Clinical Trial E5103

cjw

Dear all

Thanks for the feedback on counts. Harbin--I am interested to know you got shots and a blood transfusion. My neutrophils were .92 and .77 the last few weeks (not sure how that compares to your 1.47? The cutoff for treatment for me is 1.0. I did ask about diet, exercise etc. Basically they said there is nothing they can do but rest.  I did ask about the shot, but for some reason they did not want to give it. I am at a major cancer center in chicago, so I think they are pretty up on everything, but I will check. Right now the plan is wait a week, hopefully counts are back, then give me a lower dose. It does help to hear others have experienced same, particularly as I agree I feel 100% normal, so can't figure out why counts are low.

As always, much appreciated.

Carol

carolynf

Hello everyone,

It sounds like a lot of low WBC's.  I can say for me, it was rest, rest, rest.  I did work and ate the same as Brena (except for the oreo's .  They did say that there's nothing you can do for WBC.  I never skipped a treatment but I also took some herbal supplements that I spoke to my onc about.  I took flaxseed (either pill or oil) daily, B12 daily, Caltrate, L-cartinine (3x a day), milk thistle, and drank Noni Juice.  Was it any of this that contributed to my treatment?  My brother swears by flaxseed.  He's read so many books on it and he's the one who had me talk to my onc about it.  I have had a drop in WBC on avastin but I also had stopped taking flaxseed, noni and B12 daily.  I am starting again w/my daily supplements.  We will see how Tuesday's CBC's come back.  I will let you all know.

Brena,

I know we shouldn't worry about all lumps and bumps but I would definitely have the lump cked.  I know we all hate having mammo's and that's not the most reliable way of detecting BC, so I would definitely ask for ultrasound.  My scars have also healed up pretty well. I still have a dent due to the location of the incision.  I showed my daughter yesterday and told her I might go w/a breast reduction due to the indent.  It just won't be soon!  I agree about having more surgeries etc.  My last tx is in Nov and I would like my port out in Dec so in 2009 I can start w/a fresh outlook...I also should try taking benadryl at night instead of Lorazapam which is not working that well.

Got to run and pick up one of my kids.

Later,

Carolyn

Keryl

keryl here. i was away for a bit; had my auxilla nodes out last week, which is sill very painful without percocets. i am one handed as i type.

i did commit to avastin and have to repeat a bunch of tests over the next few weeks as they need to be current within 30 days of the avastin start date. I start chemo on 9/24 now, as onc wanted to wait 3 weeks post surgery if avastin was involved to ensure healing. 

I think I will go the part time working routine as well initially and see how it goes. I can work at home, which helps. I already feel like I have insomnia coming on just from the stress of it all.

I hope you are feeling better. I am enthused about hearing that many of you are staying with some excercise routines, though I am sure it is hard. I am afraid of turning into blob as I have not done much for over 2 months now with surgeries, etc.  

thanks for your advice everyone. I have a trip planned with some old college roomies (planned before all this started) for the 2nd week of November. It will involve a long flight and about five nights away. I will be on approx. my 3rd chemo treatment. I need to cancel 14 days prior if I think I cant make it. I am willing to go even if feeling poorly to cheer me up, but could this be a disaster away from home and sicker than anticipated? For those who are near 3rd treatment or recall, what would your thoughts be?  

Keryl

forgot to answer that I am in CA and trial associated with UCSF. As I understand the cost bit - the pharma company covers the cost of the trial medication and testing is typical as part of cancer treatment anyway and it is a NCI trial so insurance should cover most of those tests. 

Has anyone experience significant out of pocket increase due to avastin trial? just prefer no surprises. I did ask physician and answer above in 1st. paragraph.

cjw

Keryl

In terms of exercise--I was worried about the same but I have been able to either walk, run or play tennis every day since starting treatment. I do definitely get more winded as the RBC counts are low, so am walking more now, but can easily do 4-5 miles. I was worried about the blob factor too, but I found that since your appetite is so off,  you have to be careful not to lose too much weight.

In terms of cost, we have not had to pay anything extra for the avastin. But in terms of flying, you might want to be careful--planes are germ factories, particularly in winter and you will be susceptible to germs. I typically traveled 2-3 times a month for work, but have not at all on the advice of the drs. I have been able to work almost a normal schedule though, but am doing one day a week from home. (I work 3 days a week total and have a very tough commute, so the extra day home really helps)

hope this helps

carolynf

Keryl,

When I was first diagnosed I had already made travel arrangements for a family vaca to FL.  My onc said it would depend on how I felt.  It was 3 months from the start date of treatments. It happened to fall in between the end of A/C and beginning of Taxol.  I was feeling tired but my counts were fine and I went on vaca. The nurse did give me some of those blue mouth covers that they use for teh flight.  The only thing with them was it breathing thru them.  The flight was 2.5hrs so it wasn't that bad.

In regards to out of pocket costs w/Avastin...my insurance covers cbc's and the normal stuff.  I haven't had to dish anything extra out. The trial covers EKG, echo and the drug itself.

In regards to exercise, do it if you can.  I am not as fortunate as cjm in that I gained weight.  I talked w/the physical therapist today and she gave me some exercises to do that will help strengthen the upper body.  Esp. since I don't have the same span w/my arms.  I also have to start walking again.  I am still fatigued on days but need to take time for myself and exercise.  I actually started tonight. I have 4 more avastins to go and will be done with treatments.  

Carolyn

carolynf

Teresa,

How are you doing?  Are you having any SE from the avastin? I am still carrying around a box of tissue.  The darn nose is just a faucet on and off!  Had tx today and onc did breast exam and was very happy in the way everything has healed.   I did talk to him about not getting sleep and he wants me to try and exercise in the morning.  I told him its hard enough getting up and going to work some days...Tomorrow the kids start back to school so there's more things to do. He doesn't want to prescribe drugs or have me take more. He wanted to know if it was tiredness or anxiety. I told him I really don't know. So, no more reading in bed. He did recommend talking to therapist if its anxiety but wants me to try the exercise too.  Hope to hear from you soon!

Carolyn

carolynf

Brena,

So how are you feeling?  Hope you are getting some energy back.  I didn't get to take the HD out this weekend.  I have been running around w/the kids here there and everywhere. My husband just got back tonight from HD's 105th anniversary in Wisconsin.  He got some windburn on his face and looks like a raccoon.  Now its his turn to do some running around. How's your insomnia?  Is it getting better?  My body tells me bed but the brain doesn't.  I hate it!!  Need to get them insync. Take care.

Carolyn

brena

Desi,

I worked 3 of 5 days during chemo and Taxol. I did not work during radiation due to travel distance and expected to get really burned due to pigment of skin, and fatigue. If I went to work and radiation I would of spent 4.25hrs each day on the road traveling to and from. Cancer center and work were in two total opposite directions. I would of exhausted myself trying to do both, I had FMLA with 100% pay for 12 weeks, so I saved some of that time to be applied during radiation. I was truly hoping to catch up on some sleep during the time off, didn't happen. Some woman work through their entire radiation treatment. You might have to start and see how you feel.

Glad meds are helping with the nausea. Has the cough gone completely away?

brena

Ladies,

My first night back to work since June, the shift had a dinner in honor of my return. The food was great and we do know how to celebrate. Instead of 4hrs I stayed 6hrs, and then had to take a woman home due to her husband slit his wrists (purpose). Not the most quiet night at work but was glad to see everyone. I might be a day behind on answering the posts because I work night shift.

Took a sleeping pill and getting sleepy so I will be back tomorrow, have a wonderful day.

brena

Carolyn,

I have been getting a little more sleep than usual and am hoping it continues. I do take sleeping aid or benadryl to get some sleep, alternating them. So many woman on this site have sleeping problems so I cannot believe there has been no research into the problem and a given solution. I have faith my insomnia will get better but it is so frustrating to deal with. Most of the time I can fall asleep and after 4hrs of sound sleep I wake right up almost the same time every night. So how can you have something on your mind that wakes you up from a sound sleep every night? The nights that I cannot go to sleep I feel the same as you, the brain will not shut down but it is very tired.

I am still exercising and eating pretty good, except the two nights with Oreo's for a snack but I did ride a few extra miles on my bike. If exercise contributed toward sleep I would be in a coma! next suggestion.

How was the HD run did hubby enjoy himself? just a few more weeks left of nice weather. Kids back into school routine?

Are the nails growing pretty good?

On my non BC breast, the right outer-side of that breast has multiple lumps including the one I mentioned in an earlier post. When I feel my radiated breast I do not feel any lumps anywhere, this is how I recall both breast always felt before this year. I know that I am 46 and lumpy breast are part of the pckg but am not sure how different the breast should be with radiation being involved in one of them.

Do you feel a significant difference between your breast?

take care,

brena

Hi Keryl,

Am very glad you decided to join the trial and may your journey be an easy one. My port was installed in my right chest and the darn thing hurt for a month, seemed longer than most people. I have not experienced any out-of-pocket expense with the trial. The packet they provide explains most if not all tests are "standard of care" which would be covered by your insurance. If the trial requires a test that your insurance does not cover the trial will pay the expense, I encountered this with a different trial.

I started to walk 3+ miles a day shortly after my 2nd round of A/C, after several months I developed infections in my large toes and could not continue to walk for several days. I then purchased a bicycle and road everyday increasing my miles to currently 12+ miles a day. I believe the exercise help reduced the SEffects from the A/C and Taxol. The exercise was extremely difficult and some days I pushed really hard to finish. I have actually lost weight since the start of chemo and am continuing to loose weight every month, despite those two nights with Oreo cookies. I just hope it is something I can stick with for a lifetime.

I also had a trip to Turkey planned and scheduled to depart during my A/C session, my Onc recommended against it and I rescheduled. I am glad I did because I would not have enjoyed myself because I felt like crap and suffered from Insomnia in addition I was more susceptible to germs. There are woman on the boards who do fine during the A/C session and continue to work and other activities. Can you take travel insurance on the trip so if you decided to cancel you can get reimbursed?

Who is the gentlemen in the photo with you? Did you have a lumpectomy or mastectomy?

I hope you heal quickly from you port installation.

take care,

Keryl

Thanks for your advice. Yes, this freakin port is a pain - I am meeting with my PT on the 19th to set up my plan for workouts. I do love to walk though and a nice resevoir nearby. I dont like sweets so much, but love salty snacks, so that would be my downfall, rather than oreos. (unless of course the oreos are crumbled on ice cream....)  

As far as the trip, no insurance avail unless I cancel 2 weeks in advance ; by then I will have a few A/C sessions under my belt to see what I think. I hate to miss it, as it seems it took us 20 years to find dates we could all make. That being said, this health issue must be my priority.

Yes, I had a masectomy/SNB in July and axiallary dissection last week. Today I got the call that they found addtl. 2 nodes when they went to axillary. (2 sentinels were +) That totals 4 of 9 from lymph.  I hate that because now on the cusp of radiation too and frankly, want to be as aggressive as I can so hope onc supports radiation too, unless the risk outweighs the insurance.  Looking at your posts it appears you had radiation and chemo rounds and avastin - any advice on how it all comes together ?

The guy in the photo is my hubby of 23 years.  He has been great and is an eternal optimist; sometimes drives me crazy.   Get this, with positive intent he got me a book recommended by someone at his workplace as being "inspirational" ; well, he didnt look closely at the book because it was called "The Last Lecture" written by a young father who teaches college, has pancreatic cancer and writes his memoirs, last class lecture and the memories for his kids. That was not a good pick for me, and I lost it. Needless to say, I pretty well cried most of the day. whaaaatttt?

Also, I have saline immediate reconstruction underway. Its the least of my problems, as that piece is all going well.  

Keryl

meant risk outweighs the benefits.....re. radiation. (i think I am tired...)

S3K5

Brena,

Thanks for your reply. I am going to wait and see how I feel by the time radiation starts. I finished 6 Taxol/Avastin/Placebo - tomorrow is my 7th one. I have a lot of body ache and fatigue and some neuropathy in my toes. The dr had prescribed some prednisone but I cried on the days I took them (depressed) - so I take only Ibuprofen and tylenol for pain. There is nothing I can do for fatigue - some days it is worse than others.

I hope your insomnia is getting better. You must be happy to be done with all the treatments and starting to back to normal.

Take care,

Desi.

S3K5

Keryl,

I am sorry to know that the doctor found positive nodes after the surgery - it is hard enough with one surgery. Please let us know how it went. If you are on the trial with Avastin, then chemo might wait till you are completely healed (usually 3-4 weeks). In case you get Avastin (instead of placebo) then it is known to slow down healing.

Brena and others have undergone complete treatment regimen - they are the best to advice you. I have finsihed AC and now I am on Taxol (along with Avastin/Placebo). Later I will have radiation due to lumpectomy and positive lymph nodes. I am really worried about radiation and its side effects.

Take care,

Desi.

brena

Kara & Erika,

How are the Taxol treatments going? Would be great to hear from you both.

smiles,

brena

Ladies,

I started taking Black Cohosh for nightly hot flashes, no sweats. Hope it helps as the Onc will not consider giving me low dose HRT for the problem. Hot flashes also cause me to wake up and contribute toward my insomnia so I would like to find a fix. The only SE to Black Cohosh that I don't look forward to is the weight gain, maybe it won't happen.

Has anyone heard of anything else for hot flashes that I could try if this doesn't work?

3:15am,

PinkVelvet

Hi Everyone,

I'm sorry I'm not better at reading and writing the posts.  I did finish my last AC a few weeks ago.  I still felt nausea but psychologically, it was a big boost that I didn't have to do the AC any more.  

I had my first Taxol last week.  I slept the whole treatment, then more napping when I got home.  I actually felt like my old self again for a few days- clear head and good stomach.  But I've been really tired, moreso than on AC. The tiredness continues although I am fortunate to have some time to take naps at work during my lunch break.  

Despite being tired, I've been having trouble sleeping, which seems to be common.  I have been taking Benedryl which helps me fall asleep but I usually wake at 3 am (this was common before all this BC even began).  I've been trying hard to relax body and mind and it helps sometimes but not others.  I've tried other sleeping meds in the past (ambien, trazadone) but haven't liked them because of how they make me feel in the morning. I wish there were better answers.

Is anyone else having a lot of nose running, eye watering?  I've gone through boxes of tissues.  It's not a terrible side effect but people think I am crying a lot because I'm always wiping my eyes, sniffing.   

Keryl - I am glad that you signed up for the trial but I am so sorry that you have to go through it all.  I found the AC to be very difficult - lots of nausea despite all the good antinausea drugs. It would have been hard for me to go on a trip during this but, as I'm sure you've heard, "Everyone's different." 

My thoughts are with everyone,

Hugs, Jen 

karakay

Hi All,

I know I have been MIA since I started chemo treatments, but I have been reading all the posts and appreciate this forum so much. Thank you to everyone!

An update on me...Tuesday was my 2nd taxol treatment. 10 more to go! 

The AC portion of treatment was a roller coaster for me. It seemed that the first week after treatment I was super tired and had bad bone ache, muscle pain and skin tenderness. The second week I was almost back to normal and I did lots of activities... I traveled to Charlotte, drove NASCAR with my husband, went to Yankee games, went kayaking and tubing.

However, throughout AC and even now during Taxol I have a sore throat, runny nose, and very watery eyes.

My biggest problem is that I never had a port put in, and my veins are questionable. Sometimes the IV goes right in, and on other days it takes several tries, which is very difficult for me, and also for my husband and parents to watch.  I just keep praying that my veins will hold up, because I don't want to have to postpone treatment to have the port surgery.

Hope everyone is staying strong and healthy as possible.

Kara

brena

Kara,

Glad to hear from you and that you faired will with the A/C. You definitely did better than I and most woman who receive the "red devil." Your A/C symptoms appear to be similar to mine, Carolyn and Teresa, your symptoms should subside the further you get from your A/C shots. Although, Taxol and Avastin both give the same SE's, hang in there your more than 50% finished. You will not be going through Rads, correct? Are you working while going through treatment?

Hope your mom and hubby are great support for you.

take care and stop by more often,

brena

Jen,

I hope you find a solution to your insomnia, I have tried many different drugs and alternatives with little to no results and also disliked the day after hangover feeling. I am currently taking Ambien Cr/benadryl (alternate) and Lexapro to get enough sleep to function. Each week that goes by it does get a little better, but by far not normal. My last Taxol treatment was May 2nd and am still struggling with lack of sleep, so keep trying and I hope you find something that works for you.

The runny-nose, watery eyes can be from Avastin, Taxol or just allergies and change of weather. Almost everyone in this trial has those SE to some degree. I tried allergy meds twice a day for two weeks with no improvement so I stopped taking them and gave up on alternative drugs. Eventually after completing the Taxol those Se's slowly subsided. I got frustrated with trying different drugs to get rid of SE's that I didn't know were from what drug or just a normal reaction. Talk with your Onc on your next visit and maybe he could recommend something to give you relief, I found nothing that worked for me. Carolyn or Teresa may have a good suggestion?

keep us updated on your SE's and insomnia,

brena

Ladies,

A week ago I wrote and said I was not up to anything that involved testing, poking, probing, squeezing, slicing, dicing etc. unless my life depended on it. Talk about putting your foot in your mouth, someone should of just slapped me right there and then!!  Sept 3rd I developed Breast Edema in my radiated breast along with pain down the arm. I went back to the Rad/Onc this past Wednesday only to be diagnosed with Edema and guess what..............MORE ANTIBIOTICS  and you ladies should know by now how much I just love taking them. I hurt so badddddddd, swollen, throbs like a toothache, lymph nodes under arm hurt like hell and my breast is mishapped due to the retained fluid. Wearing a bra just compounds the problem, trying not to wear one around the house. I forgot to ask the Rad/Onc how long before I should feel relief, anyone take a guess?I go back in three weeks for a follow-up to ensure am healed or healing. I am applying ice packs which give short term relief, Cephalexin along with tylenol. I googled to find as much information on Edema as possible to find out if will return or just a one time problem.

I was healing and feeling so good.....I just knew it was to good to last!! I sure do hope no-one else gets this crap, feels like being radiated all over again. One good thing, no Mammo anytime soon.

I start back to work a full 8hrs next week, not sure how that is going to fair with the breast hurting so bad. I hope everyone is enjoying what is left of the summer because the holidays will be here before we know it.

 sleep well,

brena

Desi,

Almost time to be unblinded, two more weeks and I hope your hanging in there. Have you developed a red rash on your arms?

stay strong,

PinkVelvet

Brena,

So sorry to hear about the Edema.  It sounds extremely painful.  You've been through so much, I just hate it that you have to go through this too.  I have no idea how long it will take but I hope it subsides soon.  I also hope that it doesn't interfere with the little sleep time that you've managed to gain back.  

My sleep is going fairly well.  I had my second Taxol last Thurs. and slept for 4 1/2 hours afterwards.  I haven't been as 'wired' as I was with the first dose of Taxol.  I usually take Benedryl before bed and it helps a lot without the grogginess in the morning.  RE: the watery eyes and nose - I will mention it to onc at next visit although I'd prefer to just put up with the SE's rather than try a new med.  Taxol is a lot better than the A/C ('red devil' - that's exactly how it felt to me). Sometimes I feel like my old self and it gives me hope that this will be over with some day - at least as much as it can be.

I hope you sleep well and I'm sending you lots of positive, swelling-reducing thoughts.

Jen

PinkVelvet

Hello Everyone,

I have been thinking of this since I had my last chemo on 9/11.  While I was getting infused, I overheard one woman talking to another - she explained that she had had breast cancer and now it has spread to her bones.  

So here's my question . . . what is the standard procedure for follow up after chemo?  For the breasts, I was told that it would involve self-exam, mammogram and ultrasound about every 6 months.  Some people also recommend a breast MRI too.  What about for other areas?  Do they just wait until symptoms appear or do they do routine scans to make sure things are going okay?

I hate to think about this but I can see an end in sight to the chemo which makes me wonder what will happen in the future.  Anyone have any insight or know where I can go to get it?

Thanks, Jen 

S3K5

Hi Ladies,

I have been reading the posts today - I was feeling totally exhausted all this time. Just finished 8th Taxol on 12th Sept.- 4 more to go! I have extreme body ache for two days and then general feeling of tiredness. Hopefully 4 more treatments will go smoothly. I'll be happy to get some energy back!

Brena, sorry to hear about the edema. I hope you feel better soon. My unblinding will be done on 26th Sept. My next worry is radiation - I don't know how I'll fare. The nurse said I'll get a few weeks break after Chemo. before radiation starts. That will give some time for recovery.

Take care,

,Desi.

brena

Jen,

Thank you for the good thoughts and concern, feeling like a setback is just dragging me down. Breast still hurts and I did call the Rad/Onc today to see how long before the antibiotics  take a noticeable affect, told two weeks.

I am glad to hear your fairing pretty good with the Taxol and even feeling a little of your old self.

Now to answer your questions, first things first. As the other woman give input you will find that our follow-up will be different for several reasons: based on our individual needs, Onc's preference and ACS recommendation and your insurance company. This trial does require certain tests be performed at set frequency, such as  Mammo at 1 year along with an EKG and Muga scan. Other tests are to be performed as symptoms occur and are not considered standard care. Some  woman feel the need for certain tests to be performed such as MRI instead of Mammo, this need and reason need to be discussed with your Onc or medical provider. Self Exams have even been frowned upon because of high false alarms but I do not agree with their reasoning and will continue to perform them.

So yes to your question and concern, no further testing unless symptoms warrant. I asked about the Mammo and told at 1year, due in August but not with the Edema. In addition, I had a chest xray prior to lumpectomy and a recent bone scan due to physical pain in the lower back. I recently had a dexa scan as a requirement prior to entering a 2nd trial using a bisphosphonate but would not be considered standard of care.

You as a very good question and I am curious to what others are told is considered part of their BC care. If you have any symptoms that warrant medical attention talk with your medical provider.

very glad to hear your progressing nicely,

brena

Desi,

How are your blood counts? are you feeling worse as you progress with the Taxol?

stay healthy,

S3K5

Brena,

My RBC is around 3 and WBC is 3.3 (just high enough to get the treatments!) My hemoglobin is 9.4 and dropping! I feel run down after 48 hrs of Taxol treatment. This has been a pattern - infusion on friday, a little tired on sat and sunday; intense body ache on mon and tuesday; pain is slightly better on wednesday and on Thursday I can feel 'almost normal'! I am so glad I can stay home and lounge around! I am thinking of going back to work after chemo. is over.

Did you have a break between chemo and radiation? I was told that there will be a 4 week break between the two, so that the body can recover.

Hope your edema has come down and you are feeling better.

Take care,

Desi.