Clinical Trial E5103

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited August 2009

    Keryl,

    I had such awful time with my sinus's because of the avastin.  In fact after my last avastin I waited 3 months and had sinus surgery.  It was not fun at all but FINALLY my sinus's dont hurt all the time and the infections are gone. 

    Teresa

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  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited August 2009

    Sinus Surgery!!!!!  ahhhhhccccccccckkkkkkkkkkk  ...but glad you feel better!

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  • carolynf
    carolynf Member Posts: 262
    edited August 2009

    Hi all,

    I have been catching up on the reading but haven't  been posting since my life has been a little hectic.  Congrats to 23yrs of marital bliss!  That is wonderful.  Keryl, my sinuis's are back to normal believe it or not.  My last avastin was back in November and here we are not quite 1 yr out.  Hopefully yours will get back to the norm.  I still haven't figured out what the norm is after doing chemo/rads... 

    Brena:  How goes the BHRT?  I am really curious as to how that is affecting you.  I have 88 more days til I go on a cruise w/hubby and kids!  I can't wait.  Soccer is up and running so you know what I am up to.  Played in the softball tournament out in Sioux Falls, SD and came in 5th out of 13 co-ed teams.  I had a great time and maybe over indulged the first night of dancing and free drinks and a little bit of BAD kareoke!

    Teresa:  Good to hear you are doing well.  We definitely missed you on the cruise.  It was well worth the trip.  I had a great time w/Brena and the whole bit from  Cancer wellness. 

    To the rest of you strong women.  Keep up the fight and stay positive even when it seems impossible.  I hope we will one day live in a world where there will not be the word BC!

    Cheers, C

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  • Keryl
    Keryl Member Posts: 230
    edited August 2009

    Teresa - I am hoping I wont need to do that - but how did you get help? Did you go to a ENT or was it someone that your onco knew?  My onco (who actually I like) doesnt seem to recognize this as a major issue for me. While it is much better, I am worried it will become chronic.

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  • brena
    brena Member Posts: 458
    edited August 2009

    Good morning everyone,

    Not taking much time to read all the posts but think of everyone allot, so you are not forgotten even though I don't chime in much. I am so glad to hear everyone is bearing with the unbearable, it does get better verrrrrrrrrrrrrrrry slowly but it does. Not sure one should set himself up to ever being their old normal but heck give it a try.

    Carolyn, u cease to amaze me with all you do. SD I havn't been there for years, not much there other than ball, beer and karaoke. So you did everything there is to do, oh except riding that is definitely big. Where is the family going for the cruise? congrats on the 5th place, was your team from your local town? Tell your mom I said hello.

    I am doing good on the bhrt; progesterone and testosterone and I feel human again. I am not where i want to be but am giving this formula about 6 months before i ask for a re-formulation. Hot flashes are at a minimum, mood swings are even (I am now a bitch all the time, only kidding), and the insomnia has improved along with some better sleep and the sex drive has increased. So overall I am getting closer to normal and am glad to have made this decision. I will probably have another saliva test in a few months to reevaluate my hormone levels and with my physical symptoms re-evaluate my dosage. I am still biking and walking almost dailyand still working on eating healthier. I had my visit with the Ortho on Friday and my left elbow is healed and my right wrist does not show any bone damage. I developed major swelling, pain and discoloration in my left elbow so the Doc put me on some NAIDS for three weeks and then get to return. I use the arm as much as i can until pain sets in, but still seems to be loss of strength. I asked him if chemo can cause bone loss or weakness and he said yes, and asked if i ever had a bone density test and I told him yes which showed osteopenia and the Onc put me on a bishphosphonate. He was glad to hear that initiative. No way to know how long or how much our bones have been affected, I would personally suggest every woman get a bone density test after chemo, if nothing else but for a baseline.

    Summer of 2008 lost to chemo and summer of 2009 lost to a fractured elbow, cannot wait until summer 2010. Maybe I should book my trip now?

    I am booked with a girlfriend on the 2010 BC survivor cruise taking place in May, would be nice to meet some of you brave ladies if you can make it. I have also booked a cruise departing this 30 Dec 2009 for the East Med, will be for 14 days with three in Barcelona and then onto many islands that I have dreamed about visiting. I have told no-one else and yes I am traveling alone, although I have an invitation out to several people to room with me. Will see, am going anyway. I cannot $ totally afford to go but am doing it anyway, great price have the vacation days and am living for the moment.

    I did my blood work and all is NORMAL. Even the damn white count is normal, minimal but better than it has been all year. I started taking DHEA and B Complex supplements to help with some of my deficiencies, and i hate taking pills for anything.

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  • brena
    brena Member Posts: 458
    edited August 2009

    Teresa,

    Not sure how I screwed up your last name but am so sorry, the next article i get published i will double check. How did you make out with your 3 month checkup?  Curious about follow up tests, which have your Onc sent you for or which ones have you asked for?

    May you have an easy exchange tomorrow and it be everything you want it to be. Sorry I cannot go to Vegas with you ladies in September but it is so tempting. May have to go on the next trip, already thinking of next years....should of been a travel agent.

    How are you feeling these days outside of the nasal issue? I am finally scheduled for my past due mammo, not sure at keeping it yet because I am still sore when raising that arm above the waist (broken elbow side.) Thought I would give it a try since mammo was due in June, breast is sore with mega scar tissue so cannot feel anything normal about it. How the heck am I suppose to find a lump when the breast is one entire LUMP of scar tissue? please answer that one.

     take care,

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  • foobs
    foobs Member Posts: 110
    edited August 2009

    Sorry I haven't posted for a long long time.  Seems like the only time I post is when I have a problem and a question:

    I developed bad muscle pain all over and moderate neuropathy in hands and feet after 6 DD Taxol. So my onc didn't give me Taxol the last 2 weeks and said he may discontinue it if I'm not better this week.  He said I still have hormone ablation as one of my best weapons since my cancer is strongly hormone receptor positive.

    Has anyone else had bad enough muscle pain to take hydrocodone?  Hasn anyone experienced having to delay the Taxol or even to discontinue it after getting halfway through? 

     This is the first time I've felt scared and discouraged.

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  • brena
    brena Member Posts: 458
    edited August 2009

    foobs,

    Love to hear from you even if they are in times of need, makes me feel good if I can help. I did miss one week of taxol and possible future ones, my nails were infected and causing an infection in my body. I was on antibiotics for weeks, almost 3 months straight. I had no control over what was happening to my body, taxol beat me up. Anyway, I did not get the muscle pain to bad. I believe my savior was my dedication to exercises everyday, i walked or road my bike for 3+miles. There were days I was going to die, didn't as you can tell but it was not easy by any means. It was the only thing that got me through. Try finding a pool, maybe the ymca so you can move your body with easy exertion. The cool water should also sooth your muscles. Keep moving forward, find something that will help. Maybe body massages weekly, yoga etc. please keep in touch and let us know how you make out.

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  • Gramof3
    Gramof3 Member Posts: 301
    edited August 2009

    Foobs--I developed muscle and joint pain about half way Taxol (1x week for 12) weeks.  I did take hydrocodoneto help relieve the pain.  I finished T on Aug. 3, but sometimes feel like every muscle in my body is screaming (especially in my back and across the shoulder blades).  We didn't discontinue the treatment--I'm TN and don't have the hormone option, so I just wanted to finish chemo so I could start rads.  You'll work through this--you've come so far toward stomping this beast since March! 

    Sorry I'm so behind.  My classes have staqrted and I'm in rads now. I've decided that I prefer chemo to rads--I hate being half-nekkid, freezing, arms manacled above my head, feet taped together, head in a head-rest type thing that becomes a suction cup when my bald head goes in it.  I asked for a towel for the head rest and the tech said, "Oh, is that cup what makes the circle on the back of your head?"  Oh welllllllllll.

    Take care.  Helen

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  • moborn63
    moborn63 Member Posts: 70
    edited August 2009

    ok heres a question. I start on my last week of Rads beginning tomorrow on Monday. Yeah for me. As I have mentioned before I was in Arm C and decided to go on with Arm D.  I get the Avastin once every 3 weeks,  Week before last I noticed I was having quite a bit of pain in my finger joints and my knees. Now I have mentioned this to my Radiation Oncology nurse and dr but since it is not something that would be caused by radiation they do not seem to concern. I am starting to think on top of everything else I may be developing arthritis. Now there is no swelling in my fingers or my knees just joint pain and knee pain, when ever I first get up especially if I have not moved around for 20 minutes or so. What do you guys think. Anyone experience this type of complaint.

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  • carolynf
    carolynf Member Posts: 262
    edited August 2009

    Moborn,

    I have had the same darn joint pain more so in my knees and back after rads and also consulted my Rad Onc and my Onc.  My Onc said it could be from chemo.  After dealing w/the pain of getting out of bed (which my legs/feet would hurt) i started getting massages!  I can say it definitely helped.  I also have a massaging chair my husband bought me last year for my birthday.  I try in sit in that 1 or 2x a day.  I am going to a chiroprator who also does holistic stuff that has helped.  I am still waiting for the 30+ pounds to drop off sometime!  Try different things to see what works best.  I haven't tried accupunture yet.  My girlfriend is going to try it and if she survives it, I will go.  Good luck and hang in there.  It does get better.

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  • carolynf
    carolynf Member Posts: 262
    edited August 2009

    Brena,

    Glad you are healing!  I am also jealous of your 14 day cruise!!  We are heading out Nov 15th from Miami to Cozumel, Maya playa, Belize onto Grand Cayman Islands and back to Miami.  Kids still do not know about it.  My girlfriend was over the other night and mentioned it when the kids were there and I kinda blew her off.  When she went to leave I escorted her outside and told her that the kids don't know.  Anyways, it will be here before I know it.  I am still trying to get the kids their stuff for school which starts tomorrow. 

    The team I played on out in SD was the New Hampshire ANG team since its an annual guard tournament.  Next year is in FL.  It will be HOT playing down there. 

    Sounds like the BHRT is doing better than my script.  My onc knocked my script down to 1/2 the mg that I was taking.  I haven't quite got there yet but am working on it.  One thing my hubby has noticed is I now snore all the time!! What's up w/that!  Is it my sinuis's that has messed it up?  I have been sleeping but he will wake me up in the middle of the night to tell me to be quite!  I might have to talk to my onc about that one.  I have graduated to only 1 mammo a yr.  I am still thinking about getting a boob job.  I need to do some searching in regards to Docs in my area.  I am also thinking about the cruise next yr which I haven't ruled out....

    C

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited September 2009

    Hi again everyone.  Surgery went well.  There was hardly any pain at all...big switch compared to the last surgery!  I am looking forward to Vegas and Im sorry you wont be coming Brena!

    Carolyn are you going to make the cruise in 2010??? please say you are because I am planning on being at this one for sure!  I hope you and the family have a wonderful time on this cruise coming up.  Im jealous, I would love to see the ocean right now!

    Brena tell me all about this 14 day cruise....where will you go?  I am glad your doing well.  Dont worry about the name mistake LOL it happens.  I hope more people can make the next cruise.  I really am excited about going. I am going to start working out more so I can drop this extra weight I have before then.

    Keryl, my primary doctor is the one that referred me to an ENT.  I had just enough of the chronic issues.  I didn't know what they would do, and we did try low dose antibotics for a couple months but nothing helped.  Surgery sucked but  it wasnt horrible and it really did help me.  Honestly the odds are very much in your favor that it will get better all by itself, I guess I just got lucky LOL. 

    Teresa

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  • Keryl
    Keryl Member Posts: 230
    edited September 2009

    Teresa, hey thanks for the comments on the sinus issue. I know am getting better, but oh,  so slowly. I have not been to anyone, just dont the irrigation and neosporin.  I went to upper elevation this week and my sinuses really  hurt. I think my arm (lymph) hurt a little too. But all is ok; I am back now, and ok. 

    I go for my next set of tests on 10/1. I  am trying to be optimistic. Where do I get the 2010 cruise info, cuz it sounds great. take care.

      

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  • moborn63
    moborn63 Member Posts: 70
    edited September 2009

    Finally finished with RADs yeah....

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited September 2009

    Keryl,

    Here is the link.  I think it would be so awesome if lots of us could make it!

    http://www.breastcancerwellness.org/cruise.html

    Teresa

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  • carolynf
    carolynf Member Posts: 262
    edited September 2009

    Hello ladies,

    I am happy to hear so many are finishing up w/chemo and rads!  Congrats to you all.  Go out and get a massage or just do something for YOU!

    Teresa:  I hope to go on the cruise next year.  I haven't registered but its on my mind!

    I would like to share something that I had to call my oncologist about...I started spotting last week.  I couldn't get in touch w/him and was told to call the next day.  Well, the next day I started flowing!  Remember I had not had a period since Dec 07 and my onc said that I would go into menopause which I did and that's why I went on the Effexor for the hot flashes.  Well, he was very surprised to say the least.  I will be turning 47 next month and he categorized me w/the older group of women who do not have their periods return. Has anyone else have this happen?  Believe it or not my hotflashes have almost vanished!  I'm hoping that my body is reverting backwards to young.  

    I met a woman last night at a friends house who is a 3 yr survivor.  She had heard about me throughout town (not sure where, but she said from different people).  She had a DM and is doing great.  Well, I need to get some sleep since tomorrow is the start of the work week.  I hope everyone had a great Labor day.

    C

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited September 2009

    Oh Carolyn!! Me too!!

    My last period was Jan 08.  I was told I was in menopause.  Well June 15th I started spotting and by the next day I was really flowing.  They checked my hormones and I still am going through menopause.  My doctor said that  I may have an occasional one again...which I did on Aug 31st LOL it just stopped today.

    I am not thrilled with this at all.

    Teresa

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  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited September 2009

    Robin, congrats on finishing RADS !!  WOOOOOOOHOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!

    Periods returning?  hmmm...I just gave my coworker most of the feminine products I had at home!  yikes! 

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  • brena
    brena Member Posts: 458
    edited September 2009

    Moborn63,

    CONGRATULATIONS on finishing rads, what a wonderful way to start the fall. Do you have any surgery or follow-up? or just to start the healing process? Definitely celebrate when ur up to it. Sorry to hear about he bone pain, yes I had it but not as bad as some others. Try different home remedies until you find something that works or the pain stops, I hope for the lateral for you. What is next for you? anything?

    take care and you did it!!! awesome

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  • brena
    brena Member Posts: 458
    edited September 2009

    Carolyn and Teresa,

    All i have to say is,,,,bring it on baby!!! I will be the one who does not get it back, havn't since dec. 07. Not sure if my bhrt would support the menopause or if I would have a breakthrough even on the meds. Time will tell.

    Carolyn,

    Glad to hear you were able to meet someone from your local who can share their experience with you, always nice in those times of emotional despair. When do you plan on telling the kids about the trip, they will be so surprised and excited.

    Teresa,

    Glad to hear your surgery went well and your feeling comftorable.  What follow-up visits and frequency do you have with the Onc?

    I had my 6 month radiated breast mammo on thursday, actually turned into 9 months. The nurse wouldn't tell me anything but to come back again in another 6 months. I will get the results at my Onc visit next week, the official report is always more detailed than the verbage they provide at the time of the visit. But I must say, I am officially done with mammo's unless I find another lump. The squeeze was god awful, almost tears and I was denied an ultrasound as an alternative. I have lost much faith in the mammo result due to my history of having them every year and then it not finding a 3cm tumor.

    All is well, elbow is still being worked on by the Ortho next visit Sept 21. Still eating healthier and excercising regulary; although not all the weight will come off despite my effort. I am considering going to my family doc to review my hormone results, specifically my cortisol level. I have started taking dhea and b-complex each day in hope it will help. Not really the pill person but am giving it a good shot.

    My 14 day ocean cruise is to the East Meds with Italy, Greece, Turkey, Egypt (Cool), Malta and a whopping three days (new years eve) in Barcelona. Every island (country) I have on my list to visit. Cannot believe I am getting them all in one trip. I also get one day at sea inbetween each country which allows me time to relax. I am still waiting on my 3 week vacation approval from my boss.Should be this week.

    Carolyn, Are you considering a breast reduction? i also have given it some thought but have read many docs dont' want to go near us due to BC history. Not sure what one has to do with the other, they cannot cause BC by performing the procedure. If you are considering and find info please share, as me and other would appreciate the knowledge.

    take care as I have to go back to work,

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  • moborn63
    moborn63 Member Posts: 70
    edited September 2009

     I have 1 more PT scheduled for the lyphodemia. It is under control. I have 1 more follow up so that they can check my skin with the radiation oncology dr in OCT. and I am still getting the Avastin once every three weeks until March. Losing the steroid weight and and getting back down to my normal weight. I still need to check with dr on my blood pressure. It is still in th hypertension range consistantly it has not gone back down to normal. And no my period have not started back up yet. (which I have no problem with LOL). And t he pain in my knee and finger joints are still there but I have been taking Tylenol muscle and joint pain and it helps. Hope everyone is doing good.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited September 2009

    Brena,

    That sounds so wonderful.  Im terribly jealous!  I want to go to Rome very soon but Im trying to figure the best time to do that. 

    Teresa

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  • carolynf
    carolynf Member Posts: 262
    edited September 2009

    Teresa,

    I can't believe the same thing happened to you to!  My onc said that we could do the hormone test but didn't think its necessary.  I am tracking on my calendar as to when I start and when I stop.  I will see what happens.  I would be happy having my normal hormones back.  If its going to skip a month I am really going to be messed up!!

    C

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  • carolynf
    carolynf Member Posts: 262
    edited September 2009

    Kfinnigan,

    I had given all my products to my daughter and then had to raid her supplies!  Time to go shopping again!

    C

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  • carolynf
    carolynf Member Posts: 262
    edited September 2009

    Brena,

    I have talked w/others under reconstruction who have undergone breast reduction after lumpectomy.  As a matter of fact, one of my breast (hehe) friends did not get clear margins the first time around and when she went the second time she had a ps there to do a lift/reduction.  She is very happy w/her new 20's and told me I should see her PS.  I had found some women under reconstruction who had the reduction (Hollyhopes) was one.  There's quite a bit of info.  I think the one thing you need to find out is if the PS has worked on women who have been radiated.  There's a couple of Mainers who have found PS in Boston who I go online and see how thier visits are going.  I first want to lose the weight before having anything done.  I would just like to be a size C cup!  When I start looking for a PS I will let you know.  First I need to find a dietician to get these pounds off my body!  Well, time to get the wee ones to bed before I fall asleep. Good night all!

    C

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  • TexasRose
    TexasRose Member Posts: 740
    edited September 2009

    Hi ladies!

    Robin- YEAH for you on being done with rads!!!!

    My blood pressure problems have continued. It's been very sporadic- sometimes okay and other times very high. When I went for my treatment yesterday, it was 175/93. The clinical trial nurse and I had already talked and she decided she is taking me off the Avastin for good. I haven't been able to get it the last two times that I was supposed to because of my BP. She just doesn't feel comfortable giving me the Avastin/placebo and exacerbating the situation. Honestly, I agree with her. I was upset to be out of the trial though, but then she explained to me that I am not out of the trial. I received 5 of 8 scheduled Avastin treatments and they will still follow me as if I was still in the trial. I am to be unblinded on 9/22. We are assuming that I am receiving the Avastin because of the BP problems which it does apparently. We'll be very surprised if it's the placebo. But it doesn't matter which arm because I will not be continuing. So, my last chemo is October 6th.

    I was two years post menopause when I started chemo. Glad that little surprise won't be paying me a visit!!

    Hope everyone is well!

    Mary 

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  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited September 2009

    Mary, keep us posted on the blood pressure and also on the unblinding, even if you aren't continuing on!  Your last chemo is almost here!!! YAY!!

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  • TexasRose
    TexasRose Member Posts: 740
    edited September 2009

    Hi ladies. Just wanted to let you know that I was unblinded today and I was in Arm B so I was definitely getting the Avastin. Not really a surprise considering the side effects. Today would have been my last Avastin anyway. After missing the last three Avastin treatments, my side effects from it are getting better. Blood pressure is leveling out for the most part. Still spikes sometimes, but not as often. And the "butt issues" have totally resolved. I am still part of the trial and will be monitored, but no more drug for me.

    Hope everybody is doing great! Only two more Taxol for me!! I will be done on October 6th and my port is scheduled to come out on October 26th!! Yeah!!!!!!!!!!!!

    Hugs!  

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  • littletower
    littletower Member Posts: 333
    edited September 2009

    Hi Texas Rose;

    I think I am in the same clinical trial you are talking about, but not sure I am getting Avastin, although given my raspy (sometimes completely lost) voice and restricted breathing on days 4 and 5, I think I am. Can you tell me what your symptoms were?

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