Clinical Trial E5103

sftfemme65

Hi Carolyn and Brena,

I have a quick question about the sequence thing.  Carolyn you were 6 and brena was 5...what does this mean?  I just did treatment 8 and I'm tired too carolyn, I need to take some ativan so I can sleep.  So far I think I'm doing ok.  I am having a little more bone/muscle pain mostly in my chest and upper back, hips and lower legs.  I also have ugly nails.  my fingernails the middle ones well they look like they are starting to detach.  no pain really but kinda scarey.  tonight my feet are tingling kind of, I'm thinking I may be get a little neuropathy, I really hope not because I do not want a reduction in the amount of chemo.  my toenails are ok so far.  I'm loosing more eyelashes now and last week I lost my hair again but on the upside my eyebrows are good lol. 

I'm trying not to be to scared about the out come of this trial.  I have 2 weeks and then I'll know. 

So thats my update.  Did either of you have any neuropathy? 

Oh yea, Carolyn what was your wbc?  Mine was 3.9 today.  Each week it drops a little more.  I hope it just stays right where it is. 

Talk to you guys soon,

Teresa

brena

Teresa,

Good to hear from you. So sorry to hear your experiencing body aches. The taxel is known to give bone and muscle pain, typical SE, you may feel the aches until a few weeks after you finish your treatment. Try Tylenol or call your Onc for something a little stronger if needed. I have not had the Neuropathy or body ache SE's as you are experiencing but I do have one spot in lower right back that has been an ache off and on for two weeks, showed Onc and he said it appears to be muscle. I also ride my bike for 12+ miles daily and I think that has been my saviour from the SE's. When I could not ride for 3 days because of my toenails every muscle and bone from the waist down ached, bad toes or not the 4th day I was back on the bike (wore my pink slippers) and the pain gone almost immediately. I feel for you girls! maybe a body massage or some bengay?

What did your Onc say about your fingernail condition? gosh I hope they don't come off-not fun. I had pain under my fingernail beds but after I trimmed the nails short the pain was gone, will keep them short for a few more weeks. At least with my toenails missing I can put shoes or band aids on them. My Onc skipped my cycle when my toes showed the same symptom as your nails, then all sequential cycles are a 20% reduction of Paclitaxel. My red rash has minimized since the 20% reduction in Paclitaxel although still visible.

The eyelashes were a goner from week 2 of Taxel (gave up after poking myself in the eye several times with the liner), eyebrows are very thin and blond (should be brown) so I very carefully darken them with eye pencil to give a little more of a female look.

Positives: I don't have to shave my legs for my trip to Bermuda, don't need to take a razor, shampoo, conditioner, blow dryer etc. Just taking a bathing suit, smile and of course the sunblock!

The sequence number is the number assigned to each individual (like your name) as they are registered into the trial, since its open date in December 2007. I was the 5th person registered and Carolyn the 6th to this trial. Each person is randomly assigned an arm (A,B or C) as they are registered.

This is the interesting part: the random ratio for this trial is 2:2:1 meaning two people get assigned to arm C, arm B and one person  arm A. This ratio is repeated until the qty of persons are reached to meet the trial requirements.

Follow this: I was sequence number 5 and assigned arm A (1), Carolyn sequence number 6 and assigned arm C (2) the sequence is repeated. The person assigned sequence number 7 could be assigned arm C, sequence numbers 8 & 9 arm B etc.

 Once you are unblinded and given your sequence number we can speculate the random sequence order. It is like a raffle, and the randomization is designed so one cannot determine the pattern but there may be a pattern, we will see.

Stay healthy ladies you are on the home stretch,

brena

carolynf

Good Afternoon Ladies,

Trying to get some energy back...I can't remember off the top of my head what my WBC was but I think it was somewhere around the 3.8.  My onc was looking at the neutrophils numbers which has to do w/wbc.  He's just hoping that they stay up for my last taxol. Like Brena said, stay away from sick people. I might leave work early today to just rest.  Not sure if either of you are having eye problems. Like tired eyes, watery.  When its windy outside I have to protect them even w/glasses on. No neuropathy and hope to not have any before next week!  My nails are ugly too!  A couple have a tinge of what I call "smokers fingers".  That tarrish color on the edge.

I have an appt on May 20th w/my rads onc.  He wants to talk prior to setting up tattoo appt.  Works for me.  Hair is still growing but the crown is getting funky.  Spikey, so I don't know what's going on there.  I have a couple upfront, white hairs that are now curly.  I still have to wear a hat due to my ears get cold.  Well, got to get some work done here.

Later,

Carolyn

brena

Carolyn,

Check your list of SE for Avastin I believe the watery eyes is on the list. I need to have my vision checked it is taking much longer to focus, will wait a few months to ensure it is not the drugs causing the problem.

Glad you don't have the Neuropathy your on the home stretch so you should not have to deal with the SE, you could put nail polish on the nails to cover the "smokers tinge" if needed, the tinge should start to disappear in several weeks after your last session (hope.) My nails always have nail polish on them so I don't have to look. However, I do know there are a few nails that are discolored due to the taxel, but I refuse to look at them just glad their still intact and don't hurt.

Last taxel shot this Friday!! People at work are sick and I am desperatly trying to stay away from them, even spray my desk and phone with lysol.

I admire your dedication to sticking with your plan for rads and you already have a consultation, you will be my inspiration for this phase of our journey. Let us know how you make out after your visit.

Tomorrow is May 1st and after reviewing the calendar I have calculated the last 7 days in May as the only days not already booked with a commitment. I still have other appointments to schedule, no not rads.

I am feeling pretty good this week, tired as usual with a few spells of being dizzy/lightheaded. I am sleeping pretty good with the help of some meds but look forward to my body getting back to feeling normal, I almost forget what it should feel like. No meds, aches, pains, sleep normal etc. Our bodies will return to normal...right ladies?

  

may you be given your last shot

keep the head covered and stay healthy

brena

carolynf

Good Afternoon,

I had a rough day on the phone w/the boss yesterday which really got me stressed.  I had a client in my office who has a daughter who was diagnosed at age 2 mon w/neuroblasta cancer.  She is now 12.  She took  her to Beth Israel for most of her treatments.  She has been cancer free for 10yrs.  We talked a lot about alternative medicines because BI hospital is into it.  So, we talked about noni juice, flaxseed oil, essiac tea, milk thistle etc.  I was amazed at what I have been doing is what she had done w/her daughter long ago w/the medical team.  She did say to stay away from stress which I think we all agree.  So i left work early (1hr) to destress.  I was wiped out this morning. Very fatigued, eyes, throat, headache, bodyache. What is up???? Was it the stress??? I slept most of the morning and feel a little better but am also light headed w/mild headache. Took some Aleve.  I am waiting for it to kick in.  maybe some cucumbers for the eyes may help.  Brena, i think you are right about the se w/avastin as to watery eyes.  I will try to get one of my kids to do my nails....(I've held my costmetology license now for 22 yrs but I enjoy someone else pampering me!)  I took my temp and it was 98 so am safe there.  Like you said, 1 more to go.  My daughter is home sick today. She was vomiting last night so I have told her to talk to me from afar.  She has stayed in her room only to go to the bathroom.  Well, I am going to try the cucumber on the ol eyelids.  Good luck tomorrow on your last shot of taxol.

Teresa, I hope you are feeling better.  Maybe some paraffin wax on the hands?  Scalp massages can do wonders too!

Take care,

Carolyn

brena

Carolyn,

So sorry to hear about your having a stressful day and it appears much emotion involved. Glad you headed home as you cannot afford to get sick and stressed out! Get your nails done and even add a body massage, maybe your hubby would accommodate.

I didn't think of the paraffin wax, I do have one of those gizmo's. I think I might try it maybe it will take the red out of my hands. Good suggestion!

Funny you mention stress as an indicator that affects our health, at my last BC support meeting four of us were talking about our stress levels prior to being diagnosed. Three out of 4 of us were experiencing our highest level of stress 1.5-2 yrs prior to being diagnosed. We can't hide from it so we need to learn how to manage it better so it causes minimal health issues.

Not sure how many weeks I get off from my visits after last shot tomorrow I am hoping for the rest of the month? think I can? I feel pretty good, with the expected fatigue and the CHEMO brain factor is driving me insane. I forget what I am going to do or say, at times I slap my head in hopes the thought will come forward. I loose the thought just going from one room to another or even in a sentence. The experience has been so bad in the last 3 weeks I am scarring myself. My memory has to start getting better really soon or I just may have to make reservations at the local senility house.

cheers,

brena

brena

Carolyn and Teresa,

Had my last Taxel shot Friday and I did get the entire month off from visits. Go back the last week of May for the start of my follow-up and the beginning of trial S0307. I need some prep work prior to starting the new trial so will work on getting some of that completed. Not sure what the frequency of future follow-up visits will be as we did not discuss this in detail, I just wanted off for the month to try and get my body back to a normal feeling before vacation and the start of the next trial.

My sister is in town so spending time with her and doing a little shopping for the Bermuda trip.

Got stubble's on the head and of course they are not uniform or even the same color, shaved them all off! Maybe the new growth will be more consistant, I can deal with the odd colors.

I am feeling the normal fatigue but am sleeping pretty good so it doesn't seem as bad as the last few months. Except Friday night those damn steroids even trumped my sleeping pills, hope for sleep tonight.

Hope both of you are well and healthy! write soon.

smiles,

brena

sftfemme65

Hi Everyone!  I just did treatment 9 today....I find out about the avastin in a week.  I think thats why I'm moody, or its just the steriods.  I am having such a hard time ast the month moves on.  I miss my mom so much it takes my breathe away.  Some days I am so angry that cancer took away my right and ability to grieve for my mom.  Once I found out I have BC I had to focus my attentions else where, its not fair.  I need her so much now and I feel so lost some days.

I'm sorry to unload on you guys.

I should just go home and take my ativan and sleep for 3 days til this passes.

Thanks for listening,

Teresa

brena

Teresa,

Never be sorry for telling us how you feel, we are here for you!! always! please tell us about your mom and what your feeling. We will listen and give you the biggest shoulders we can send you.

The emotional roller coaster (how I refer to it) you are experiencing is normal and will continue for some time. It is influenced by the drugs, our hormones and always trying to be the tough person (keep emotions inside.) But those influences in no way lessen the love and emptiness you are feeling for your mom. Talk to us.

I have talked with many many woman who are still going through the emotional roller coaster including me. When your emotions start getting tugged do what makes you feel better, including crying...its ok really.

talk to us.

brena 

ps

the red rash is not an indicator of receiving the placebo, the experts cannot do a comparison among arms by putting a different drug in the placebo and not the Avastin. We both are experiencing a reaction to the Paclitaxel. Can someone go with you to your next week treatment for support?

carolynf

Hi Brena and Teresa,

Teresa, I am sorry about your mom.  I have lost quite a few friends in the past 6 months and being on chemo has UPPED my emotional roller coaster.  My mom brings me to chemo weekly for the taxol and today was the last one.  Even though I am going thru this I love the time I get to spend w/her.  SHE IS THE BEST.  I am very rich by having her.  I know there's nothing I can say to change anything but always remember her in your heart. That will never go away.  I still have my dad there after 15 years.

Brena- you trooper you! Another trial and I hope this one is not blinded as I remember you saying...I have a small rash on my index finger that is almost lightly caloused (sp?).  My lab was almost perfect today except one item was high by .5-So my onc is very pleased w/that.  I go Friday for ekg/echo and then the hospital gives cancer patients free massages!! I hope that will relieve some of the stress.  Had a softball game tonight and the girls whooped butt 20 to 6!!  Hopefully you are enjoying the shopping w/your sister.  My hair is touching my ears  In 1 month, my troops were amazed at how much my hair grew.  It's white and grey but its covering my head. 

I talked w/my onc about my appt w/the rad onc.  He said they had talked about a trial but dismissed it because it was more for the positive receptors and its NEW.  I said I am fine w/the one that's been out there that works for negatives.  I pick up my dog Lexi tomorrow. I adopted her from TN and they drove a heard of dogs that would have been euthenized if no one took them.  i think I am more excited than my kids.  Well, I think its time to get some rest.  I start the 10 cycles of avastin next monday at 9:30.  Another countdown.  Take care and remember to let your emotions flow.  its good for the mind, body and spirit.

Carolyn

sftfemme65

Brena and carolyn

thanks for your support.  My mom has been gone since july 19.  She fought colon cancer for almost 3 years.  she was stage 4, inoperatable and they didnt give her even 6 months.  I believe Avastin is what helped her the most.

This how my life has gone since April  of last year..... April 07 lost my grandfather, May 07 my grandmother, June 07 my aunt, july 07 my mom , found out I had BC on November 28 in the middle of dealing with the holidays and my mom and grandparents being gone, had surgery on Dec 11 the same day my other aunt died a few hours before I went in, my family decided not to tell me til that night.  And now all of this......

I feel sometimes like I'm holding on to this thin thread. 

When I would take my mom to treatment they would say "Hi diane how are you feeling today?"  She would laugh and say " I feel shit but what are you going to do,it is what it is so lets get on with it."  She never gave up.  She was the strongest person I have ever met and I miss her so much.  And I'll be honest, I don't want to die.  I am so scared some times and I just dont know how to cope.  I'm terrified to come off of chemo but I want to get on with my life.  I guess I' m just having a bad day.  Mother's day is coming up, we should be planting flowers, opening her pool for her, spring was her favorite time of the year.

Thanks for listening.  Thanks alot you don't know how much it means to me.

Teresa

sftfemme65

Brena and carolyn

thanks for your support.  My mom has been gone since july 19.  She fought colon cancer for almost 3 years.  she was stage 4, inoperatable and they didnt give her even 6 months.  I believe Avastin is what helped her the most.

This how my life has gone since April  of last year..... April 07 lost my grandfather, May 07 my grandmother, June 07 my aunt, july 07 my mom , found out I had BC on November 28 in the middle of dealing with the holidays and my mom and grandparents being gone, had surgery on Dec 11 the same day my other aunt died a few hours before I went in, my family decided not to tell me til that night.  And now all of this......

I feel sometimes like I'm holding on to this thin thread. 

When I would take my mom to treatment they would say "Hi diane how are you feeling today?"  She would laugh and say " I feel shit but what are you going to do,it is what it is so lets get on with it."  She never gave up.  She was the strongest person I have ever met and I miss her so much.  And I'll be honest, I don't want to die.  I am so scared some times and I just dont know how to cope.  I'm terrified to come off of chemo but I want to get on with my life.  I guess I' m just having a bad day.  Mother's day is coming up, we should be planting flowers, opening her pool for her, spring was her favorite time of the year.

Thanks for listening.  Thanks alot you don't know how much it means to me.

Teresa

brena

Teresa,

How are you doing today? I will be going into work this morning and back around 7pm will check in to see if you have replied.

Waiting to here from you.

hugs,

brena

carolynf

Teresa,

That is a lot to handled in 1 year.  Healing takes time. Sounds like your mom was quite a bit like mine.  A very strong woman. My father stayed alive long enough to walk me down the aisle for my wedding. We had to take him out of the hospital and they would only let him out in a wheelchair, he couldn't feel his legs.  My dad was very stubborn and said he was walking me and refused to use the wheelchair.  He did walk me down.  He passed away a few days later.  I try to look at the positives most days but I still get hit w/some negatives.  Keeping busy helps most. I just picked up my puppy last night and BOY did that keep me busy last night and this morning.  She is precious.  Her name is Lexi and she is mostly lab but has a little bulldog in her. 

I also went on the trampoline for the first time that we set it up for the kids....I think I need to have my bladder reattached.  I don't know if the chemo has added to the already overburden leaks.  That will be on my to do list for next year.  So Monday you get to be unblinded and I start my new regiment.  I am still fatigued.  I can be due to running around w/kids to practices/games and doing military on this past weekend. So I didn't get a lot of down time.  I may need to leave a little early today to take a nap before my sons game. My husband had to drive to CT w/his boss this morning so he won't be back til late so I have 2 baseball fields to be at and a new puppy to keep occupied.  It's another day in paradise! 

I can say that I have to wear my tevas w/socks because my toes hurt this week. So do my finger nails, esp. the pinkies.   not sure how long the taxol stays in your system before the se's go away. I hope soon.  Well, got to run.  Keep your chin up and if you need to cry...go for it.  I always feel much better to get it out than keep it in.

Take care,

Carolyn 

brena

Teresa,

My community will be having a Relay for Life event in June, in addition will include a Luminaria Ceremony for those that have been lost to cancer. I will be participating in the event and would like to light a Luminaria in memory of your mom, do you mind? If you don't mind would you give me her name.

thinking of you,

brena

sftfemme65

Brena,

What a beautiful thing to offer.  Thank you.  My mom's name is Diane Knutson

Well Monday is my unblinding.  I can't wait to find out.  My rash on my hands is so bad now.  In fact the worst part is on my left arm between my forearm and upper arm.  I'm trying hydrocortisone cream to see if it will help. 

I had another wonderful side effect that started 2 weeks ago, at least they think its one..lol.  I kept feeling like I had a bladder infection.  I feel like I have to pee all the time and then I have pain all the time.  They think my bladder has inflammation.  Nice hu?  Guess it happens. 

I hope you all have a wonderful mother's day and a great weekend

Teresa

brena

Teresa,

I will light a Luminaria in memory of your mom on June 6th. Sorry to hear about the rash and am sorrier to say it gets worse with each additional shot. My Onc reduced my taxel by 20% and it did help reduce the rash but did not eliminate it. I received my last taxel shot last Friday, May 2nd, and my hand/forearms still have the red rash. The only thing that helped soothe and reduce the redness was putting Chamomile tea on the rash. I tried the hydro-cortisone cream and it did not work for me, tried many others and also did not work. Good luck, maybe will work for you.

Are you having any further tests to determine what is going on with your bladder?

Since last Friday my fingernail beds hurt like Hell and my thumbs feel hot! I cannot even bring myself to having my nails redone due to the pain. My left big toe is infected again, I got a cut last weekend and have been applying peroxide and antibiotic to get it to heal. The skin started to heal but the toe is swollen, hurts and can hardly bend.

My body cannot seem to recover from cuts, scrapes and bruises like it should. I still have a bruise and mark in my arm from where blood was drawn 3.5 weeks ago.

Called the Onc and requested an antibiotic before the infection gets worse, last time had to go to ER (tried to be my own doctor.) I am leaving for my cruise for Bermuda on Sunday and do not want to worry about infection getting worse. Now on antibiotic for 7 days. Go figure even more SE after the last shot. I hope all of these SE go away before I start the next protocol. I was told several weeks before the drugs are out of my system.

My sister and I will be cruising from NY to Bermuda to celebrate my completion of this phase and my birthday May 14th will be 46.

My direct reports at work, about 20 people + remainder of my shift, had a surprise celebration for me on Thursday in honor of me completing this phase of my cancer care. They are a great bunch of people, they listen to me whine and show compassion for me, they amaze me and totally surprised me this time.

Per our protocol I complete my MUGA scan yesterday, I think I am normal but will be verified at next visit with the Onc.

I will not be here on Monday to hear about your un-blinding, and you know I have my fingers and toes (except infected one) all crossed for you to be in Arm B or C.

I do have an email address on the cruise that you could email me and let me know your results. I will have a drink in your celebration, if you pull Arm B or C I may have two drinks in your honor.

Email me at cmoeder9725@dawn.cruisemail.net

take care,

brena

sftfemme65

Brena,

I will have to try that tea to see if it works.  I am really worried about this rash because its on my left arm, which is my mastectomy side so of course I worry about lymphadema. 

I hope you have a wonderful time on your vacation.  I will send you an email as soon as I get home with the news. 

Have a wonderful weekend,

Teresa

carolynf

Hi Brena and Teresa,

Brena, hoping you a safe and enjoyable vacation/birthday.  I am sure the time will fly and the weather will be wonderful.. The sun and sea will help heal anything as far as I'm concerned.  I would love to work with your crew from work.  My military troops are the ones who support me more than my full time job.

Teresa,  I am excited that the time is almost here.  It has gone by quickly at least from my end.  I'm sure you are eager as we were to find out.  I have a rash now that is on my pointer fingers and thumb.  The underside not top.  They are very tender.  As for my nailbeds, they sound like Brena's except the sorest ones are now the pinkys.

Do either or you still have a runny nose?  I was suppose to start Monday on just the Avastin but it won't be here til Tuesday and I will be at the Cape. So, it looks like i will begin a week later (19th).  I am still very fatigued.  I didn't make it to my son's baseball game today. I just didn't feel right.  I did have a massage yesterday at the hospitals wellness center.  They offer free massages to cancer patients.  I had never had one.  It was wonderful.  I highly recommend it.

Wishing you both a Happy Mother's Day!

brena

Carolyn,

Nice to hear from you and glad most is well, I hope your fingers get relief real soon. Taxel is done so now its time for the SE to go away! actually I feel the pain is worse than several weeks ago. Keep an eye on the rash; although if it is the same as mine and Teresa's you can't stop it most likely caused by the Taxel.

I still have a runny nose, although the quantity of blood from it is becoming less.

I have had massages several times and they are always great, a special treat for myself. I am glad you enjoyed it and you should pamper yourself more often.

Get plenty of rest you are still recovering, don't fool yourself as your body knows best.

Do well with the troops and be careful. I will be back for your first round of Avastin.

Teresa,

Try not to panic or think to much on Monday, easier said than done but do try. I will try to get to my email by Tuesday to see how many drinks I will be having in your honor. I hope your family is well and you stay healthy.

My sister and me will be leaving very shortly to head for NY, we will stay at a hotel tonight and then catch the cruiseship tomorrow morning in Manhattan. I am dead tired, not sleeping well. I am hoping the ship will just rock me through 7 nights of sleep.

talk to both of you Tuesday May 12th if I can get email and if not when I return on May 18th.

note: I heard there are two other woman at my Onc's office who are suppose to start in the same trial as us. I havn't heard if they actually started but will send, by messenger, and invite for them to join us on this board. We have laid the groundwork for others to follow.

happy mother's day,

brena

sftfemme65

Hello carolyn and brena,

So for the big news first...I am getting Avastin and I was in arm c so I go on for 10 more treatments.  I'm very happy about getting the Avastin but not sure how I feel about 10 more treatments. 

Yesterday I had to go to the ER for my arm.  the rash has taken on a mind of its own and in a week has spread up my left arm, it's on hands a little on my face...very upset about that...so the ER doctor assured me that it wasn't infected but I definitely needed help with it.  I told her I had 2.5% steriod cream but it didn't faze it in fact nothing has.  she said that since this rash in caused by an internal substance it needs to be treated internally.  Makes sense.  So she gave me a shot of benedryl and a shot of metrol (steriod) and this morning it looked better...not great but better.  Well I talked to the doctor about all of this, I read what they got from the protocol and they really believe this rash I have is caused by the Avastin, mostly because I have had it through A/C and Taxol.  Also one of the common side effects is a rash from avastin.  Avastin is in the same family as erbutux, which is known to cause a horrible rash over most of the body so that would explain avastin having this side effect. 

Doctor is going to have me start a medrol pack in a couple days to see if it works.  I really it does because if it continues to spread or get worse they can not lower my dose because the trial doesn't allow for it, so I would have to be removed.  So I'm going to try real hard to get as many in as possible.

I hope you are having a wonderful time on vacation!  Oh I asked my nurse what my sequence number was and she showed me 50029?  that doesn't look right does it? or is it?

I have 2 more taxols to go, hope my nails can hold on!  so far no neuropathy.

Talk to you all soon,

Oh and thanks for all the support.....you two are the best

Teresa

carolynf

Teresa,

Welcome to Arm C but am not sure of that rash.  It sounds bad but it also sounds like you are getting it under control.   It's a good feeling knowing that you only have 2 more taxols too!!  I talked to my onc. today and since I will be gone i will not start the 10 cycle til the 19th.  I hope this rash/bumps on my fingers are contributed to the avastin. I put it to the taxol but maybe it is the avastin.  I did feel better today. Not sure if it was because I was busy at the air base getting ready for tomorrow or it was the no chemo today.... Well, I need to get some rest for the drive tomorrow morning. I am not completely packed either...i will get up early to do the rest.  Take care and I know Brena has found the sun and maybe a couple of margarita's to enjoy on a nice sandy beach or even on the deck of the boat.

Carolyn

brena

Teresa and Carolyn,

I am back and with a nice tan I might add!! I even used sunblock (as directed) I guess the Italian side of me is finally paying off. My bright red rash has lightened but now looks darker than the rest of my arm a little effect from the sun. Bermuda is great, wonderful island with warm weather and people. Definitely an island I will do again, but not out of NY. Four hours out of NY and a woman on our floor falls overboard from her balcony, the ship turned around and searched but no success. This story made the local and national news and was the talk for several days, so sad and a tragedy. Definitely did not feel like a good start to the cruise. First two days at sea were very rough told by crew member rougher than usual, other cruise ships experienced the same. Last two days at sea were not as rough but rough enough to cancel the outdoor activities. I found other activities to attend during those closed outdoor activities.

I hit the gym everyday and still ate sensibly and moderately, still did not sleep well. I felt and acted like the energizer bunny (normal for me) and it drove my sister crazy. She couldn't understand why I wasn't taking sleeping pills but explained I was trying to stay away from them. Ladies, on my birthday my sister and I definitely celebrated "life"  what a day and night.......never to forget, do have some photo's just as reminders!

I had found 8+ bruises on my body over the last two weeks, don't remember getting them and some are located in the most unlikely places. In addition, my thumb nail continued to become more infected (swollen and painful) during my cruise, by Wednesday (birthday) I could not take the pain anymore. I thought I would loose the nail or become sick if the infection was not drained, and I was taking antibiotics prior to leaving and during the cruise it just didn't help with this specific infection.

I found a safety pin  and asked my sister to poke through the skin around the nail to drain the infection. I didn't feel the pin enter the skin but brought tears to my eyes when she squeezed the nail, green liquid drained from the poked holes. We did this once a day for three days and each time more stuff drained. Still very sore today but am hoping it is drained enough for it to heal on its own, will give it another week.

My body still doesn't seem to be healing wounds and infections as quick as I expect. Maybe it's to soon for my body to fight off viruses as quick as normal people. I am not sure if the nail issue is a SE from the taxel or something else is going on in my body (lost two big toenails the same way.) I will ask during my next visit with the Onc., would like to know if this will stop at some future point.

Teresa,

I had asked my daughter to text message me on your unblinding, I celebrated your win with red wine, not saying how much. CHEERS and congratulations on drawing arm C but am sorry to hear your struggling with the rash. Have your tried the chamomile tea on the rash? as previously noted I had tried many suggestions and nothing helped. The rash does seem to take a path of its own. I am not sure the Avastin is causing the rash as you and I have the same rash and I did not receive Avastin. The only other common drug we share is the taxel and when my Onc reduced the dosage the rash ceased to spread but it still remains. It is now 2 weeks past my last taxel shot and the rash is still present, so if I am correct you will have the same for several more weeks. I am going with the notion the rash will disappear at some point but not this week. The sun definitely darkened the rash but at least it is not bright red, more noticeable.

I would really like to see both of you continue with the extra 10 weeks of the Avastin, your definitely making a difference for future woman (just in case you forgot.)

I am going to the dentist tomorrow at almost a year for cleaning (due to chemo), am looking forward to the visit. Getting some other test performed in preparation for my next protocol and yes I finally made my "setup" appointment for my radiation for June 2nd. I am not sure why this part of treatment is so hard for me to accept, still not sure on going through with it but at least the appointment is scheduled (step one.). One would think I would of had more of an issue with the chemo part of the treatment.

Carolyn,

I hope your drill was a success and your feeling well. Did you go for your radiation "setup" did you get your tatoos? Are you experiencing any other SE's?

Teresa,

How is the rash? what is going on in your part of the world? Your sequence number does not make sense, she may have given you one to many digits. Maybe she can double check the accuracy. How are the nails?

now that I have written a book I will say goodnight to you ladies,

I am going to finish my laundry because my sister and I may do the casino's or the beach tomorow...more tanning and maybe a wealthier woman.

brena

sftfemme65

Brena,

Wow a tan!  I would give anything to have a tan.  I did my 11th taxol today.  I have a little numbness with my toes, very slight I think.  I insisted that they not lower my dosage and lets see how next week is.  I have one more to go and I would prefer to do it with out lowering the dosage.  Tonight my legs feel so weak and I don't know why.  I am planning on going to Vegas next month and I can not wait!  I need to have some fun...fun...fun!

My rash is doing better thanks to all the steriods....of course I am a emotional wreck because of them too.  Dang.

Carolyn,

hows your husband doing?  So when do you start the avastin?  Let me know how you feel after your first.  I hope the fatique gets better.

Talk to you guys soon,

Teresa

carolynf

Hello Ladies,

I had my first avastin this past Monday...9 more to go!  I had a different nurse and she was able to get blood from my port.  I did get wicked watery eyes but am not sure if it was a se or the pollen is bad this year.  My husband is doing therapy for his hand and back.  So he is feeling a little better. Not as sore.

Brena, I am glad you got out in the sun and had a good time.  I am looking forward to summer weather...hopefully this Memorial Day weekend. My rad onc appt was suppose to be today but had to be rescheduled to this Friday.  So, i am not sure of that portion yet. Did you get tattooed yet?

Teresa, Yahoo! One more to go.  I ended up having the bottom of my feet get itchy for a couple of days but that's about it.  I asked my onc how long it takes for taxol to get out of the system and he said that there really isn't a way to measure.  i am still getting fatigued but am not sure if its because I have been working longer days and didn't have a weekend off and then started back on chemo.  I still have a sore throat on the left side but my onc is not really worried about it.  My echo and EKG came back good.  When i was infused w/the avastin i felt fine.  Well, I have a long day tomorrow and need my beauty rest.

Take care,

Carolyn

carolynf

Hello Ladies,

I had my first avastin this past Monday...9 more to go!  I had a different nurse and she was able to get blood from my port.  I did get wicked watery eyes but am not sure if it was a se or the pollen is bad this year.  My husband is doing therapy for his hand and back.  So he is feeling a little better. Not as sore.

Brena, I am glad you got out in the sun and had a good time.  I am looking forward to summer weather...hopefully this Memorial Day weekend. My rad onc appt was suppose to be today but had to be rescheduled to this Friday.  So, i am not sure of that portion yet. Did you get tattooed yet?

Teresa, Yahoo! One more to go.  I ended up having the bottom of my feet get itchy for a couple of days but that's about it.  I asked my onc how long it takes for taxol to get out of the system and he said that there really isn't a way to measure.  i am still getting fatigued but am not sure if its because I have been working longer days and didn't have a weekend off and then started back on chemo.  I still have a sore throat on the left side but my onc is not really worried about it.  My echo and EKG came back good.  When i was infused w/the avastin i felt fine.  Well, I have a long day tomorrow and need my beauty rest.

Take care,

Carolyn

carolynf

Hello Ladies,

I had my first avastin this past Monday...9 more to go!  I had a different nurse and she was able to get blood from my port.  I did get wicked watery eyes but am not sure if it was a se or the pollen is bad this year.  My husband is doing therapy for his hand and back.  So he is feeling a little better. Not as sore.

Brena, I am glad you got out in the sun and had a good time.  I am looking forward to summer weather...hopefully this Memorial Day weekend. My rad onc appt was suppose to be today but had to be rescheduled to this Friday.  So, i am not sure of that portion yet. Did you get tattooed yet?

Teresa, Yahoo! One more to go.  I ended up having the bottom of my feet get itchy for a couple of days but that's about it.  I asked my onc how long it takes for taxol to get out of the system and he said that there really isn't a way to measure.  i am still getting fatigued but am not sure if its because I have been working longer days and didn't have a weekend off and then started back on chemo.  I still have a sore throat on the left side but my onc is not really worried about it.  My echo and EKG came back good.  When i was infused w/the avastin i felt fine.  Well, I have a long day tomorrow and need my beauty rest.

Take care,

Carolyn

sftfemme65

Carolyn,

Glad your first one went great!  I will have my first one on June 2nd.  I just hope they can keep this rash in check.  One other thing I think might be going on is the bladder thing.  I'm beginning to think the avastin might be causing it.  It started hurting again a week after the avastin again.  burning and pain.  No infection.  I wonder if its causing inflammation.  I think I'll end up seeing a urologist. 

Anyways, yesterday I started feeling a little numbness in my toes.  But I figure thats really good considering I have one more to go.

I won't be doing radiation.  I decided to go with my dr and surgeons recomm.  On this matter.  I did tell them that if I had not been receiving the avastin, I would probably have been more insistant on the radiation. 

Anyways hope everyone has a great week!

Teresa

cjw

Ladies,

I am thinking about participating in this trial. One concern I have it that it requires the taxol to be 12 sessions once a week vs. 4 sessions every other week. For any of you that are that far--how tough is it getting the taxol every week? are you able to work/function in day to day life? would you recommend it?

thanks very much

carolynf

Hello all,

Teresa, I still feel fine.  Tired is my only enemy right now and the running nose.  My nose is not as bad as when i first started chemo.  I still keep kleenex w/me at all times.  I went and saw the rad. onc. yesterday and got my markings.  It did not take long at all.  I will do a dry run next week.  Then on June 2nd, I start the real thing.  He said to expect it to take 1/2 hour from changing to getting dressed again.  Not bad but just a pain to do daily!

cjw,  welcome to clinical trial 101 where we all learn a little something from each others treatment.  I think the 12 weeks worked well for me.  I did not have a lot of the side effects that others had.  I do have ugly nails and I think as the weeks goes the taxol is still working its way out of my body.  I think you get a lower dose and your body is on an even keel instead of doing it every 3 weeks.  I worked everyday plus did my military drills every month which meant I worked for 2 straight weeks.  I did however come home and go to bed.  Fatigue is one of the worst se's i have had.  Hope this helps. I think a lot depends on what you have going on in your life.  I am a very busy person w/3 very active kids.  My husband helps w/running them around but I am also the coach for my daughters softball team.  Got to run the kids again.

Take care and good luck.

Carolyn