, the best approach for the onco may be to have you take the Neulasta shot/Neupogen shots to help your bone marrow. Yes, I know that the pain can be tough but it means the shot/shots are doing its/their job by making the bone marrow work harder. You may want to think of it like a growing pain that one might experience as a kid. I've read on these discussion boards where someone's dosage was reduced; however it was only because some of the side effects were so severe. You can certainly ask your onco about your chemo; it's one way to let him/her know that you are an informed patient.
One thing you can do throughout your time in chemoland is to eat healthy and enough. I know that the taste buds go on vacay but your body still needs protein and other good things so it can repair itself. I was given the book "Eating Well Through Cancer" which had recipes, shopping lists, menus and great tips of what to eat when having certain side effects. It is written by Holly Clegg and Gerald Miletello, MD. The other cookbook I have is the "Cancer Fighting Kitchen" written by Rebecca Katz. That book has great pictures and recipes and is a great to just read.
Ladies- It's the weekend (almost)...... Have a wonderful weekend and of course with minimal side effects.
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Ms. btdemo,
Welcome ! Ask away and you will get your answers here Dear. Everyone has Great advice and will help wihout fail. Be safe and well with peace, luv and blessings too.
Carolyn
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Made it through the rest of the week pretty well. Will be out this weekend chasing down your recommended cookbooks and stock up on some ingredients before round 2 next Friday. I have to say that being informed like this is empowering and it chases away the big fears of the unknown. So, thank you once again!
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Thank you Lisa for you sharing. I had my first round March 1,my 3rd in next week. I'm certainly not feeling very spunky and nervous about going in. I'm on day #3 of this rash which bugs me. I think I'll call in Monday and see what they say. I feel a little down today,thinking that maybe this treatment is getting the better of me. I talk to all my healthy friends,and here I sit on a rainy day. Wearing this scarf can be sooo annoying sometimes. I do feel better sharing with all of you on this journey! I don't feel sooo alone!! THANKS
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This is actually LW122713 but had to log in as an alias because my account had been deleted??. Does anyone know how to get in touch with a moderator to fix?
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For those interested in trying the two cookbooks Melrose recommended, they are both available on Amazon.
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Hi everyone
I'm not on here a lot but should be...you are all so helpful, open, caring. No one told me anything about claritin except you gals and my onc. got right on board. I just didn't take it soon enough...I started it the day after neurlasta shot and have had a really hard time with leg, spine and chest pain...but ahhhh ATAVAN tonight...changed everything. I'm also doing Cold Cap Therapy and I really think it helps with everything..I've had no nausea, my energy is good and I'm walking a lot everyday...that, hydrating and working full time. I think the cold distracts my overactive mind and makes me forget what's going on. It's also pulled my fun, funny family together in a great way...even EX husband who never talks to me.( he's ocd I think and the perfect man for the cold cap king)...we have a pizza- practice party the night before chemo, then chemo day starts with the caps, the pre meds, then 30min of caps for the 2 hours of chemo and the one hour of hydration infusion...the day ends up racing with the dry ice buckets home and being dealt with for four more hours on my head....and my"village" cooking a wonderful meal for everyone. It's been an incredible adventure (hard to believe I said that) and I honestly don't remember the cold being too much at all ( of course i don't remember that producing my daughters was a problem either...so maybe chemo brain has already set in...of course the caps on the head with the sanitary napkins to protect the ears, the mole skins on my forhead, the caps themselves. then cold wraps on the wrists and ankles and the peas on the fingers and toes makes for an incredible vision. Never a crowded infusion room so there's a lot of laughter each time we're there.
I am worried aboutmy bad reaction to the neurlasta and about neuropathy. I will ask tomorrow about the L-glutamine. I had a 1.1 tumor, no nodal involvement, clear margins but am triple Her 2 negative so aggressive treatment was the advice and I'm glad I've done this. ...4 rounds three weeks apart and i just finished round two. HALFWAY THERE! White blood count after first treatment was about 2...so I have had no choice with the neurlasta this time and it's been hard for me. Felt terrible for the four days after the infusion...l-glutamine questions tomorrow for sure. Thank you all...you are so wonderful and the information shared just can't be gotton anywhere else. To everyone who is just starting (I'm gong into my third of 4 treatments so I guess I'm not brand new anymore)here's what I'm thinking has helped me
...gather information, ask every question you can think of: we can change our diet (I'm juicing everything in sight and make a great vegetable broth every week that takes me a week to drink...I've stopped drinking alcohol, am avoiding anything in a package and avoiding caffeine and most sugar),I hydrate like crazy, and walk everyday... But I really believe that the main thing we have control over is our attitude and this site helps that happen..beautiful woman doing amazing and brave things... love to everyone and thank you so much for being there.
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Raehyg, I'm feeling so silly that I just noticed your response to my post when I felt pain that I thought might be from one ovary. You know, I think it was the same nerve pain like I've felt in other parts of my body in the first week after my first infusion. It was gone after a couple days. It was a sharp, stabbing pain, which my doctor attributed to the effect of the taxotere on my nerves. In this case I guess it was the "ovarian plexus nerve."
Your questions were good ones. No, I do have my ovaries, but may talk to my doctor about having them removed when I finish chemo and radiaition, since my tumor was very ER+ but I'm not a good candidate for Tamoxifen according to blood test that shows I couldn't metabolize it. I'm 57, but only peri-menopausal. Here I've been assuming chemo would push me over that edge and it probably will, but of all things, I had a period between my first two infusions and I had just had one the month before. I'd been down to about once every three months. Go figure! With my sixth grandchild on the way in October, I'm ready for the old reproductive system to give up the ghost.
Starynights, I hope you're feeling at least somewhat better by now!
indij1, it sounds like you have a wonderful support system and a great attitude, both of which will help you weather this storm.
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btdemo,
I am having my chemo every other week. The Neulasta is 24 hrs after the Ac and they switched me from the Clariton to Zyrtek which seems to have helped. I am also on Ultram xr 300 mg. that I had for my RA and the oncologist had me resume this and it has been helping. Just slightly achey....but who knows if its from the Ra also so my symptoms can be exasperated. The steroids are for the nausea to hold it at bay and I do not know why they don't wean us off. This last time (I extended it on my own for 1 more day but next time I am going to wean myself properly and see what happens). I have Prednisone for my RA so thats what I am using. I did crash but it was delayed...Day 5 I started to feel it and then today which is day 10 is the first day I am feeling better. It took a little longer but I had 2 cycles so far. Good luck to you.
Rachel
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Seastars I had terrible side effects from the Neulasta. I did skip it after treatment two. So far so good, next treatment is the 19th. Praying I can keep my white counts up. Will know Friday. I also felt funny wearing my wig even though its very pretty. Like a mask...grrrr. More a hat and scarf type.
Angie
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Angie & Seastars, I didn't get a wig because I thought I'd feel about it just the way you do. I figure everyone who knows me knows what my real hair looked like and knows it's gone, so who would I be fooling and why do I care what strangers think? I guess I also worried that a wig might look better than my real hair will when it grows back and that would be a letdown! Of course if I turned out to be one of those rare women who has permanent hair loss from Taxotere I'd make peace with wigs real fast!
Let me tell you gals what I did during my last infusion. I knew Cold Caps were definitely not in my budget. (I did get permanent eyebrows and upper liner done before chemo, so that was my ego indulging splurge.) But I thought to myself, "Ok, Self, so my hair is gone but I wonder if a little do-it-myself scalp cooling on the cheap might help minimize the risk of permanent hair loss or thinning, hmmm." I admit that possibility "wigs" me out a bit - pun intended.
Supposedly it happens to about 3-6% of people treated with Taxotere and I'll be doing six treatments. I have a friend who had chemo for throat cancer several years ago and her hair is still so thin on top you can see her scalp through it.So I have a supply of "turbie twist" terry cloth hair turbans that I soaked, wrung out, and froze in ziplock bags. I took them in a little cooler to my treatment and wrapped them around my head with a shower cap over them. As each one thawed out, my hubby handed me another frozen one. I think the nurse thought I was crazy, but she was a good sport. She says that in decades as a chemo nurse she doesn't know of anyone who had permanent hair loss. But I thought, "Hey, you see people during chemo, not after. Why would anyone come back here a year later just to show you their hair never grew back?!" Anyway, I'm sure my little strategy is nothing close to what Cold Caps accomplish, but it might be better than nothing, and even if it's not, it's easy and makes me feel like I'm doing something.
I'm not really a worrier, but I do like to feel like I'm doing something pro-active, even if I'm only fooling myself. When it came down to it, if my hair didn't grow back, I'd make the best of it and wear the cutest wigs I could find. I have friends whose daughter has alopecia and lost all her hair in her late teens. She is married and lives a full and happy life, so that helps give me some perspective on the hair thing.
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Hi Gailann,
I dont know if your "cold caps" will help, but they cant hurt. I had most of my hair falling out on days 14-16 and then on day 18 I had it buzzed 1/4 ". Since then it has thinned a bit more, but still has not completely gone, nor have my eyebrows or eyelashes.... I have round three on Tuesday, so wondering if will I every be completely bald or just have this last bit of buzz. My underarm hair is not growing, my bikini line is really thin but still some there, and my legs are smooth......
Anyone have any thoughts on IF the rest of my hair will actually go, or will it just start to grow back from here.... I have two more infusions to go..... last one is May 7th
I DID use the Moroccan oil treatment when it was coming out for the scalp pain and it really helped. Otherwise, feeling awesome, not too tired, and going on with life as normal, so I feel very blessed in that respect .
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Ijust had round 2 yesterday, not too bad. I made myself drink 60+ ounces of water, took a while for it to get thru my system (2am 4ma 7am) but will try to do this throught out the next couple of weeks to avoid some SEs. I am half way thru!! I talked to onco re; neupogen instead of neulasta and he agreed. I responded well to Neupogen in hosptial (low white count after round 1). And, it's a lot cheaper (there is no generic version yet). And we talked about dense dosing, every two weeks instead of 3 bkz now I will be taking neupgen. Actually, I like the 3 week rotation, at least the by the third week I feel better. And thank you GailAnn for the reference to the nadir. I brought it up and I'm sure it helped to show I am informed.) And they recalculated my chemo drugs to accommodate my reaction last time. (plus I lost a couple of pounds). I am taking claritin and hope that it reduces any reaction I might have to the neupgen. But the neupogen is not as long lasting as the neulasta so hopefully any bone pain will not be severe. And Melrose: thank you for explaining the doxa. Havent had the crash SE yet but will know to look for it.
I can't thank you all enuf for the info and support. I really do feel more empowered, informed and not as fearful of the unknown.
I got my hair cut very short in anticipation of losing it. I let my salonista play around with it. Then on day 14 I had it shaved. It is day 21 and I still have a 5 oclock shadow?? I'm sure it will rub off in coming days. I originally didn't want a wig either (and only wear hats at home). But I did buy one that looks very similar to the hair style I had. I usually give my salonist free rein with color so it is no unusual to find me with a different color every 6 weeks. So the wig actually looks ok (feels a little weird but looks ok).
GailAnn: can you tell me more about eyebrows? I heard they are the last to come out and I'm not sure what the alternatives are. I have read you can get henna tatoos, or hair eyebrows...not sure what that is all about.
Thank you again all, you have made this process more understandable and bearable. I have a good support network (small bkz I am pretty private) but this forum has reallly helped me thru. Thank you
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I'm going for treatment 4 next Friday. My hair experience is like yours, Milo. Hair started coming out by the fist full on day 14 after first treatment. I had it buzzed it off. I continued to have hair growth (hard stubble) and buzzed again around tx 2 because it hurt and itched. I decided not to buzz around treatment 3 and my head hair is coming back gray (I was gray before and colored to my natural dark brown) but not hard stubble as before, it is softer. Did not have scalp pain since treatment 2 and I moisterize my scalp if it gets itchy. I decided to let it go and see what happens. Eyebrows and lashes are thin but not gone. Bikini hair 75% gone. Leg hair not growing. Arm pit hair growing thinly.
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Hair today, gone tomorrow......
Here is the scoop on the eyebrows & eyelashes- They may wait and fall out after you finish chemo so don't be too surprised it you start to notice that they are getting a little sparse. I had 6 rounds of chemo and the eyebrows started to disappear after the 4th round and shortly after the 6th round, they were very very sparse ( like only a few eyebrows left.) My top eyelashes never fell out but the bottom ones did fall out. They came back fairly rapidly and have not fallen out again. The eyelashes and eyebrows are on a different growth cycle than the head hair and can fall out and grow several times during the first year one is PFC.
I never buzzed or shaved my head after I got the 1 inch boy cut after my 1st chemo round. I had a very thin veil of hair left by the end of 6 rounds and except for a few hairs, those pre-chemo hairs finally fell out. However, beginning around the 4th round of chemo, I noticed I had some new growth. However, that new hair would fall out after the next round of chemo. About 3 weeks after my final chemo, I think my hair follicles decided it was safe to come out since no more chemo was hitting them. I'm 8 months PFC and have a head of hair that is at least 2 inches long. I've been using Nioxin shampoo and conditioner that I found at TJMaxx. I've been extremely lucky in the hair department since it came back straight and in the same color as it was pre-chemo with just a little more gray than I had before. No chemo curls( aka cherub curls) for me.
As for the rest of the body hair, the nose hair, the leg hair and arm hair may still go. My onco had told me that I may still have to shave my legs during chemo. However, that did eventually fall out. As for the hair down south, mine left but has made a return.
Wishing each of you a good restful and minimal side effect weekend!!! You, gals are getting through your time in chemoland.... Keep up the good attitudes and work!!!!!
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