Clinical Trial E5103

cjw

Hi Brenna and all,

It's Carol here, haven't posted for a while due to getting kids ready for school, vacation,work  etc. . I started the taxol a couple weeks ago and MUCH easier than the AC. Virtually no side effects. I did have a mini setback this week that my counts were too low to get my taxol dose. Kind of a pain since I was already at the hospital and wasted 4 hours. But for you ladies still on the AC, it gets way easier on the taxol. My only significant side effect is that I get really winded when I try to run, so I have switched to a walk/run combo. And my taste buds and appetite are gradually returning. Still down about 5-7 pounds, but better than the 10-11 I was down. I haven't had any sleep or nail issues yet, and have been working pretty much a normal schedule (but I only work 3 days a week anyway). Still bald though:)

Thanks for all the postings--really helpful

brena

Hi ladies,

Sorry to be away for a few days as I am at my sisters in Texas and getting a little R & R before returning to work. I have had two of the best nights of sleep in 10 months, refreshing and  an unbelievable feeling. Although last night was another of the toss and turn I will take the two of three nights sleep.

I wasn't sure if I was going to share this with everyone but I have decided to so others do not make the same mistake as I. As everyone knows I have been fighting insomnia since last October and have tried at least 4 different sleep aids of which none worked more than 1-3 days. I started taking my sleeping pills with alcohol out of desperation for sleep. I recently started to see my family Dr. for my insomnia and needless to say he was not very happy with me and I received the lecture about potentially becoming a statistic. I understood the risk when I was mixing the two but was totally desperate for sleep. My doctor is working with me to increase my sleep, he referred to the insomnia as a symptom of "post traumatic syndrome" and the recovery process can take a long time. This is a major and tragic event in our lives and our mind needs time to recover the same as our bodies!

Again, I am sharing this with all of you so you seek help before making the mistake as I did.

not always the wise one,

brena

Carol,

Glad to hear the Taxol is treating you better than the A/C, does make life just a little bit easier. Very pleased to hear you have been able to continue your exercise regimen, not an easy task so my hat/s go off to you! KEEP UP THE DEDICATION.

As for the hair, my Taxol ended in May and I have just enough hair to comb and gel. Not expecting much more growth for quite a while but hope enough to keep my head warm come winter. Carolyn and Teresa sound as if there hair is growing much faster. I did color my fuzz, a little tricky. I had my daughter help me by putting the color on a very fine comb and then placing the comb through my hair so as not to get the color on my scalp. It worked great, did it in golden brown.

When do your kids start back to school? I am sure they are excited and looking forward to it.

Let us know just prior to your un-blinding, should be after your 8th Taxol. May you not have the nail or sleep issues.

sleep well,

harbin

Hi All,

I just had my 1st Taxol last week and it is much easier than AC, so keep my fingers cross for the rest of the course.

I have a question for you ladies who had or started Taxol treatment. Do you get boost automatically for each treatment? I understand that nuelasta cannot be used for the weekly Taxol, but do you get nuepogen for boost? Currently, I am not receiving any boost for Taxol and my onc said I will be monitored and will get a boost only if it's necessary. I wonder if this is a standard for the weekly Taxol. I have a concern that the blood count may drop too low so the treatment has to be delayed. Please let me know what's your situation.

Thank you and hope everyone continue to do well.

brena

Harbin,

Did not receive a "boost" and my counts were always good. Since the visits were weekly it is easier for the Onc to react to a low count or any problem. Eating healthy and mild exercise definitely contributed to my good blood counts. You will still need to stay away from people who are sick as you are still susceptible to getting sick more quickly than others.

How is your sleep habit? and your energy level?

Congratulations on making it through the A/C, the red devil!,

harbin

Hi Brena,

Thank you.  It's good to know you did well without a boost during Taxol treatment. I hope that would be the case for me too. I am doing fairly well. I feel the emergy level is still good that I can do all the things I normally do around house (I am taking off from work during my treatment) and I am able to walk every night for about 45 mins. I do have a sleeping problem. I took Ativan for the first 6-7 nights for each AC I receive. It worked well. But I stopped taking it when I am done with AC, because I am afraid I am going to addict to it. Now I am having trouble to sleep and I think I am now mentally depend on it. I am still trying to see whether I should take some sleeping pill to help me at night or do nothing and hope a good sleeping habit will be assumed after a while. Any suggestion?

brena

Harbin,

I feel like I have been through it all to get sleep so I as many others on this site can relate to your insomnia. I tried to get sleep on my own without drugs but did not work for me, maybe it will work for you.

My Dr. has prescribed Ambien cr but I am not allowed to take it every day, I am to take when absolutely necessary. I could become dependent on the drug and the more frequent I take it the less it will work over an extended period of time. I take two Benadryl tablets on the alternate nights when needed along with 5mg of Lexapro in the morning. I am getting some sleep but am also worried that I still cannot just sleep without drug assistance. Sometimes being weaned from the drug is better than being taken off it abruptly, such as every other night.

Please work with your Onc or family Dr. to come up with a solution you both agree upon. Insufficient sleep does affect the quality of your life, so don't take it lightly...make the Dr. listen and help you!

Please let me know what you decide and how you are getting along,

sftfemme65

Brena,

Well since we are being honest...I too have as you know had a great deal of trouble with sleeping.  Ativan was no longer helping so I started taking lortabs...every single night now to sleep.  I know I shouldn't do this but I like that it knocks me out.  2 nights ago, I woke up at 430am screaming at the top of my lungs.  I jumped out of bed and ran out of the room, screaming.  I was hysterical and terrified.  I kept saying oh god its too fast, please help me its too fast.  I remember only a little of the beginning of it but I do remember everything to be moving so fast and I felt like I was falling into a deep hole.  I was so scared.  I have decided to get some help.  I can't deal with these panic attacks anymore and I cant seem to get a hold of it by myself.  I try not to beat myself up about needing help. 

I hope for better nights for us both.

Teresa

brena

Teresa,

It takes a lot of courage to share what you have and for that I thank you! You have given me comfort and ease to know that I am not alone in my struggle. I also understand there is no quick solution to our problem and that time is outside of our control. I hear our problem be told over and over again by many Cancer patients, and all seem to be given the same two solutions; sleep aids and give it time.

I also fear my sleep pendulum will swing the total opposite direction and all I will want to do is sleep 16/7, not sure what to expect at this point. I do know I want my normal sleep pattern returned and pray the sleep aids will be only temporary. As each week passes I find comfort in getting a little more sleep, not always but feel I am headed in the right direction. Definitely will not return to my insane action of alcohol with pills.

You know what you need to do, please talk with us and I will do the same

sweet dreams,

ryjuem

 This week I've had to face a lot of loss.  I lost my job and will have to move to a new location with new people which means I lose a great support system.  I took my first kid off to college.  My aunt just died last night (breast cancer).  Summer is over and school will be starting soon.  I hate that every time I go for treatment and see the doctor and talk about some nasty side effect or ailment I'm given a new drug. 

I'm going to try to change my eating and eat only really healthy foods.  Why don't the doctors help you with nutrition instead of just giving more and more drugs? 

Anyone have a sore tongue that is really tender and kind of discolored on the sides?

S3K5

Ryjuem,

I am sorry about your loss. Did you start a new job or a new group?  I know it is hard to send kids to college - I have one in college too (Junior). They grow up so fast and are on their own in no time. Sorry about your aunt.. it must be hard for you.

Doctors are not nutrition specialist but I saw a dietician. She helped me choose my foods but with no taste buds and sensitive mouth, there are only so many things I can eat! I am a vegetarian - only fruits, veges, grains and milk products.

 For my sore tongue, I have been given something called a 'magic mouth wash' - a mixture of Lidocaine,Benedryl and maalox(?). It is a prescription solution and helps when the mouth is very sensitive. I have had discolored tongue since I started AC in May. No taste buds at all - every thing tastes bland or it burns! Hopefully, in 7 weeks (after Taxol) it should get better.

Hang in there - we are all going thru the same or similar SEs. It will be over soon.

Desi.

carolynf

Happy sunny day to all,

I was just catching up on all the posts and realized that we are all going thru so much at one time or another that its amazing we keep going. Ryjuem,  sending hugs your way.  Listen to Desi on the tongue thing.  That would be one less item on your plate.  The taste buds do come back!

Brena/Teresa,  I am still taking lorazapam to sleep at night. I have tried to back it off to 1 at night but still wake up.  I don't know if i am getting immune to the drug or what.  Some nights it seems to work but still takes a while before it kicks in.  Might have to talk to my onc on Tuesday.  I went for my annual mammo yesterday.  After the smashing of my breast I got a really sharp shooting pain thru my nipple and then it went away.  She couldn't get close to the lymphnodes on the left because of my port.  While i was changing back into my top i started getting weepy.  When I left I was in tears!  Talk about hormones....my husband couldn't understand why it made me cry.  I know it was in the back of my head that last year at this time I had my mammo and the next month i was going thru MRI's, biopsy and surgery.  I am fine today but a little fatigued.  I've almost made it thru work. One more hour to go.  I hope to get some exercise in today. Have either of you had a mammo since the start of bc?  

It sounds like the rest of you are doing great through your treatments.  It's amazing how time flys when you are counting down the days til the next treatment is over.  Well, got to run as usual.

Cheers,

Carolyn 

cjw

All

It sounds like it has been a tough week for a few and that insomnia appears to be a common side effect. I had a little setback last week when I went for my 3rd Taxol--my counts were too low for treatment. I was in shock as I otherwise feel entirely healthy. I asked the nurse and she said they typically do not give any shots for the weekly taxol. I will see the onc. tomorrow when I go for treatmetn (hopefully counts have recovered) and will ask about getting shots.

I did have a little of the sore mouth on the AC --that solution recommneded above helps. It eventually goes away but its tough cause nothing at all tastes good. Try a little plain ice cream-the cold helps.

take care all.

carol

sftfemme65

Carolyn,

I had a breast MRI in march, 3 months after my surgery.  My onc on monday said I need a mammo in sept.  I am really not comfortable with that.  My mammo which was done 3 months before I was diagnosed missed my cancer.  I may push the issue, I really want a MRI not a mammo, but I don't know. 

Teresa

cjw

Help! Need some info.

I am on my 3rd round of taxol and have had it delayed twice now (2nd week in a row no chemo) due to my neutraphils being too low.

--Has anyone else had this happen?

--Is anyone else getting shots during the taxol (I did during the AC)

My onc. thinks it is because I am pretty small and perhaps the dose was too much for me.

Any input appreciated.

thanks, carol

brena

Ladies,

Much to talk about, forgive me for not writing tonight. I feel tired and lousy, yes me and tired in the same sentence (cross fingers for sleep.) I will be back on tomorrow as I am off for the long weekend.

I am reading and thinking but just can't get the thoughts,

cjw

Brena

Hang in there-you have been such a rock on this board. Hopefully you will get a good nights sleep. At least there is a 3 day weekend. You can always watch the convention if you really get stuck:)

carol

carolynf

Carol,

My counts were low but not that low. I never missed a treatment.  Try eating some salmon this week to get some omega 3 oils in your body might help.  There's really no way to up the wbc like the rbc.  I did eat a lot of spinach salads and eggs.  Eggs seemed to help w/staying strong.  Good luck for the next treatment.

Brena,

I hear ya! I didn't make it to work today. I slept til noon. Got up and ate something and had a wicked headache/sinuis ache.  My nose is still running and I think the ragweed is aggravating it more. So I took something for my sinuis and went to bed.  When I woke up at 4:15 my headache was gone!  Still feeling the tired effect.  I did get my son to soccer practice and finally went food shopping.  No soccer this weekend.  Not sure what I will do w/myself.  Get some rest and will catch up w/you later.

 Teresa,

I agree w/you that an MRI is much better than a mammogram.  I had a digital mammo this time.  What a big difference in how the picture comes out!  I still feel that your hand is the best way to find anything.  My only problem since my lumpectomy is that I have a differnt feel to that breast because it is missing tissue.  The mashing down on my breast is tolerable. I was a little uncomfortable when she did the first one next to the port but she was real careful not to pull there.  Tuesday my onc is going to do a breast exam so he can get a feel. I don't know if you still have a runny nose but mine is still here.  I think the air conditioner at work doesn't help at all.

Ryjeum,

I hope things are going better for you.  Am sending hugs your way.

Desi,

Sounds like you are staying strong.  When is your last taxol?   You must be counting down.

Take care all,

Carolyn

harbin

Hi Carol,

 I just had my 2nd taxol (I am on weekly taxol) yeterday. I did not get any shot on my 1st one. Before the 2nd taxol, I got my blood test result and both Neut  (1,41) and hematocrit  (22.7) are too low. Dr. had to give me blood tranfusion right away. Today, I had boost shot for neupogen and will be getting it for next two days. So starting now on, I will get neupogen for 3 days after each taxol treatment. Did your doctor mentioned about giving you neupogen? You may ask him about it.

 Harbin

harbin

Brena,

 Thank you for reply on my sleep problem. I tried hard to fall sleep without any medicine assistance in last two weeks and have made some improvement. I tried to read magazine on bad which will put me to sleep, but I do wake up several times in the middle of night and stay up for a while before I fall back to sleep. I think I now get 5-6 hours sleep which is pretty good. Hope the situation is getting better since I am in Taxol which is much easy to tolerate.

Hope you can catch up your sleep for this long weekend.

Harbin

brena

Harbin,

Thanks for your good thoughts and concern. I am sorry to hear your having to go through a blood transfusion because of such low counts. I  did not experience such problems with my counts but I also ate many spinach salads, fish, vegtables and eggs (protein) as Carolyn mentioned. If you can try the foods Carolyn mentioned see if it helps. I realize A/C can decrease appetite and with lack of sleep we can get run down and every germ sets-up shop in our body. I am glad to hear your able to get a few hours of sleep it sounds like you definitely need it.

Have you been feeling run down or sick? Are you giving yourself the Neupogen shots?

Hold on and please drop us a line and let us know how your next round of Taxol is received.

sleep well,

brena

Carol,

It seems you and Harbin are having the same set-back, did your Dr. recalculate your Taxol dosage? I know I missed Taxol round 4 or 5 dosage due to my weight loss and SE's, was the only missed round. It is important for your body to recover from each round before getting the next. I was very frustrated and disappointed in just missing the one dosage, I was more disappointed in myself as if I did something wrong to cause the delay. Obviously I did nothing wrong I just wanted to keep moving forward.

I did not get Neupogen shots during the Taxol but there were days I knew my counts had to of been low due to my SE's and almost passing out a few times. By the time I returned to the Onc office my counts were good so I never said anything about it. Did your Onc give you any suggestions to improve?I have read on these boards where woman were eating and exercising but still dealt with low counts and setbacks. I have never heard of any concrete evidence showing what causes the low counts.

Watch the convention, boy oh boy that would put me into a coma!! 

a huge hug and good thoughts for your next round,

As with Harbin, how is your eating habit? keeping food down?

brena

Carolyn,

You are correct on the allergy contributing toward being tired, symptoms hit me once I flew back into Philadelphia. I took benadryl last night and slept pretty good, even layed in bed this morning. Did not sleep but layed in bed with a groggy hang-over feeling and felt like that most of the day. I am eating Halloween Oreo cookies and on my 8th one, been a long time since I had one. I wish they made them with green filling so maybe I could convince myself they are in the vegetable family. I will ride a few extra miles tomorrow to justify eating the cookies tonight.

Anyway, I am due for my annual Mammo this month, Aug. The Onc and me discussed my getting a Mammo at my July appointment and I felt my breast was to sore to get one. We were suppose to discuss it again at yesterday's visit and he did not bring it up and I sure was not! I don't plan on getting one for another few months assuming my breast feels good enough to be pressed between two metal plates. Prior Mammo's were always painful. I totally forgot about the port being an issue, will keep that in mind unless I get it removed before getting the Mammo.

A few months ago I found a small lump deep in my opposite breast that I had BC. The Onc and Gyno felt the lump and thought it was a cyst, but the lump is still there maybe a little bigger. I have to move a lot of breast tissue to find the lump. I have not readdressed this with either Doc but will probably ask to get an ultrasound if the lump is seen when I have the Mammo. My Gyno gave me the same answer (cyst) about the lump with BC so her recent diagnosis was not reassuring. The only lump I have ever felt or was seen turned out to be BC, go figure. Talk about odds I wish I was that lucky at the lottery Excluding my Onc appointments my goal for the rest of the year is to NOT be pocked, squeezed, jabbed, sliced, diced etc. in any manner unless my life depends on it being done. A Mammo happens to fall into the "squeezed" category and I think a few months longer would not make a difference in any manner.

The breast that was radiated is sore inside but looks damn good even my lumpectomy and SNode scar are almost invisible. I think the burn cream that I used actually helped heel the scars, they did not look that good before radiation. I thought the rads would slow down the healing process and probably did, again I think the cream helped. In a few months maybe the scars won't be visible?

I may consider getting my port removed in December because I start my 3 month visits (for 3yrs) with the Onc in December (due to Bisphosphonate trial.) Getting the port flushed at required intervals then becomes a concern but getting the port removed also falls into the category of "slice and dice" so I may wait until around Xmas, depends on the timing of my last blood draw from the port.

I am on my 10th cookie...........someone STOP ME!!

I start back to work next Tuesday and will work 4hr days for two weeks and then jump in for the entire day. Will be glad to get back to a normal routine, I did stop in work a few times to keep in touch with what was going on and checked my emails so I shouldn't be to far behind.

My oh my I have written a book and have not even covered all topics, can you tell I ate to many cookies...time to move on.

sftfemme65

LOL Brena your cracking me up.  I'm eating oreo's too.  the ones that are vanilla cookie with choc frosting inside....ummmm yummy.  Its hard to stop eating them .  No wonder I gained another 2 pounds!

brena

Teresa,

Explain to your Doc the reason for wanting an MRI and I hope he would understand and support you on your request. You must feel confident in the performance and result of your test. Did your last Mammo show a lump but missed by the technician or the lump was not visible on the Mammo? How was your follow-up visit with the Doc concerning your insomnia?

Summer is almost over and I hope your enjoying swimming in your pool. I have not been to the beach once this summer, may consider going for the day in September.

I have not tried the choc oreo but will put on my list to try.

sleep well lady,

brena

Ryjuem,

Not sure how your keeping it together, your times are tough. I know you can and will get through your challenges as I have read through your old posts and know your a fighter and persistent. Keep moving forward one day at a time, you can and will get there. Please accept my deepest sympathy for the loss of your aunt, words cannot express or comfort how you must feel. If you feel like sharing her story I would love to hear it?

Have you done any job hunting or taking some time off to focus on your health? Is your child attending a college in your state or afar? Having a child leave for college I am sure is just adding more emotions to your current situation, I hope keeping in touch with your child will ease some of your worries. Is your child excited about attending college? what is their major and college?

I and most of the woman can relate to your statement about "another drug" for each ailment. I feel like that when it comes to sleeping pills and my insomnia. I must admit that during my entire treatment I only received Nexium. I did try several home remedies for a rash that I developed on my arms but told by Onc to rub cortisone but it did not work. Come to think of it I was on antibiotics for 47 out of 60 days for several different infections. To sum it up, I was given Nexium and antibiotics for the duration.

What drugs have you been given and for what SE's? I would like to have a better understanding of what SE's you are getting. Do you feel you need meds for each of those symptoms or Onc feels it is necessary?

Eating healthy and exercising will always help but not always easy to do. I commend you for trying and I know it will help. (Disregard my (and Teresa) earlier post about eating Oreo cookies...not setting the best example.)

I did not experience a sore tongue, discoloration or mouth sores. Can't help you with this one, did your Onc have any recommendation or what is causing it?

Please let us know how your job hunting goes and how your child is making out at college, it is a big step and I am sure you are very proud of there effort and courage.

understanding why we must make the journey is not always visible,

brena

Jen,

Would be great to hear from you, what is going and how are you feeling?

hope all is well 

brena

Desi,

How is it going? you should be unblinded pretty soon, correct? Are the anti-nausea drugs still helping?

cheers to you,

harbin

Brena and Carol,

I also wonder what may cause the blood count drop so low in my case. My apetite has been very good during the entire chemo so far and I am able to eat almost everything as normal. My energy level is good and I take 45 min walk almost everyday. Even when my count dropped, I really don't feel it and I feel pretty good. I really do not like the blood transfusion, but my doctor does not want to wait and want to fix it right away. He thinks it's important to continue the treatment. It looks like no one in this group has to do the blood transfusion during the treatment. I hope I don't have to do it again. I will definitely try the food you suggested. 

Right now, I am going to clinic (about 20 min drive) to get the nuepogen shot. The nurse mentioned that I can do it myself at home. I may consider it to save lots of drive.

Hope you alll have great weekend,

Harbin

S3K5

Hi Ladies,

Just an update - finished my 6th Taxol yesterday with lots of pre-meds. Feel a little tired and nauseated today - but not too bad.

Brena, thanks for asking - Yes, anti-nausea medicines helps on day 2 and 3. Then I need only advil/tylenol combo for my bone and muscle pain. Last week my Onco prescribed Prednisone (20 mg/day) for three days and I was so depressed - I cried for the first time since my diagnosis in March 2008!! So I am not taking it any more!! Not worth it!! I will be unblinded on Sept 26th (eighth cycle) but with the profuse nose bleeds, I am guessing I may be getting Avastin (but I may be wrong!). Another question - you did so well during Chemo but had to take time off work during the radiation, right? Was it due to fatigue? I am hoping to get back to work during rads, but I don't know what to expect.

Harbin, sorry about the blood transfusion, but that may be the thing to help immediately. I got a shot of Arnasep for my RBC and Hemoglobin (it was dropping). After my 5th Taxol, my WBC dropped a little lower this time but neutrophils were borderline. The nurse told me to eat more protein and take vitamin B6,B12 and folate. I don't know if this helps but it couldn't hurt. I am a vegetarian, so getting protein is a challenge.

Carol,there is nothing we can do with WBCs and Neutrophils. My onco said 'take a lot of fluids and rest - don't step out in crowded places, if you don't need to'. She hasn't released me to go to work (even part time) because my counts have been on the low side since DD AC (I was in the hospital for 4 days). I am taking her advice and so far so good! Like everyone else, I don't want to skip any treatments and want to GET IT OVER WITH !! I hope you will go thru' the rest of the treatments with minimum SEs.

Take care everyone,

Desi.