Clinical Trial E5103

brena · May 2008

Welcome CJW,

Sorry see you need to join the BC journey but your in a great place for support from other woman who are or have been in the same situation. We are always here and support each other through the journey.

The dosage, frequency and chemo combo are unique to this trial. As other woman in this trial join we create a more common support group. Not sure if your reviewed our prior conversation in this thread; Carolyn and Teresa received the Avastin (arm C) and I received the placebo (arm A.) Although Teresa and my SE's were more similar Carolyn's, never know how you are going to be affected, our prior conversation will tell what we have gone through thus far. Would I do it again, yes absolutely! The journey was and is not easy there were days I thought my Onc was trying to kill me with the A/C along with the cancer cells.....but I can't stop. Thus far, all three of us are classified as Triple Negative which puts us in the high risk group for recurrence. Outside of chemo there are no other choices at this time, I would like to think if I have to go through this I would like to make a difference for other woman.

If the only difference between your recommended treatment versus this trial is the Taxel frequency it is doable. The weekly visits could be a hassle if you need to travel a distance but does become part of a routine. Also, you will need to make more frequent future visits to the Onc for follow-up so data can be collected this continues until recurrence or 15 years. In addition, if your in arm C you may choose to continue treatments with the Avastin for an additional 10 cycles as Carolyn and Teresa have done.

I noticed you don't have your bio-markers listed would you tell us a little about yourself. Your decision is not an easy one; however, if you do decide to join the trial please stop back and let us know how your doing. If we can answer any questions please just ask.

brena

brena · May 2008

Carolyn/Teresa,

Happy Memorial Day and hope your relaxing and having many laughs. Today I am by myself preparing for tomorrow's large bbq for family and extended friends. I enjoy the quiet moments and did a very long bike ride.......my time.

The Taxel is beating the crap out of me all the way till the end. While on my cruise the right-thumb that was infected now has become slightly detached soon to fall or need to be cut-off. In addition, the left thumb-nail is now hurting and showing signs of becoming loose, I guess the thumb-nails will soon look like my big toe-nails.

Not sure why this is happening since my last Taxel shot was May 2nd, I thought my system would be near cleaned of Taxel. I will ask the Onc how long to expect the problem with the nails, gosh I wish it would stop. I took the nail polish off all my nails and cut them back only to find 7 nails brown, one black and the thumbnail ready to detach is pure white with the left nail following the same discoloration.

What do your nails look like? Have either of you lost any toe or finger nails? I went to the nail salon and talked with the owner on what could I do to cover the ugly nails without pain and further damage. She smoothed and painted the nails and said that is all that could be done at this time. BUT THEY LOOK SO MUCH BETTER. Had to pick a darker color to cover the brown in the nails and she did have to hold down the thumbnail to smooth it so as not to increase the detachment. Totally gross but all 10 were painted beautifully.

Eye brow and lashes are still getting lighter, can hardly see them. I would think they would start to darken (original color) or grow but nothing.

I went to the family doctor on Thursday because of being abnormally sick for several days this past week. Another antibiotic and more blood drawn (surprise...surprise) The Dr thinks the infection from my thumbnail may have gotten into my bloodstream and made me sick. Outside of that my symptoms were all over the place so no root cause given or necessary follow-up unless the blood work shows something wrong. I got the feeling the doctor was not sure what to check. My regular schedule Onc appointment is Tuesday so I will review my illness with him. Definitely feeling better today.

Teresa,

How is the bladder, still sore? Are you doing a follow-up with a specialist? Glad to hear your scheduled for your Avastin shot, another milestone. Were you able to get your sequence number?

Carolyn,

Are you taking off from work during your rads? Will softball continue into the summer? Hubby better or back to normal?

take care,

brena

cjw · May 2008

Ladies

Thanks for your input. background

I have idc, stage IIa, 2/13 nodes positive, ER+PR+ Her2-, tumor 1.6cm, grade 3. found out 3/6/08. My oncologist thinks this drug is the real deal and can cut risk of recurrence really low (and she is not a cheerleader type). I am having AC and Taxol. I think that is all. had mastectomy, reconstructive all together 4 weeks ago (fab surgeon). I have 3 kids 8-13 and am very active (work, run 4-5 times a week, tennis, ski etc.). Am hoping to continue to run through chemo and am glad to find this board. thanks much

cjw · May 2008

PS I can't figure out how you put the bio markers and your name on your comments, but my name is carol.

sftfemme65 · May 2008

Brena,

my nails are horrible. They are worse on my right hand. My middle and ring finger look whitish yellow, I think there is pus under the nail. and on the left hand the middle finger is like that. I hope the keflex works on it. I'm worried, real worried.

My hair seems to be really coming in now, thank goodness.

Teresa

sftfemme65 · May 2008

Brena,

my nails are horrible. They are worse on my right hand. My middle and ring finger look whitish yellow, I think there is pus under the nail. and on the left hand the middle finger is like that. I hope the keflex works on it. I'm worried, real worried.

My hair seems to be really coming in now, thank goodness.

Teresa

sftfemme65 · May 2008

cjw,

what drug does your onc think is the real deal?

Teresa

brena · May 2008

carol,

Thanks for sharing a little bit of yourself with us. You can put your profile and tumor markers by:

login
click on "my home" at the top
click on "my profile"
you can update all your information and you can click on preferences to receive an email each time someone adds to this thread.

let me know how you make out

You are node positive in which case so you will receive Taxel along with chemo. The only difference will be the frequency of receiving the taxel if you join the trial-again your choice. If your doctor is referring to Avastin as being "the real deal" his thinking is as many others.

Keep in mind you and your doctor will not know if you are receiving Avastin or a Placebo until you are unblinded. Glad to hear your masectomy and reconstruction went well and are finished. How are you feeling?

What date do you need to make a decision on joining the trial?

Exercising will be very difficult during the A/C but possible on most days. You will figure out which days are your better days to exercise, not all will be good days. I walked for 3 miles most days starting three weeks after the start of my A/C, in December, very tough during the cold but kept moving forward. I then moved to riding a bicycle (March) and am now up to 12+ miles daily and believe it is the reason that I have minimal SE's and always good blood counts. I had only one cycle of Taxel postponed due to infection in my toes. Never missed an A/C cycle.

It is to your advantage to continue with your regime but do listen to your body, I am speaking from experience (I got into trouble because I did not listen to mine when I was exhausted.)

take care,

brena

carolynf · May 2008

Good evening ladies,

What a beautiful Memorial Day weekend it was. Brena, my nails are discolored STILL but have not lost any. My onc says I may lose 1 or more. Don't know. My toenails look much better than my fingernails. Its almost like the skin underneath is pushing the nail up. I am still fatigued. But it may be the schedule i am on. This week, ball games every night, Sat morning and clinic on Sunday! I am still working fulltime. A friend of mine started rads and had a mild sunburn on the 3rd time. She is fair skinned vs me. I tan very easily. I don't know if that has anything to do w/rads. My husband is still going to therapy for his hand and back. He is still having a hard time sitting for long periods. Have you or Teresa had a sore throat on one side?? I've had one for quite some time but my onc is not worried about it. I am also having a sore back and thumb joint and top of foot is sore. I have very little hairs for my eyebrows and I vaguely feel eyelashes. I guess those are the last ones to grow back. My hair is growing fast. It has darkened a bit but the white is still there! Everyone tells me they like my hair short. This is a little TOOOOOO short. Well, my body is telling me to go to bed and that's what I plan on doing. Teresa, I am glad your hair is coming in. It does help keep the heat in somewhat.

Cheers,

Carolyn

brena · May 2008

Carolyn,

Nice to hear from you, and yes a beautiful weekend and a much needed long one for all of us. It appears all three of us are experiencing one of many Taxel SE's with our nails. I am glad to know that it is not just me and we are going through this together. My right thumbnail is holding on dearly but not sure for how long and it looks so pretty! Left thumbnail not sure on its longevity, but have high hopes. Carolyn you are correct the toenails look much better than the nails, and I did not realzie that until I removed the nail polish.

Sore throat is a definite but think it is due to allergies which are worse than any year I can recall. Occasional blood in the nose but still decreasing each passing week, always thought it was from the Avastin but guess it was the A/C and Taxel. I talked with the Onc on how half of my head has hair (trimmed twice to match half that has not grown)...replied give it time. All eyebrows gone, whats with that they should be showing some life or at least a little perkiness. Found about 5 hairs on my legs but that is all the hair that has grown since May 2nd (last shot.) Someone at work suggested I try some vitamin B to stimulate nail and hair growth, either of you tried this?

Carolyn, it sounds like your falling apart may be time for a little vacation or a long weekend for just you? Hang in there lady you are doing great Wink . I am glad your hubby is doing therapy although not the easiest when you expect immediate results. Maybe he needs a ride on the HD after recovery.

I have been tanning at the salon for about two weeks (shh) and I am being careful about not overdoing it. The tan covers most of the red on my hands, still there but others can't really tell. I am fair skin so I hope tanning reduces the burn on the breast from the rads, setup is June 3rd (no rads until mid June Smile Smile .) I will post that question on the rads thread to find out if tanning is permitted and if it might reduce the rads burn.

Teresa, how is your rash? is it still spreading? You receive your last Taxel shot this week correct? Have you had success with the Keflex?

Count down has begun for the official release of the children for the summer, are you guys ready?

Dentist tomorrow to have my back tooth removed, dexa and bone scan next week which are being done in prep for my next trial S0307. Gyn appointment next week as a follow-up to an abnormal pap smear last year, don't think anything serious just need to follow through with unfinished business. Then on I go to start rads. I have been reading the rads thread to gain a little info on what to expect and be prepared.

I am feeling better physically but still very much fatigued, still not sleeping without pills (hate them) are either of you still having problems sleeping enough hours to feel refreshed? Only taking when absolutely need sleep.

I am alive and on my road to recovery from BC and glad to be making the journey with you two ladies! Maybe CJW will stop back and tell us she too will join the trial and our chat.

Carolyn, was there a mention of getting a mammo prior to you starting rads?

take care and talk soon,

brena

carolynf · May 2008

You are right Brena. Sounds like we are all in the same boat w/our SE's. Hubby is still riding the HD to work on and off. I finally took mine out for a ride on Saturday after much coaching from my hubby and friends. I am glad i did it. It was a good time. BTW I laid by the pool Sunday (no kids) and took my top off and of course put on sunscreen to prepare this puppy for rads. I did get a little red! Wasn't out there for long 1/2hr or so...Once I start Rads I was told you cannot get any sun there. Kids are already driving me crazy. I will get 1 full week of kids at camp. When you get tattooed for the rads, it's like a bee sting again. What is it w/shots and such going thru chemo feels like bee stings? I tried sleeping w/out pills and kept my hubby up all night. Onc says to stay on them while going thru this treatment. He says I won't be on them forever, just for the time being. So YES i am still on lorazapam. I take 2 every night and sleep pretty good. I am also fatigued from everything. When I went to the appt for the rads there was nothing in regards to having another mammo. BUT i did have to bring all my mammo slides w/me. I am glad that I am on this journey w/you ladies. It's nice to share w/others who know how we actually feel. It sucks that we have to go thru it but we are Women hear me roar! In regards to Vit B, I was taking vit b12 2500mg when I was doing chemo. I haven't been taking it recently because i am getting tired of taking pills. That is strange w/your hair growth. I can probably spike the top but am still trying to figure out if i want to dye it at this time because I am getting sick of the grey/white look. The front part is kinda a mousy brown color. I think if I do something to blend it all I might look/feel younger. Kids are wanting blonde. We will see.

Take care and get some more vit D Cool just don't forget the glasses!

Carolyn

carolynf · May 2008

You are right Brena. Sounds like we are all in the same boat w/our SE's. Hubby is still riding the HD to work on and off. I finally took mine out for a ride on Saturday after much coaching from my hubby and friends. I am glad i did it. It was a good time. BTW I laid by the pool Sunday (no kids) and took my top off and of course put on sunscreen to prepare this puppy for rads. I did get a little red! Wasn't out there for long 1/2hr or so...Once I start Rads I was told you cannot get any sun there. Kids are already driving me crazy. I will get 1 full week of kids at camp. When you get tattooed for the rads, it's like a bee sting again. What is it w/shots and such going thru chemo feels like bee stings? I tried sleeping w/out pills and kept my hubby up all night. Onc says to stay on them while going thru this treatment. He says I won't be on them forever, just for the time being. So YES i am still on lorazapam. I take 2 every night and sleep pretty good. I am also fatigued from everything. When I went to the appt for the rads there was nothing in regards to having another mammo. BUT i did have to bring all my mammo slides w/me. I am glad that I am on this journey w/you ladies. It's nice to share w/others who know how we actually feel. It sucks that we have to go thru it but we are Women hear me roar! In regards to Vit B, I was taking vit b12 2500mg when I was doing chemo. I haven't been taking it recently because i am getting tired of taking pills. That is strange w/your hair growth. I can probably spike the top but am still trying to figure out if i want to dye it at this time because I am getting sick of the grey/white look. The front part is kinda a mousy brown color. I think if I do something to blend it all I might look/feel younger. Kids are wanting blonde. We will see.

Take care and get some more vit D Cool just don't forget the glasses!

Carolyn

sftfemme65 · June 2008

Hi Everyone,

Well, I had my first Avastin today. This was my first treatment without ativan, I was a little nervous which is silly. I had a nice cry tonight. All because of a nose bleed. I'm just so ready to feel better, get my life back and then my nose bled and i felt fatigued today so I guess I got down.

My family and friends threw me a surprise "end of chemo" party, of course I'm doing avastin they didn't know that when they planned it.

I hope every one else is doing great.

Teresa

cjw · June 2008

Dear all

Thanks for letting me join the conversation. I am glad to have found this mini group.

I will be starting the avastin study along with the AC/Taxol regime next week (in Chicago). Quick summary--mammogram in March, found small tumor but had addl calcifications, biopsy, which led to mastectomy recommendation. Had mast/reconstruction all at once on April 17 and feel great (can work, running 5 miles, etc.). Chemo starts next week so am a bit nervous. Met with oncology nurse today to go over all details and see the place.

Carol

cjw · June 2008

PS

I had said before that my oncologist thinks avastin is the "real deal"--she said that she thinks it will become the standard of care for early stage breast cancer in the next few years.

brena · June 2008

Carolyn,

So glad to hear u took that ride, totally jealous. Make time for yourself even if it is the little things. Which week do the kids go to camp? What day is your first radiation treatment? Maybe something wild and crazy with your hair?

There is comfort in knowing others have the same problem with sleeping, I feel like I should be back to "normal" with sleeping, eating and thinking etc. and not even close on some of those.

Went to my rads setup today, gosh I should of taken a Xanex before I went. I wasn't the nicest patient they had, couldn't get through it and out of there fast enough!!! I had flash backs of the cartoon "Gumby" as I was taped down, plastered across the boobs, twisted, arm went numb while above the head, everything started to fall asleep, etc.......I was willing to trade 6 more weeks of Taxel in exchange for being released from my radiation sentence. Guess what,,,I get to go back next week for verification and maybe the first round of radiation (per our protocol we must start within 6 weeks and next week is the 6th week.)

I will be taking some meds before I go to next weeks session for all of our sakes.

I never loose my cool, get freaked out (not even with chemo), hell I walked the streets of Egypt by myself without anxiety or fear. Maybe my insurance will cover visits with the shrink? I figured out why I feel the way I do about rads but am hoping it will subside after actually starting the session. I wanted to get off the table (untape myself) and just leave, so so tempted but knew it is what I had to do. I even left without submitting my short-term disability paperwork, guess it will hold until next week. Oh yes I was told no tanning and no chlorine water.

Tomorrow's agenda: Bone and Dexa scan and I get to end the day with a Gyno visit...wha hoooo!

Teresa,

Glad you are getting the Avastin, hang in there kiddo as I know those SE will get you coming and going but you need the meds and you know it. Talk to us when your feeling that way, we will always be here for you and truly understand.

What a wonderful surprise from the family and friends, they sound like they are a great support group. Have another party after completing the Avastin in November just another great reason to celebrate.

The Relay for Life event is being held in my community this Friday, a Luminaria will be lit in memory of your mom. The local Cancer Society held a wonderful dinner in honor of Cancer survivors, my daughter accompanied me. There must of been around 80 people from the area who attended of which I was the only bald headed woman (men were excluded.)

I so wanted to walk around the room and do a hair check on some of those woman, I just knew they were wearing. My daughter wouldn't let me do the check, said she would leave if I did.

We had a good time at the dinner and I also joined a group for Friday night event, am looking forward to it; however, will be a long night into the am hours (no problem staying awake.)

both of you take care,

I am exhausted mentally and physically (sleeping pill)

brena

brena · June 2008

Carol,

Welcome aboard and just to let you know you are making a wonderful contribution to research and the many questions that BC derives. Your participation will help with some of those answers, you are in an elite group as many woman decide against participating in trials for many reasons and some cannot due to other reasons.

I believe there are two other woman at my Onc's office who are also joining this trial and I hope to get them and future woman on this thread. The more support the better for all involved.

Carolyn, Teresa and me have completed the chemo requirement of this trial; however, Carolyn and Teresa are continuing with the Avastin shots (10) as they drew arm C. I have completed the chemo but drew arm A the placebo so I am finished with the chemo and am now going on with rads and another trial S0307. Carolyn is also going through rads along with the Avastin. Regardless of the arm you draw you will be monitored and compared to others who have taken the Avastin (still part of the research team.)

I hope we can provide you a smoother journey as a group, keep in touch and let us know what we can do to help. Thank you for sharing your background with us and glad to see you were able to post your biomarker information.

take care,

brena

carolynf · June 2008

Good Morning,

Well, I have now completed 2 rads. It's not bad at all (so far). I know the undressing part will get old once summer really hits. I am still taking pills to sleep. That part hasn't gone away but I actually think I am starting to get a little more energy back. I have my rads everyday at 3:20pm so I can go to work and drive straight to the cancer center. Brena, you said you got your boobs plastered? They only gave me the tattooes. I do get a little goosebumps on the back of my head when I get radiated....but only 31 more to go!! Got to run. WIll write more later...

Carolyn

brena · June 2008

Carolyn,

Glad you are getting some energy, will you be working every day during rads?

I was told that my appointments will be in the am as that is when they perform rads. If I get before 9am I will be going in my pajamas and slippers, at least I won't have to worry about fixing my hair. Just talking about it makes me nauseas. My next appointment is scheduled for June 11 at 2pm for verification maybe there will be a shrink nearby.

While I was laying on the table, not moving, the tech lied a wet piece of plaster (approx. 4 foot length strip) across my boobs centered it and hung the remainder over the edge of the table. When the plaster dried they carefully removed it and left the room, not sure what it will be used for but will ask next week. Maybe to ensure both boobs are in the same position, hell maybe they are hanging the damn thing on a wall somewhere.

I would ask what your summer plans are but I already know what you will be doing.

I completed my dexa and bone scan today and even the Gyno visit, if all tests went well my intention for the next 8 weeks is to have no one poke, squeeze, feel, or touch my body outside of my Onc appointment and getting my boob burnt unless my life depends on the test being performed! My mammo is due in August but again it falls into the category of having my boob squeezed and touched so I will pass on this test until all is healed.

If you ladies don't mind I would like to ask your age, I just turned 46 in May.

Again I am mentally and physically exhausted even after having two cups of coffee and I havn't even added a sleeping pill to the formula. I hope I am not getting sick again, maybe lack of sleep is catching up with me. I will hang around on the boards for a little while before calling it a night.

take care,

carolynf · June 2008

Good morning,

Brena, sounds like your plaster may be what I saw lying on the floor one day at the center but it was a cast from shoulder down to below boobs... I will have to ask today when I go for #4 rads. BTW I will be 46 on Oct 3rd this year. Yesterday after rads I went home to bed. I was exhausted! I slept for 2 hours. I mean i was out of it. Got up and made a smoothie and gave my love a haircut. We have a wedding to go to Friday afternoon and I have a bridal shower on Saturday not to mention my daughters softball game at 8:30 Sat morning. I probably have something Sat night that I am forgetting. Life is still busy. I plan on working as much as I can during Rads. If I start getting more tired, I will keep dropping back my hours. I have enought time on the books to take off from work til August but don't want to use my time if I don't have to. I am taking Friday off. I changed my time to 9am for rads due to the wedding. Next Monday, I have chemo in the morning and rads in the afternoon. So i will work some hours from home. Depending on how I feel. There is a tele conference that is 2 hours that I could lie in bed and participate in my pjs and still get paid....One thing about rads, I dont' know if you like to swim but I do. I have an inground pool which i like to float in but also do laps when i can. The nurse told me that the chlorine can dry the area of the breast out and peel etc. She gave me some creme to alleviate this should it happen. If it gets worse then i would just have to stop swimming. So, I will see what Happens. Also need to make sure area is covered while swimming. I have a nike tanktini that is high cut on the top which covers all. That will be my suit pretty much this summer. I am already starting my countdown on the rads. Its nothing compared to chemo so far. I think it takes a whole 1/2 hr if that long. That includes undressing, rads, and redressing. I am still taking pills at night to sleep but will be trying to knock it down to 1 again. I finally painted my toenails. they look great. My fingernails look horrible but I don't want to paint them yet. I want to keep a watch on them....maybe a clear coat might help. My daughter says they look GROSS. Nice huh. My nose is getting better Sealed Don't stress about the rads. Believe me after what we've been thru w/chemo its a walk in the park. Well, enjoy your time w/out the poking and prodding. I am so used to it that my husband even prodded my breast last night and I had to prod him back!

Carol, Don't stress about the chemo. It will pass quickly. I stressed about the first one and walked out saying...Is that it? It will get more taxing on the body as you go on but keeping busy but not too much helps you mentally and physically deal with it. Good luck and relax. Bring a good book/friend to keep you entertained. I don't recommend husbands if they are like mine and can add a little stress because they show their worry on their face. My mom was my stone. Take care,

Carolyn

S3K5 · June 2008

Hi,

I just had my first chemo on 30th May (A+C+ Avastin clinical trial). From the side effects I have so far, I think I may be getting the real drug. I also started to cough a lot since yesterday- I was wondering if anyone else had problems with upper respiratory tract?

Hopefully I will be able to deal with the side effects a little better the next time!

Desi.

brena · June 2008

Carolyn,

You are starting to write books just like me and love to hear from you. Talk more tonight as I will be home around 8pm ET.

Welcome Desi,

I am from Salem County NJ, please tell us a little about yourself including your diagnosis, tumor markers etc. Teresa and Carolyn are the other two who are also in this trial. I am sure they will chime in very shortly to welcome you. There is a place when you registered where you could put your stats if you want, reference mine.

thanks

talk tonight,

brena · June 2008

Ladies,

Will be leaving work very shortly for the Relay for Life event, will not be on tonight to chat. I am taking a blanket and pillow as I am already tired, didn't sleep well last night (no pills.) Can't remember when the last time I slept under the stars.

More fingernail beds are hurting, are you guys still having pain in the nails? The cost of getting my nails done is getting cheaper with each nail that falls off.

I will check in tomorrow, you ladies have a great night.

happy Friday

carolynf · June 2008

Good evening ladies,

Welcome, Desi. When I started this journey I too had coughing for the first month or two. It wasn't bad enough to be put on meds. Make sure you are drinking plenty of water/fluids. Also, if your body tells you to nap...nap! If you can get some exercise then that's great. i started exercising but ended up quiting due to tiredness and winter! SNOW! COLD! I started chemo Dec 17th and finished May 12th. (A/C dd, taxol 1x wk for 12 wks). I am presently going on my 2nd week of radiation. Monday is my 2nd chemo on Arm D...8 more to go! The avastin is nothing compared to the other 2 drugs SO FAR.

And yes Brena, I am getting to be long winded. Good luck on the Relay for Life. I was going to do it this year but as I said before...3 kids and baseball/sball keeps me busy. Just had 3 days of travel soccer try outs for 2 of them. I had a wedding yesterday afternoon at the gazebo on the beach and it was freezing, maybe not freezing but cold and breezy. Thank goodness the reception was inside. Today was at least 90 degrees and i had a baseball/sofball and bridal shower! Tomorrow is drill for military! I am taking Monday off from work because my first appt is at 9am(chemo) and my rads are at 3:20 and on top of that its my youngest's bday...he will be 10 and then I have a baseball and softball game that night. So I might be able to relax inbetween my drs appts. Talking about Nails...mine are still ugly (finger) but are intact. My toenails are fine. I do get a little tingly from the rads (I think). It might of been me in the sun. I let the older women sick in the shade today. Well, i need to hydrate more. I think I lost a lot of fluid today and I havent put enough back in.

Take care

Carolyn

carolynf · June 2008

Teresa...Where are you? Hope you are doing ok. You sounded tired on your last email. I am glad for the support your friends and family are giving you. My hubby is thinking about throwing a party after I am done rads. I hope not to be tired (positive thinking). Keep the faith.

Carolyn

cjw · June 2008

Ladies

Thanks for the notes and sorry been out of touch. Have been busy with more blood work etc. getting ready for chemo to start this thursday. I also went to a holistic place that does nutritional and supplements (although I am staying at my academic medical center for the chemo). I really look forward to having this group to bounce thoughts from. The oncologist at the holistic place also spoke really highly of the avastin and feels like it is absolutely the right way to go. and brena--we are almost exactly the same age. I turned 46 on June 2 and have 3 girls--13, 11 and 8--several club soccer players and an Irish dancer. How weird that at least 3 of us are exactly 46. And why are you all having radiation--I don't think I am. At least so far, they have told me I am not.

Has anyone else looked into the holistic/complementary medicine (supplements etc.)

all the best

Carol

cjw · June 2008

Ladies

Thanks for the notes and sorry been out of touch. Have been busy with more blood work etc. getting ready for chemo to start this thursday. I also went to a holistic place that does nutritional and supplements (although I am staying at my academic medical center for the chemo). I really look forward to having this group to bounce thoughts from. The oncologist at the holistic place also spoke really highly of the avastin and feels like it is absolutely the right way to go. and brena--we are almost exactly the same age. I turned 46 on June 2 and have 3 girls--13, 11 and 8--several club soccer players and an Irish dancer. How weird that at least 3 of us are exactly 46. And why are you all having radiation--I don't think I am. At least so far, they have told me I am not.

Has anyone else looked into the holistic/complementary medicine (supplements etc.)

all the best

Carol

carolynf · June 2008

Carol,

That is very strange on age...In regards to holistic meds, my brother has been reading a lot about cancer (since I was diagnosed) and letting me know some of the findings. My onc. is great. I always ask him if its ok to take any supplements. Right now i take flaxseed pill or oil-daily, acety-l-cartinine, milkthistle, noni juice, caltrate, b12, and I think that is it...I did try essiac tea and did not like the taste. I might try it again. I would like to try accupunture but have such a busy schedule that I will look into it after ball season which is in another 1 1/2 weeks. Then I will only be coaching Allstars! In regards to radiation, they told me before I even knew i was going to have to do chemo. I had my 2nd avastin and it went good. No fatigue, as a matter of fact, I feel i had more energy today. Not sure if it was the combo of chemo/rads? Well, my bed is calling me. I have to go back to work tomorrow. It will be a short week but a busy one.

Take care,

Carolyn

sftfemme65 · June 2008

Hi Ladies,

Sorry I have been so long posting. I have been trying to get my strength back and I also just bought a new house so I'm trying to move. I close on the sale of the old house on the 16th so I am trying to get everything done this week. My new house has a big in ground pool, which will be great this summer.

I had a CT scan of my chest 2 weeks ago with an echo of my heart. Everything came back good....what a relief. My nails are still nasty but so far they haven't fallen off, but as nasty as they are I don't know that its a good thing or not. I still am having body aches, like with the taxol but its been 2 weeks...does anyone else feel this way.

My hair is coming back slowly but oh my its white....btw I'm 42, will be 43 in November....definitely too young to be totally gray so I wish it would hurry and grow so I can color it.

I have treatment again on the 23rd. I was considering putting it off a week because I'm going to las vegas on that day for 3 days. Of course, I could just take treatment and go. What do you guys think? I'm still taking the ativan to sleep but I have been trying to only take one a night now.

Oh yea, the doc gave me 10mg of steriods instead of the 20 mg you get with the taxol, with my avastin because of the rash, to help control it until next treatment....the rash is basically gone. Still marks from it but rash wise its gone. So I guess it must of been from the taxol and not the avastin after all. I'm just happy that its going away.

One of my nurses told me to try emu oil for my nails, any thoughts on that?

Oh and welcome carol and desi!

Talk to you guys soon,

Teresa

S3K5 · June 2008

Hi,

Thanks to all of you - Brena,Carol,Teresa and Carolyn. I am so glad I can talk to someone about the clinical trial (I don't know any one else on it, at my center). At this point, I don't know if I am getting the real drug or a placebo.

My only side effect is the persistent cough. I haven't slept more than 4 hours since last week. The onco sent me to my regular PCP. She gave me some antihistamines - nothing works. I am so tired of coughing!!

My next (2nd) treatment is on Friday the 13th. I am getting dose dense A/C+Avastin/Placebo (every 14 days) followed by 12 weekly doses of Taxol.

Teresa, enjoy your trip to Las Vegas! I don't know if your treatment can wait another few days - if it can, then you'll enjoy the trip more. About the nails, I read somewhere that 'tea tree oil' has helped with the nail damage.

Carolyn, is it okay to take the supplements while on chemo? My onco told me to talk to the dietician. I think I will call her tomorrow.

Take care everyone,

Desi.

Clinical Trial E5103

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