Clinical Trial E5103

brena · December 2008

Carolyn,

My port has been removed and am healing quite well, I have thoughts of when it was put in and the pain is similar. Mentally I feel relief in knowing it is out, although I did ask to have the port as a souvenir. Was told no because they always send it to the pathology department, not sure what they want with it. I had the port removed in the hospital, scheduled for 10am actually performed at 12p released at 2p and went directly to work. I had to have someone pick me up because they would not release me on my own. Still sore and am suppose to go back to surgeon on Jan 2nd for my last and final visit, with prayers that I never need his service again.

I will need to get bloodwork every 3 months for the next 2.5yrs for my trial using clodronate. I will need to coordinate all doctor request for bloodwork to be done at the same time. I am not getting anything more done than I ABSOLUTELY have to.

I arrived at my sisters in Texas a few hours ago and am visiting with my dad. The weather is warm but no sun yet, looking for some vitamin D. If I don't get enough I may just have to book a trip to the Caribbean.

I hope your family is having a wonderful holiday and are enjoying time together,

busqueen · December 2008

Merry Christmas to all you brave ladies.:-) May the holiday season remind us of what we're fighting for.

Amanda, I'm glad it's so far, so good for you. I'm very familiar with the "icky" feeling. Yesterday {day 6} I started with some nose bleeds. Nothing major, just there when I blow. I understand that's a pretty typical SE of the Avastin. I'm still having a hard time figuring out what to eat also, I know I'm not getting enough protein, but nothing appeals to me. Definitely not a normal thing for me! Tongue out I remember when my mom when through chemo she got so upset because it took away her taste for chocolate. Now I understand! I sat in the parking lot at Target yesterday and tried to want mcdonald's. It just wasn't there. Sigh. Cry I feel like I've lost my drug of choice!LOL

I hope that everybody here has a blessed day.

brena · December 2008

Ladies,

One comment from a member of the Placebo group, NO sinus trouble here! Probably the only advantage of not receiving the Avastin. The Taxol and A/C did do some sinus damage but much better after several months.

Could some of the continued symptom be do to the dryer air since your probably using the heater, wood stove, etc? Maybe add some moisture to your home air, vaporizer?

take care and happy holiday to you and your families,

S3K5 · December 2008

Hi Ladies,

Just caught up with the latest posts.

Brena, glad to know that your port is out. It must be one big relief - closed chapter!! How is your energy level?

Joanne, sorry to hear about the pain in the toes and fingers. I have the same thing - was told this is due to Taxol. I have been keeping the toes covered with warm booties all the time. Keep the blood circulating and wear gloves when possible for the fingers - this definitely helps. It will gradually diminish.

Carolyn and Teresa - I know what you are going thru with sinus problems! Mine is the same too - has been bothering me since three months. But I think it is definitely becoming more tolerable. I use saline rinse - which clears the nasal passages. I stopped taking decongesants, since they didn't help. The ENT has given me antibiotic cream (sterile Bactoban) to apply to the nasal passage - this reduces the pain and doesn't dry out the nasal passage.I was also told that by blowing the nose hard, I am rupturing the tiny blood vessels in the nose which contributes to more nose bleeds!! (I can't breathe if I don't blow!!)

Carolyn, how long has it been since you stopped avastin?

I am almost done with radiation - two more boosts to go. The skin has started to peel but the steroid cream helps.

Take care every one. Have a happy holiday and a Happier New Year !!

Desi.

cjh · December 2008

Hi All,

Had seventh taxol today, doing OK, but loosing finger nails daily. Tea tree oil seems to help ward off any infections though. My nails, fingers and toes were very sore two weeks ago and my doc suggested B6 vitamin and the nurse said to add L-Glutamin ( supplement). I took both and two days later the pain and numbing sensation were gone and have not returned. Don't know which one worked...but staying with both of them

Oh, and my DIL swears by the Netti pot for her sinus pain and fullness. She puts warm water and a special salt she gets on line in the Netti pot then pours the pot into her sinuses in the morning. She said it is a little weird to try it, but reports people get hooked on it the first time due to the relief it brings.

I so do not miss the "icky" feeling of the A/C. Taxol has given me most of my energy back and that is even after I had them decrease my steroids to nearly nothing (retained water in my face from the roids).

Oh Brena I am # 51 in the trial and hope to get unblinded in three weeks. I will let you know the results. Hopefully others will be able to find out their trial number and report to you so you can add to the great list you started. If the trial is assigned sequentially (versus random), I figured I am in arm C based on the limited numbers people sent to you.

Happy holidays to all!

CJ

sftfemme65 · December 2008

CJ I have tried the netti pot. I still use it but it hasn't helped much. I saw my PCP today, he is having me use a nasal antihyst in the morning, nasal steriod at night and another antibiotic....I'm not hopeful lol.

Teresa

brena · December 2008

Cj,

Thanks for finding out what number you are in the trial, i think Teresa was 29 but will check when I get home as I am still in Texas until Jan 1. I hope you are in arm C as you think, do you have an unveiling date?

take care lady,

brena · December 2008

Carolyn and Teresa,

Have you had your follow-up mammo? if so what were your results? I will try to recall mine since I don't have it with me, two area's of concern which the radiologist wants another mammo in 6 months. First, there is residual disease in the area of my lumpectomy I didn't give it much thought until I googled it and realized it means there are cancer cells left after the chemo and rads and their presence puts me at a higher risk for relapse. I cannot remember what the 2nd concern was but will post when I return home. I am sharing this with everyone so you can ask the necessary question if you should have similar findings and in our world all does not go as planned or wished.

Funny thing though, the radiologist sent me by mail a notice stating he wanted a follow up mammo in 6 months and a detail report was sent to my onc but all is well. When I went to the onc he had a one page report with all this information that was not given to me with the original findings received in the mail. Obviously the onc gave me a copy of the report, he actually already had a copy made prior to my visit.

brena · December 2008

Busqueen,

Sorry to hear you are having a difficult time with finding food that has taste and appealing, been there with the chocolate and that was probably the most depressing. Wasn't even worth eating couldn't enjoy, although good for the waist line. I tried new foods, spicy and authentic as something different and found the spicy food that I would of otherwise never eaten had the most taste that I could enjoy. I mixed foods of weird concoctions to get the necessary proteins and a tolerable taste. Some of those concoctions are still now prepared, go figure. Keep trying different mixtures because you need to keep your strength.......Mcdees does not have the protein you need. Is there someone in your support group who wouldn't mine preparing you a variety of dishes to help stimulate your taste buds?

nibble on small foods if you need to, keep trying

brena · December 2008

Teresa,

You won a cruise, where to and when? you lucky lady!!! Have you made a decision on when to have your reconstruction...before or after both of your cruises?

your being smiled upon,

brena · December 2008

U2av8r,

How are you making out? any update on your chosen path to address the BC? Hope you had a great holiday with little thoughts on this disease. Stop in and let us know how things are going.

friends forever,

brena · December 2008

Teresa,

Have you given any thought to traveling internationaly in 2009? if so what are your top 3 picks?

smiles

brena · December 2008

Ladies making a difference for future woman,

The unblind tally is as follows:

Arm A=Brena (#5), Kara

Arm B=Jen, Desi, Erika, Alicia

Arm C=Carolyn (#6), Teresa (#29), Harbin, Carol

brena · December 2008

Alicia,

Do you know what your sequence number was for this trial, I will add you to our list of those unblinded. Wishing you well in your recovery process.

healthy days

sftfemme65 · December 2008

Brena,

Hi there. Ok first about the mammos, I just had one last month but prior to that I had 2 different breast MRI's because honestly I dont trust the mammos. Since it missed my original bc. I have to tell you I'm concerned about what you just said, shouldn't they do another lumpectomy or something to remove that area? I dont think a wait and see thing is good...especially with trip neg, grade 3.

I will be having my surgery in between the cruises. I still feel horrible with my sinus's and I hope it gets better. I am having a bad time right now, I hate this and I wish it would get better already.

I would love to go to Italy(top choice), Scotland, Australia. But I'm pretty open except for the middle east (too dang hot lol) and Japan (I would starve lol)

How about you?

Teresa

sftfemme65 · December 2008

Carolyn,

Could you tell me what kind of issues you are having with your sinus's...any pain? pressure? issues with your ears?

Thanks

Teresa

busqueen · December 2008

Brena, thank you for your suggestions. Now that I have entered my second week out the eating thing is getting better, and I'm already planning better for that first week after my next chemo on 1/9. Tomorrow I go for my blood counts. I have an important 'date' with my daughter on Wednesday to go see "White Christmas," so I'm just hoping I'll be feeling half way decent.:-)

carolynf · December 2008

Hi ladies,

Sorry I haven't posted lately. With the holidays and friends and things happening! My mother in law went into the hospital the day after Christmas and was incoherent for 2 days. They did a blood transfusion and that didn't really do anything but give her new blood. I hate to say it but I think she has dementia. The wierd part is it happened overnight. She will be turning 90 in March and has been in great health her whole life. Never swore, drank or smoked. Anyways, we hope the shrink can get her back to some normallacy.

Teresa,

My sinuis' are still hurting. I have only gotten 1 bad nose bleed in a long time and that was yesterday. I use the saline solution and was doing the neti bottle and still pressure can be a pain. Today I had a wicked headache or more of a migraine. I ended up taking 3 ibuprofen which didn't work. A friend of mine at my daughters bball game gave me 2 extra strength excedrin which seemed to do the trick. My nose is still running. I don't think its running as much or maybe I am just so used to it who "nose". Cute huh! BTW, How did you win a cruise??? I also get pressure that affects my ears...

brendafromflorida · December 2008

Hi everyone, I am in this trial also, but haven't started my treatments yet. So this is what I may be looking at? I am glad to have found this thread. Thank you Brena for starting this.

I had modified radical of the right breast on 11/11. Port inserted in my arm on 12/11. I was supposed to have started my treatment Friday, 12/26 but the Avastin didn't come in. I am waiting to hear now when I will start. I am a bit frustrated today as I was expecting a call from the research nurse. My regular one is on vacation until Monday and I don't know who is covering. Tomorrow I will just call there and keep dialing extensions until someone answers. I had myself all prepared for Friday and it was almost a letdown when they called to cancel. Not that I am excited to start this, but in a way I guess I am in a bit of a rush to get it going.

It seems like it will be easy to tell if I am actually receiving the Avastin based on the posts I have read. Thanks for all the good info. This site is a GODSEND. I love it.

carolynf · December 2008

Hi Brena,

I am sorry to hear your mammo news. I will send good ""vibes"" your way. I am glad your port is healing. I can't wait to get mine out. I met w/a trainer today at the gym. Its a program thru the hospital "recovery from cancer" to help get you back to "Norm". I felt good after going over the cardio machines. After the port comes out we will work on the upper body. I still do not have the energy I used to have. I am hoping w/the workouts that it will slowly return. I do not go back to work til the 5th. Well, I think its time to rehydrate. I am feeling a little thirsty! I will be getting my next mammo beginning of Feb. I can't believe its just around the corner!

BerkeleyKim · December 2008

Hi all:

Thanks to all who've written on this topic. It helped me decide in early Dec to do the trial. Will start tomorrow. I'm nervous about the SEs, especially since I've had borderline high blood pressure recently (could it be the stress??) and I bruise fairly easily. But all the comments here have helped me feel positive it's the right thing to do.

Brenda--good luck in reaching someone. This is a hard time of year to go through this for many reasons. My onc is out of town for 3 weeks, but my nurse is here.

kim

brena · December 2008

Theresa,

Were your mammo and mri normal? did you receive some feedback other than the traditional note in the mail from the radiologist? Again, my onc received a detailed diagnosis but I did not just the request for another in 6 months.

Have you considered consulting a specialist for your sinus problem? I will search for some prices and dates for Scotland and Italy and will get back with you, you do the same.

take care and sending you some love

brena · December 2008

Brendafromflorida and BerkeleyKim,

Welcome to our group and we sure are very glad you decided to join us and our commitment to making a positive contribution.

If you wouldn't mind sharing a little information about yourself it would help us get to know you a little better. Most of us have posted some personal information in earlier post but wouldn't mind posting it again if you havn't read the earlier posts.You both have made a very difficult decision but it will change your and the lives of other woman! You are both in an elite group of heroes... thank you for joining us,

sftfemme65 · December 2008

Brena,

I actually get a call on all my test the next day from my PCP nurse or him. They notify me before the onc even knows...I love them. Mammo was fine...supposably but like I said, I dont trust them....MRI of breast was fine too. Honestly I can not wait to have this other breast removed.

I think I am going to go see an ENT about this. I will start checking prices too!

Carolyn---oh I am sorry you are having the same issues I am but it makes me feel at least like its definitely due to the avastin.

Brendafromflorida and BerkeleyKim welcome to the group!!!!

Teresa

cjw · December 2008

Hi all,

Its Carol--haven't posted in a long time but check the site every few days. Thanks for all you diligent posters--it does help. For the new ones-I am on the Arm C continuing avastin and the nose stuff is clearing up the further away from the taxol I get (i have had 2 of the additional avastins). I have also been doing radiation and its not too bad, but it does get old going every day, particularly with the chicago weather we have been having.

Brena-I agree with Teresa--I would get another opinon on "residual cells left"--it does seem like you would want them gone.

Brenda and Kim--good luck with your treatment--I think you'll find the avastin side effects no worse than basic chemo side effects, which for me the worst were weight loss and no appetite. My blood counts did drop with the taxol which is sort of unusual, so I ended up having to have the shots through out the taxol to boost my counts.

happy new year all--I am sure we are all ready to leave 2008 behind!

brena · December 2008

Carolyn,

How is your radiated breast? trying to figure out if mine is normal or taking extra long to heal. My radiated breast is still sore at times, swollen and looks a little pitted, the bottom of the breast (5'oclock) sticks out as if it is scar tissue and is thick/hard (not sore.) This spot is where the edema started, Onc felt the area and said he didn't feel anything. Stated it may take a while for the breast to heal, not sure what to expect.If memory serves me the mammo stated the breast has extensive skin thickening probably from chemo and radiation. I havn't been back to the radiologist and no intention of returning so thought you might tell me how your doing.

thinking of you,

brena · December 2008

cjw,

Thanks for your kind thoughts on my booooooooob, just tired of it all. I will give some thought to my next step with the mammo results. I am tickled pink to know your doing pretty good with the Avastin...keep going!

take care lady,

BerkeleyKim · December 2008

Hi Brena:

Thanks for putting this together. A bit about me: Had a neg. mammogram in a string of neg. mammograms, this last June. Went in for a pap smear early Sept. and Nurse practitioner found a very small lump. Saw surgeon, who sent me in for MRI, which found 2 other tumors--on 4 cm (no one felt that!). Surgery 11-14, with 3+ lymphs. Got clean margins--I'd hope so with a mastectomy .Range of arm motion still coming back--one of the more irritating things for me.

I'm 52, 3 kids (21, 19, 14), and started a new career last year as a spec. ed teacher after being in publishing 25 years. Hadn't penciled this in, and now I see the fight as my job.

Had first chemo yesterday, some nausea at night. Neulasta shot today. Trying L-glutamine for tummy and intestines, cuz I hear Avastin can be hard the GI system. It was hard for me to decide to do the trial. Kinda felt damned if I do, damned if I don't. Of course I don't know if I'm even getting it. How long does it take for the SEs to kick in? My onc, bs, and the clincial trail coordinator are all positive about this.During my first chemo my roommate was also on the trial, and she was getting her last AC. She was really helpful and inspiring. Only 36years with 2 young kids, and her large tumor also didn't show on the mammo and was too deep to feel. Oh what I'm learning!

Thanks for your support

kim

carolynf · January 2009

Hi Brena,

My radiated boob is fine. Where the incision was (about 3 o'clock) is a little indented. It has come along way. No pitting. When I had my onc do a feel at the last appt or one before i told him my breasts do not feel like they used to. He called it fibrosis(?) I think. Where the tissure breaks up from the radiation/chemo. He said to keep feeling them so I get used to it and can tell any differences. When I feel under my arm where the nodes were taken out, it is still a little sensitive. Then only reall issue I am having is the port. I think it does have something to do w/the original kink in it when it was put in. I have 2 more weeks and it will be gone! Quite night tonight w/hubby and little guy. My other 2 are at my girlfriends house having a bonefire. Talked to my sister who just got back from Iraq. I'm glad she's home. More snow today. I don't think I will make it tonight to watch the ball drop....but maybe the boys will wake me up in time! I hope you get another opinion on your mammo. Let's celebrate for a GREAT 2009!

Carolyn

carolynf · January 2009

Teresa,

Have you gone to an ENT yet? I am just wishing for my NORMAL sinuis's to come back. My onc is also hoping for my sinuis's to get back to the norm. If you find any cures let me know. If they do not change after I get my port out then I may seek an ENT for a cure!

Carolyn

Clinical Trial E5103

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