IBC and IDC and triple negative

Options
2

Comments

  • twinkied
    twinkied Member Posts: 28
    edited May 2011

    Hi Leslie,

    My docs thought I should have done surgery earlier too but like your case Dr. C felt it was too large, etc...  The rad onc didn't say specifically why the bolus was done every other day rather than every day but I would suppose it had to do with skin damage.  You could always call out to Fox Chase and ask what they do to make sure. 

    Yes you will have to be a little patient. Radiation does not work fast like chemo.  It is based on an accumulative amount and you will not see results for probably a few weeks.  Hang in there!!!

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited May 2011

    Hi Twinkied,

    Thank you!  I will try to convince the radiation onco to contact Dr. C.  I hope you are continuously healing well.  Do you have any plan to go back to Dr. C for follow up?

    Best wishes,

    Leslie

    · Share on FacebookShare on Twitter
  • Towny
    Towny Member Posts: 111
    edited May 2011

    Just wanted to chime in.. Since both of you are TN have you heard about the PARP inhibitors.

    Sounds like Dr C. knows what he is doing. This is a new drug that is in clinical trials that is very good for TN... ask him as see what he says.

    I am also on xeloda.. no SE at all!! surprised and relieved!!

    Also get your Vit D checked.... it should be up to 80 or so.

    Also ask for the CTC .. blood work.. Cancer tumor cell search..

    · Share on FacebookShare on Twitter
  • Towny
    Towny Member Posts: 111
    edited May 2011

    Just checked out Dr. C!! Looks wonderful. It even talks about the CTC blood work I just suggested!!! Looks like you guys found a great place to go to.

    Good Luck

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited May 2011

    Towny,

    This may be a dumb question but I am not sure what your abbreviation SE stands for??  Also, I noticed in your diagnosis it says bone mets.  I was wondering how you found out.  Was there symptoms like pain, etc... as I have been having quite excrutiating pain in my rib area and leg and have been wondering about bone mets? thanks

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited May 2011

    Hi Leslie,

    If your rad onco does not call can't you call out there and ask the nurse?  If you are a patient there (have you seen Dr. C?) you can call and talk to the nurses about your treatment.  That is what I did when there was a difference in regards to how often to take the xeloda.  My local doc had me taking it 2 weeks on/ 1 week off but Fox Chase has you take it mon-fri every week as long as you are having rad treatments so we changed it to what Fox Chase does. So maybe you could call and check if your doc won't. Just a suggestion...

    As for a follow up visit to Dr. C he said after he sees my path report they will be able to suggest a follow up plan. I am still waiting on the final report.

    Hope your week went well!

    · Share on FacebookShare on Twitter
  • TEK2009
    TEK2009 Member Posts: 62
    edited May 2011

    Dear all

    Can you help, having read this thread it sounds like many of you have had or are having Xeloda, I am trying to decide whether to go ahead with it, given I do not want to feel terrible for the next few months, but speed at which rash (it is cancer mets in lympahtics apparently) is spreading is scary have watched it go from almost nothing to whole B in just 2 months. On top of that it has spread up my neck.

    Any help on Xeloda SE's much appreciated.

    Thanks T

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited May 2011

    I did not experience difficult SE from Xeloda. Basically low white counts, some loose stool, and skin peeling on my scalp (it typically happens to hands and feet but mine was the scalp).  My doc did have me take vitamin B6 to help with the hand/foot syndrom and it seemed to keep it bay.  It did not make me feel terrible. Hope this helps you decide

    · Share on FacebookShare on Twitter
  • Towny
    Towny Member Posts: 111
    edited May 2011

    SE stands for Side effects. Looks like you figured it out.

    I had NO symptons. My onc was doing a routine PET scan every 6 months.. found 1 cm spots..

    my t1 vertabrae around my neck area was 50% compromised!!! NO pain!! After getting the PET scan around two weeks later there were symptons. swollen lymph around my neck and under my arm as well as stiffness between my shoulders.. I am grateful that the scan came first and not the symptons!! I went on vacation and when I got back I started treatment asap!!! I was going to go to Sloan Kettering but they told me I could wait 6 months for treatment no big deal. I am going to a doc who is doing a PARP trial. So when the xeloda stops working I have that in my back pocket. I have to say xeloda has been great ... no problems at all. Of course I am tired!!!but I can deal with that.  We all need to get PET scans to know where the cancer is than you get a mri to see the damage .. at that is what has happened to me. The Fox Chase place looks like a great cutting edge place. I would seem to me if you have any concerns they will scan you and see what is going on.

    You know your body!! So YOU have to really push things and communicate your aches and pains.

    Right now my right hip has been bothering me. I am getting scanned on June 3rd. I have always had a problem with my right hip and went to a chiropractor.. but of course now I cannot go there and get adjusted. So we will see what is really going on. It has been persistant for a few weeks and I am praying that it is only out of whack and not TN down in there!!!

    All the anxiety is sometimes overwhelming.. Trusting docs is tough. I have seen a lot of them and they all seem very busy ... even the good ones...

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited May 2011

    Thanks for the info.  My med onc is considering a pet scan.  We did an x-ray but it did not show anything.  Do you know, or anyone know for that matter, if a regular x-ray would show cancer in the bones or elsewhere?

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited May 2011

    Hi,

    Twinkied: week 1 has been good, get 2 days off from Xeloda (like you) and 3 day off from radiation.  Yeah!   Sorry to hear that you have bone pain.  Did you have it when you had the PET/CT scan?  What does your doctor say about the pain?

    Towny:Dr. C is the expert on IBC.  I live on the west coast, only went to him once for 2nd opion.  I heard of PARP, do you have any idea how to get in clinical trial?  How long have you been on Xeloda?  Thanks for the tips!  Do you mind tell us more about your story?

    TEK2009:so sorry to hear that.  I've only been on Xeloda for a week, so far so good.  If your doctor prescribed it, I think he/she will monitor you, and reduce your dosage should any of the side effects get really bad.  As twinkied mentioned, hand/food syndrome is the most common one.

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited May 2011

    Hi Leslie,

    Glad to hear your week went well and you do get the weekends off - enjoy them :)

    My bone pain just started this week. At first the nurse thought it was possibly a blood clot from surgery but surgeon said no.  My med onc thought maybe shingles but I don't have the rash.  He ordered an x-ray but it came back negative. So they are a little puzzled as to the cause.  I am to let him know how I feel after the holiday weekend.  Though yesterday I saw a segment on Dr. Oz that talked about leg pain and ovarian cancer so I wonder about that.  I am trying to find out more about it as I have had a couple of issues in that area as well.

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited May 2011

    Hi Twinkied,

    So sorry to hear you have other issues also...  Can't imagine ovarian cancer and leg pain can be related.  Did Dr. Oz explain the connection? I think Towny is correct, PET/CT is the sure way to tell.  Will you be able to push your onco to do that or Dr. C?

    Towny: Are you taking Xeloda only? What chemo have you taken?  Nice to have something in your back pocket.  Were you originally being treated at Sloan Kettering?  Hope your treatment will take care of your bone mets soon.

    Leslie 

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited May 2011

    Hi Leslie,

    This is what Dr Oz. said   "Well, what cancer is is abnormal cell growth. And, very simply, what these cells do is they spread and they invade the local tissues. And then they can metastasize or travel to foreign tissues. So depending on where they implant or how large the tumor gets, they can invade nerves, et cetera, and that determines where the pain is. Some women have lower abdominal pains. Some women have pelvic pains. Some women have back pain. And some women even complain of leg pain."

    I think my onc may do a pet scan. He said the other day that he was not expecting to have to do one so soon but if it is what we need to do we will do it.  The pain has not diminished any so I will call him tomorrow.

    I hope you are having a nice Xeloda/radiation free weekend :)

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited May 2011

    Hi Twinkied,

    So sorry to hear the pain didn't let up, please do get the PET/CT as soon as possible, and hope the pain will go away soon.  I know how every pain bring fears and I'm still learning how to manage it also.

    Thanks for relating Dr. Oz's warning signs regarding ovarian cancer!  I hope in your case, there is other explanations.  You just did the PET/CT not too long ago, is that right?  Thought if there was any in that area, it would have shown up already. 

    Your doctor sounds pretty good and not 'stingy' about testings to get to the bottom of things.  That's great!

    Hope you will feel better soon.  You are in my prayers!

    I enjoyed the Xeloda/radiation free weekend, figured I might as well.  Here we go again...

    Leslie

    I

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited June 2011

    Hi Leslie,

    Sorry for the late reply :(  

    My doc ordered an mri instead. Said it will give us a better look at the leg issues.  I had it done on friday and so, of course, I am waiting for the results.  My previous pet scan was done in february and it did not show anything. 

    Hope your treatment week went well and that you were able to enjoy another free weekend.

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited June 2011

    Towny,

    How did you scan go?

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited June 2011

    Hi Twinkied,

    I did enjoy the Xeloda/radiation free weekend!  I hope your rib and leg pain was under control.  Did your doctor prescribe some pain medication?  I can imagine how anxious it is to wait for test results, unfortunately, that is what we will need to learn to accept and manage.  When will you know?

    Was last PET/CT scan ordered due to IBC showed up?  I am just surprised that there was not another one done before the surgery?  And, why MRI this time?  Yes, I'm worried how Xeloda can keep the cancer cells under control.

    I hope the doctor can find the cause of your pain soon.  You are in my prayers. 

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited June 2011

    Hi Leslie,

    Glad to hear you had a good weekend.  Keep on going. You are doing great!

    My doc had me stop the pain meds and try ibuprofen.  He ordered the mri because he said that is the test that will show more of what is going on with the leg.  The results came back today and it did not show anything that would explain the pain.  There was a lesion but it was benign. There is a bone island but that does not cause pain.  I think he is as frustrated as me as to what the cause is.  I see him tomorrow and we are going to re-evaluate things.

    The last pet/ct scan was to see if there was a change in the molecular activity since the previous one.  It showed the mass was bigger but with less activity.  My pathology report from the surgery was excellent. The mass was clean, the skin was clean, and they only found a 1 mm cancerous lymph node.  Even my surgeon was surprised because of the size of the mass that was left - but it did not have any cancer in it!!!!  So hopefully your xeloda/radiation works as well as it did on me :)   STAY POSITIVE!!!!

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited June 2011

    Hi Twinkied,

    Thank you so much!  Yes, I should stay positive, there is no looking back.  You are my role model!  That path report is just so encouraging.

    How baffling that must be for you and your doctor?!  Don't understand why your doctor wanted you to take ibuprofen instead, hope that was enough to control the pain.  One time I developed major pain on my port side, they suspected a blood clot but even with ultrasound a clot couldn't be found, I had a shot of blood thinner, the pain miraculously went away.

    Oh, I hope your doctor find the cause soon!!!  When will you see Dr. C again?

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited June 2011

    This is just a side note for some of you, Ibuprofen DOES thin the blood. That may be why her dr. ordered it. Mine has also, for the same reason.

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited June 2011

    This is just a side note for some of you, Ibuprofen DOES thin the blood. That may be why her dr. ordered it. Mine has also, for the same reason.

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited June 2011

    Thank you, Leisa, it made perfect sense!

    Twinkied: How are you doing?  I'm getting a bit worried....

    Leslie

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited June 2011

    Hi Leslie,

    Sorry for the delay in posting.  Still having leg pain and still no definite answer.  I think the ibuprofen was to reduce any possible inflammation but it did not work.  He then had me try a dose pack of steriods but that did not help either.  I met with him today and he thinks it may be some sort of nerve issue so I am trying another prescription for pain relating to nerve pain. He also wants me to see an orthopaedic because he said he needs help in figuring it out (at least he is humble and honest about it).  I am having trouble finding one that takes my insurance so that is always fun.  I am extremely tired because the pain wakes me up at night and I can't sleep but other than that I am doing well.  I have not been able to get any info from Dr. C as he has been out of town for weeks.  I am a little disappointed in that for sure!  I was hoping they could shed some light on this leg issue.

    How are you doing with your treatments?  I hope well!!!!

    · Share on FacebookShare on Twitter
  • Leslie2010
    Leslie2010 Member Posts: 70
    edited June 2011

    Hi Twinkied:

    So sorry to hear that!!!  Can your doctor at least prescribe something to help you sleep at night?  I hope they will figure it out soon.  Did they tell you when Dr. C will be back?  How frustrating!!!

    I'm doing well, the mass is getting a bit softer now.  The tan line is definitely there.  My radiation oncologist told me today it would take 4 weeks for the skin to be healed enough to have surgery.  I didn't like that.  I thought it would only take 2 weeks top.  2 more weeks of radiation left...

    Take good care,

    Leslie

    · Share on FacebookShare on Twitter
  • twinkied
    twinkied Member Posts: 28
    edited June 2011

    Hi Leslie,

    Glad to hear your mass is responding.  Yes, it takes 4-6 weeks for the skin to heal enough.  I went 4 1/2 weeks between finishing radiation and having surgery.  How is your skin holding up so far?

    Dr. C will not be back for 2 weeks :(    The med we are trying for nerve pain makes you drowsy so hopefully that will help me sleep.

    Stay strong!!!

    · Share on FacebookShare on Twitter
  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Can anyone help I have been dx with TN IDC and it has recurred but in form of a rash on my breast and chest and is spreading fast, drs think it is the same as before but I suspect it is actually IBC, it certainly itches like crazy so wanted to know does anyone know of any cream that alleviates the itching a little, I know it wont go completely but something would be good,

    Thanks T

    · Share on FacebookShare on Twitter
  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited June 2011

    Hello TEK2009

    I have put a post for you on Calling all TNBCs in the UK. Have you managed to read it?

    I hope to hear from you.

    Sylvia

    · Share on FacebookShare on Twitter
  • Susanhf
    Susanhf Member Posts: 24
    edited June 2011

    I have been on Xeloda 3000 mg two wks on and I wk. off. I have had few side effects. A little bit of balance issues, but not severe, and some mild and issues. Otherwise, I feel good. I am a bit more tired, but not anything llike I was on A/c and Taxol. I think it is a good drug.

    · Share on FacebookShare on Twitter
  • Susanhf
    Susanhf Member Posts: 24
    edited June 2011
    Your situation sounds like mine. I got a rash, and the docs thought it was dermatitis. Not so. It was a recurrence of my TN cancer. I had a steroid cream which helped the itching a bit.
    I also used Eucerin cream. I am now on Xeloda, and my rash is receding. It is not itching at all and it is fading to brown. The docs said they had not seenIBC present like this before. I am going for a second opinion to an IBC doc to get an idea if there is anything else that can be done.,
    · Share on FacebookShare on Twitter

Categories