Taxotere, Carboplatin and Herceptin
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Good morning to all!
Noni - Welcome to our little group. I am sorry you had a need to join us, but you find some good friends and good advice here.
Cupcake - I think your "problem" is absolutely hormonal. Why don't you ask for a referral to an endrocrinologist? - preferrably a female. Between the chemo and the need to avoid anything estrogen based, your gyno and onc may be out of their realm.
Bluedasher - My doc did a complete boold panel last week and the only thing off was the potassium - However, I have since read that if the postassium low, potassium needs to be given with magnesium. I was not able to take the postassium pils, they made me sick and constipated. I go in this morning for another blood workup. I will talk to the doc about the potassium pills.
Smile and others - That bad taste is not fun! I described as "A mouth full of metal shavings that have been dredged thru the NY Sewer System"
Bold - Your garden sounds wonderful. What a peaceful place to retreat too! And yes the tears! I have cried more since my last tx than I did through out this entire ordeal! I fiind myself crying over every thing, good or bad
Yesterday Hubby and I spent the day riding together, just the two of us. Normally there is a large group, but we snuck off to a state park alone - it was great. The temp was 80 with a light breeze and big fluffy clouds. We need to sneak off like that more often! Hubby does not ride as much as I do and I need to get him in shape for longer rides. Next month we are sneaking off for a week in the Ocala National Forest. We have rented a little cabin with a little barn that will also let us bring our dogs. I am really looking forward to that.
Gotta talk to the doc this morning about Tamoxifen. So far, me and that little white pill are not friends. The night flashes are horrendous! I though chemo hot flashes were bad! Those were nothing compared to tamoxifen flashes. I was up all night! Had the air cranked down to 60 - when I wasn't flashing, I was freezing!!
Time to get up and start the day. Have a great one ya'll!
Lisa
PS: I can't wait until I have enough hair for it to show up in picture!
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Mornin All-
Oh, am I ever JEALOUS of you girls living among the warm sunshine! I'm thinking it HAS to be a MAJOR mind lifting advantage for dealing with our sorrowful moments. A beautiful California Zen garden? Oh Bold, so awesome! I love working on my garden and have always found it therapeutic- even with my not so great hand issues. And Lisa, I'm not a horse person. Not because I wouldn't enjoy it. I have ridden but there's never been an opportunity to incorporate it into my lifestyle. A private ride with my love in the warm sunshine sounds like a dream afternoon for me. A cabin in a national park? As likely for me as winning the lottery! So girls, keep in mind that it's damp, rainy and windy here in NY. It's that time of year where I always feel impatient and I know my spirit needs to do those warm sunshine activities. Even no activity but warm sunshine will work!
I have a little less than 2 years to go where if I leave my current job, I will take their benefit package with me until Medicare kicks in. My plan is to move somewhere warmer for sure. Leaving my daughters wouldn't be easy then, I think my oldest would push up having her first baby to keep me here!
Lisa- I know we are all sick of drugs and pills. I had a year of not fun hot flashing before dx.(Never took hormones) I couldn't sleep at all after surgery because of it. Onc. put my on 75mg Effexor and after 5 or 6 weeks, I am absolutely AMAZED at the difference. On the rare occassion that I do get them, it's nothing compared to that awful sweat producing heat I used to have. Just thought I'd mention that. If you can't take it anymore, it may be a consideration for you. I sleep like a baby now with no sleep aides at all.
Well, I must get in the shower to put in a few hours of work today. I did all my work from home last week. This is my off chemo week so I have to show my face.
Wishing you all many blessings today.
Ellen
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I am getting ready for Treatment 3 on Monday and I was wondering if anyone kept "some" of their hair during treatment ?? My head looks like a joke. I have 2 spots the size of an eraser of black hair (I am a blond) on the top of my head, along with some blonde on the rest with black batches thrown in. My husband keeps offering to shave it but I think that I am stopping with the clippers.
Besides that I am getting rid of the flu and my port is fine (they where worried about bacteria). So I am all systems go for next Monday treatment #3 and the halfway point.
Anything good for mouth sores ?? I got Magic mouthwash and its okay but I was wondering if there is anything better.
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Hi Jaimieh.... My hair was hurting my scalp sooo bad I went ahead and had it shaved off. Feels much better now. Mouth sores....Mylanta and Benadryl ...mix a teaspoon of each and rinse.... I did that the first go around and this time I am using Biotene toothpaste....mouthwash.....and rinsing with Baking soda and salt. Anything to keep them away. Hope that helps. The Mylanta and Benadryl helps with the pain....if you already have them. I have just completed number 2 and I have had a hard time with this one.
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Jaimieh: I still have some hair too. It is not the hair that I once knew. I was blond its salt and pepper. (yuck) It is also in tiny patches and is certainly not something that I would wear so I did shave it. It felt so much better that way. I shave it once a week. I want it to grow in evenly when the times comes. (are we there yet?) Number 3 CONGRATS! that is a great accomplishment. half way to perfect health. cool. I am only one ahead of you. I had #4 last Monday and I am back to my fatigued, eye twitching, sore, diarrhea self. Yippie. Only 2 to go for me. About the mouth sores first I would ask your nurse if you can suck on ice during the taxotere phase of chemo. I have done this and have not gotten any sores. Not to say that it does not feel like I burned it some times. Next I brush my teeth first with a Little salt and backing soda. I was also given a prescription for CHLORHEXIDINE. I have not had to use it but I keep it on hand. It must be horrible to have sores. I hope that you feel better very soon.
Rezok: Warm weather is on the way. Before you know it you will be watching the rebirth of you and your beautiful State. Try to take drives and get out to see things it helps with cabin fever. I lived in Evanston Illinois (first town north of the Chicago.) I was working at Second City as a comedian. I remember there were 2 seasons there Winter and Construction. Holding a warm thought for you.
As far as hormone blockers I have not decided if I am going to take them or not. I would like to ask as many of you that know. WHAT IS YOUR % OF ESTROGEN ON PATH REPORT? AND WHAT IS YOUR ESTRADOIL IN YOU CHEMISTRY? I had only 2% receptors in the tumor and 32.3 Estradoil. FSH 61.9. I understand that after chemo this maybe even further depleted. I hope so. Thanks for any response.
Lisa: I am so happy for you. I have not been able to get my DH on a horse. He like mountain biking and he is leaving me to go skiing. I hope he has a great time. I want him to get away from all this and renew him self. He has gained abit of weight since my DX, (Stress eating) So he has to gear up for a big diet after Rads. Can not wait to see your new pic.
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Blue: I clicked on it but it didn't come up. What was the name of it and I will try and find it? Interested in seeing it.
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NonniO,
What trial are you on with the TCH plus Avastin (bevacixumab)?
I searched high and low for trials testing additions like this to TCH (such as Zometa/zoledronic acid, Tykerb/lapatinab, Omnitarg/pertuzumab, Tarceva/erlotinib) for adjuvant treatment. All of these are either monoclonal antibodies, small molecule biologicals, or established non-chemo meds that have proven effective in metastaic BC.
I found it extremely time consuming / inefficient trying to research these trials and finally gave up. I signed up with a trial matching service (U of Penn) and they didn't surface anything like this.
I am concerned that once I start TCH chemo (tomorrow) that I will no longer be eligible for any trials like this, given the exclusion criteria. We have no Cancer Centers here in Georgia, and my onco doesn't seem to participate in trials, although she is excellent nonetheless.
Any suggestions?
E
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Cupcake, the name of the thread is: The "fun" side effect of vaginal dryness with AIs
It is in the Hormonal Therapy forum and is currently on the first page. I hope it helps.
There is also a much older 77 page thread titled "I want my MOJO back" There is a link to it in the other thread.
You might ask: why is a hormone negative person like bluedasher reading the Hormonal Therapy forum? I've signed up for the bisphosphonate trial SWOG S0307 and there are discussions of it on that forum since those drugs were first given to hormone positive women to counteract the bone loss issues of hormanal treatment. Now they think bisphosphonate may reduce BC recurrence regardless of hormone status and the trial is open to hormone negative women.
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Jaimieh, I also sucked on ice chips during the Taxotere infusion and didn't get mouth sores (except one very minor cold sore once like I might get while not on chemo). I don't know if the ice chips helped or if I just lucked out, but it couldn't hurt to try.
I lost almost all my hair. Maybe 5 to 10% stayed on. Mine wasn't in patches - just random hairs all over my head. It looked demented so first my son clipped it very short with scissors and later he buzzed it as short as the buzzer would allow. Those hairs seem to have grown a little during chemo so the are about 1/4 inch long.
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I'm really disappointed in how much strength I've lost during chemo. I think it mostly happened because my RBC was so low much of the time that it was hard to get out and be active. Then the last two Tx, I had a lot of trouble eating so maybe I lost some muscle to that.
I'm on a business trip this week. One of the flights was on a small plane that didn't use the jetway. Usually I pride myself on always being able to handle my own luggage, but I looked at the stairs and decided that I couldn't trust my strength carrying my backpack and roll aboard down those stairs. I had to ask the gate agent to have someone carry my roll aboard. Then going up the 5 steps into the plane with just the extra 20 to 25 pounds of my backpack on my back was a struggle. Fortunately at the other end they had a ramp rather than steps up to the terminal and I was able to get my luggage up that.
I'm worried about how long it will take to get back into normal condition.
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bluedasher...I was just sitting here thinking the same thing...actually lying here. I have not been able to get out of bed today! I know....(at least what I am telling myself) that my strength will come back and if not the same better. But it is depressing until then. It is okay to ask for help when help is needed. Dont worry about the time...just concentrate on today! Then everyday will be better and better and stronger!
I would go nuts withouth this site...thank you all for being here...even though it is on bad pretenses...none the less....THANK YOU!
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Oh about my hair I did shave it with clippers but the stubble that is left is in a funky patter. I gotta take a picture.
I stopped by my dentist and he gave me an RX for the cold sore he thinks it is a fungus (ewweee) but he said the med. should clear it up really quickly.0 -
Bluedasher: I take fish oil and co Q 10. This is to help not loose muscle strength during chemo. I get fatigued but still strong as a horse. I do get short of breath very quickly. Thinking of you hoping you and Smile will be back at it real soon.
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After chemo #2 last Thursday, I crashed on Sunday, and I mean crashed! Felt awful and didn't get out of bed. My daughter came over and helped me by fixing a *little* something to eat. I couldn't get out of bed today--less achey, but still NO energy.
Shari: you've become my meter! We started the same day If you had a hard day today too, I know it's not just me!
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Blue I am going in now to check it out thank you. I just wanted to comment on the fatigue you guys are having. It is the part of chemo, outside of nausea, that is the worst, and it will take 6 months to be completely normal again. I did, however, begin to feel I had most of it back within the third month, that was until I started rads, but that tiredness is NOTHING at all like chemo tired. Your body is taking hard hits and it is trying to recover from each round you are taking and the last thing your gonna get is your strength as your body repairs each time. Just know you WILL have it back when you are done with this. Just be patient and wait it out. Take care of yourself by resting. Give yourself permission to do so. Your body will thank you.
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denali...I am just now starting to feel like myself again. But I think part of that is the new naseau Med the Onc. called in for me. I have been very fatigued with #2 as well. I stayed home today in bed.....my daughter came over for a bit...its so nice to see her. I live with my ex and my son...but they were at work all day. She works part time, so she can come see me at odd hours. I have found that the key is eating. Try to keep crackers, saltines or just something to munch on beside you at all times.....that has helped me. Hope you have a better evening and day tomorrow!
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I do have a question....as you know I shaved my head last week. The past two days my scalp has been sensitive. I am not sure if it is the stubble that is still there, but when my buff goes against the hair growth it feels as if it is pulling my hair...same when I sleep without one. Should I shave it all off....or just keep it buzzed close. My DH is nervous about this and asked me to ask. Any body have any suggestions????
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Wow! Busy day!
Smile - the hurting head is temporary - just a few weeks. No need to keep buzzing, Just leave the head alone for now. The chemo will stunt the growth of what hair you have left. When your TX is over, you may want to do a light buzz to even things up for the new growth.
Bold - Stress weight gain is a very real thing in MY house!!!! I am sure you are not up to a biking trip, but a nice power walk around the neigborhood with you and hubby would be just great! Keep (cardio) moving as best you can.
RekOz- Our weather has been great these past few days. We have had an unusually cold winter. Yesterday out with hubby was a true treat - a day that will forever be cherished. Good weather is heading you way soon! I have a good freind in Connecticut and she says this winter has been the worst in - forever! Hang in there!
Blue - the muscle loss has been my biggest "personal" issue. Before BC, I was 5'2" of rough and tumble, I out worked (physically) most men my age. Today I can barely sling a 60 pound bale of hay 3 feet. I have to tug and heave use my knee to boost it. Sad. I am 20 pounds over weight and I look like crap. This needs to end.... As soon as my blood work gets back to normal, I am in serious diet/workout mode!
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Shari, I had the same problem with my hair after I had it buzzed really close. After a week or so I finally took my husband's electric razor and shaved, and it feels much better now. It's still itchy at times, and I am wondering if anyone suggests moisturizers for you head? I have treatment #3 on Wednesday, and I'll be glad to be 1/2 way through.
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duneoaks - This best advice I have is I NEVER stopped washing my "hair". Other than the horse shampoo, I continued to use salon quality products. I never got itichy head - I got itchy body!!!! Itchy body I treated with Aveeno Oatmeal Bath - every night! Did wonders!
Lisa
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Blue: Very good sights. I learned a lot. Another one off from that was the Armidex one and the numbness I have been having on my pinky and ring finger is also attributed to the drug, along with the joint pain I have been having. I really don't think I am going to continue taking it. To me it is a quality of life and taking that stuff that causes so many S.E.'s is to much, and I don't want to live that way. From what I understand the nerve damage is permanent. Why didn't anyone tell me of these S.e.'s before I started taking it?0
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I continue to laugh over the fact that I am very carefully following advice of wise and wonderful women who are pushing horse shampoo--and the cheap stuff at that. I've done just about everything else suggested on this site, so I guess that's next.
Hair comment: I have short little fluffy tufts--kind of maniacal looking, but I could not bear to do the buzz thing. The itching has past for now at least. I appreciate the suggestion about evening it out when it starts to grow again and am sure looking forward to that day. I was told by my nurse practitioner to keep shampooing with mild shampoo all thru chemo,even if hairless.
Nausea comment: I, too, have not had nausea for the first two rounds. Tx 3 Wednesday (along with duneoaks). I am given steroids (Decadron). Ativan, Aloxi in my IV just before chemo starts which is supposed to be long-acting, IV hydration (2 liters) the day after chemo, and am sent home with Compazine, which I have not had to use. Have been drinking a half gallon of water a day, as directed. I think all the fluids, both IV and by mouth have helped reduce the metallic taste.
Also, I was told to rinse mouth with baking soda and warm water at least 4 times a day to prevent mouth sores. So far, no mouth sores, but I don't know if that is the reason.
Cupcake and Lisa: Great to have you around. And, Cupcake, you are looking way cute.
Duneoaks: We are approaching half way! By this time next week we will be on an upswing. Got my wig refitted last Friday. After much sewing and cutting, it actually fits and feels better and I can wear it for many hours without thinking about it.
It snowed here in Boston again today, so Bold and all you campers who live in warmer climates, please do keep describing all your buds and blooms and sweet scents to us northerners. And, keep enjoying.
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Cupcake: I was complaining to my onc yesterday about the SE's of the tamoxifen. He wants me to tough it out for another two weeks and see if the se's subside. He said my alternative is arimedex and that has even more se's. And if I do arimidex, I have to get shots that essentially kill the ovaries. I don't care about ovary murder - have no need for the things. But I don't want yet ANOTHER chemical pumped into my body, so I aggreed to give the tamoxifen some time.
Sailor, good for you to be drinking 1/2 gallon of water a day - no way could I have gotten that much down on tx week. You will be so much better off for it. Keep up the good work. You and duneoaks are coming up on #3 - Yippee!!!!!! Halfway is a great feeling!
Hang in there northerners - winter has to end eventually!
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Thanks Sailor. Aloxi is the stuff they gave me to, but when I started Emend or was it Amend. Whatever it worked so well I never had any nausea again...I mean nothing. So move the nausea drugs around until you find the right one for you. Compazine is just a sedative and didn't help at all, just put me to sleep. Your good intake of water is good as being dehydrated causes nausea too. Lisa what are the S.E.'s of the Tamoxifen...oh never mind I can't take it anyway. I think that is for the women who have all the plumbing and I don't anymore. That is why the Arimidex is used for us old gals that don't have their woman stuff working anymore. Their is not enough good effects of the Arimidex to out way the bad S.E.'s for me to convince me to take it. I will just have to be very diligent in check up's to make sure any cancer that may come back is caught in an early stage.
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Cupcake- Could you clarify for me what you mean by plumbing? Do you mean the actual "pipes" or the working order of said pipes?
I won't begin the estogen pill phase until after chemo but up until recently, I had thought nothing of it. NOW....ahem, the reality of se's is quite clear. I was dx's exactly one year to the month of my last period. Thought that made me post meno but apparently not. My tumor was 90% ER and PR pos. Now I see all these Oomph posts and wonder if that would be prudent for me. My Mom is on tamox (dx 3 years ago at age 77) and does well enough with it that she does not want to change. I think Femara might have been mentioned to me early on from one of the Docs. I am with you 100% in terms of quality of life. I already have bilateral carpal and hand issues. And I certainly don't want anything that's going to cause me to further dry out and wrinkle inside and out, let alone bone pain etc...GAAA!
Trying not to stress about it too much until I get there but now that I am informed, I will have MUCH to discuss when I get there.
XO Ellen
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Cupcake: Yes, I mentioned the regimen with Aloxi, Emend (yes, it with an E), and Ativan that I am on because I have had NO nausea at all--not even queasy-- for the first two treatment rounds. I am hopeful it will work as well for the remainder and am feeling glad they got it right the first try. When you said your experience was the same, I thought other folks should know that it has worked so well for at least two of us. Also, as a 60 year old, I am facing Arimidex after radiation, so it is really helpful to hear what you are learning and have to say about these things. I was so focussed on dealing with chemo, that I didn't really think much about what is in the future, but now is as good time to start, especially with such good guidance.
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Ellen and Sailor: Sorry I use metaphors to much. I am post menopausal and had a hysterectomy so no more pipes meaning everything was taken out. Amiridex is used for us ER gals, but the S.E.'s I looked up are Vaginal Dryness..yep big time on that one. Bone Pain...yep..Carpal Tunnel Syndrome..yep..Weight Gain..for sure....Heart Disease..have problems with Cholesterol now and this could make it go higher...Sleep Problems..don't know if it is this or just me...Body Swelling..I looked like a puffer fish so yep on that one too. Other things was edema, anaphylaxisis, urticaria, angioedema, asthenia, vasodilation, arthralgia, leukorrhea...don't ask I just wrote them down, but have no idea what they are. Sailor I am 63 so right with you. Glad you found your right combo on nausea meds. Once you find them they will work the rest of the time so you should be ok. Arimidex might not be a problem for you, but if you notice these above things I would certainly have a little chat with your onc. Don't stress about it now, you have to finish your stage your in, but just tuck this info away in your head for the future. I will keep you posted as I am seeing my onc in a couple of weeks when I am done with this radiation and we will have that little chat too.
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Cupcake: I ask you this before but what is your % of estradoil. I do not remember if you had a tumor biopsy done. If you did could you please tell me the estrogen %. I have taken this situation pretty seriously myself. This might be a little sensitive but. How much over weight are you? If you can take some of your legendary fight and loose weight you can lower your estrogen levels substantially. This is something that I have to do too. I do not want to take Amiridex. I want to control my hormone levels as much as I can. I only had 2% receptors in path. Being over weight causes a rise in estrogen. Thought I would throw that in the mix. You can ask you onc. opinion on this too. Some times the hardest part of the journey are the tings that we do for ourselves rather than our doctors doing it to us. Blah Blah Sorry.
I have been having some real fatigue and diarrhea issues. I am also having problems stilling myself at night. I can't get any real recuperative sleep. I am changing and my mind is having a hard time keeping up with everything. Plus I have been having lower back pain and shooting pain in my toes. weird.. I wonder if it can still be the Nurlasta 8 days after treatment.?????? Anybody else have this?
Heavy thoughts.
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Er +98, PR +74, HER2+, Age 45, pre-menapausal - Tamoxifen sucks!!! Hot flashes, not sleep, puffer fish face, water retention and I have onely had 5 doses!!!!!!!!!!!!!!!
Chemo did put me in chemo-pause, but I don't know if that lasts or not.
All "plumbing" in-tact.
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So today has been another day spent at home! I was sick this morning...my body couldnt seem to makes its mind up...sitting or hovering over the toilet. I think my problem has been me not eating.....everything tastes sooo bad and makes me fill nauseous so I just soon not eat. But...as of now I am feeling better. Made myself eat today.
My fingers look dried up prunes flaking. I have been using Aquafor wth gloves at night and several times during the day. I just switched to Utter Cream....any suggestions...they are starting to hurt now. My skin is drying out all over. My face has never been this dry in my life. I am not an oily person...but my face is flaking too.
To change the subject for a moment....I have reading alot of other threads on this site and I am amazed at some of them. I have read where people have been on since 07 and have continued their relationships, but when someone new comes on...they are re-directed to another thread. So thank you ladies that come back from the past with your support and welcome! None of us want to be here...but it is nice to have others to talk to who have been and are going through this terrible time.
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