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Topic: Looking for answers about length and course of treatment for IBC

Forum: IBC (Inflammatory Breast Cancer) — Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is NOT recommended -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Jul 12, 2008 10:44AM

PennStateMac wrote:

Hi everyone,

I was wondering if people could tell me what your course of treatment was (or is) for your IBC.  My mom was diagnosed in Feb 2008 w/stage 4 (skin involvement and lymphnodes in neck and under both arms affected).  She began round of chemotherapy in March 2008 of Taxol/Gemzer.  She will now be beginning her 7th round of treatment on Tuesday-this will be 18 weeks of treament now-over 4 months.  The cancer is responding very well and is shrinking and her last scans showed significant improvement in the size of the nodes.  However, the dr still has no sense of time of when the chemo will end, if surgery is going to happen, ect...  My mom is starting to become depressed since there doesn't seem to be any light at the end of the tunnel.  I would greatly appreciate if anyone can tell us how long you were in chemo, if you had surgery or not, did you have radiation or more chemo after surgery and how long it was until you showed up as NED.  We were never expecting this to be a short journey but we need a little more info than what we have been getting.  Thanks for any help and informantion you can give me.

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Jul 12, 2008 12:13PM Caseysmom wrote:

mcoyne-whalen:

 I was dx with IBC in July 2004: had 20 weeks of chemo prior to surgery.  After surgery I had another 11 weeks of chemo followed by 7 weeks of radiation.  2 weeks after treatment I had my tumor markers done and a bone scan.  When I saw my doctor 2 weeks later for the results he told me I had no evidence of disease.  In August I will be 3 years out from treatment.

Laura

Dx 7/19/2004, IBC, Stage IIIb, 9/17 nodes, ER-/PR+, HER2-
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Jul 12, 2008 03:56PM, edited Jul 12, 2008 05:21PM by FloridaLady

My first diagnoses of IBC, I was treated for 4 months with Carbo & Gemzar every two weeks and then every other week with Avastin and CG. (I than found bc in other breast and did two more sets of chemo.) I'm two years out from my orginial IBC and just started all over again.  We decide to use the same chemo combo.

The key to your journey with this, is how involved your bc is at diagnoses.  If you have lymph involvement away from breast area your treatment will be a lot more aggressive.  I also have lymph involvement in the neck this area is not always easy to treat.  Also they very, very rarely will do surgery anywhere near the neck.  They call this high end real estate.  My thought is they, may want to treat her aggressively at first and then have surgery...I would say she they will do rads and possible back to chemo if neck has not responded.  I sorry to say this, but I know from experience the neck is hard to treat.

Is there any way you can get Avastin for her?  This drug has improven excellent with IBC. This was approved last year.  (I got it the first time 3 years ago, outside of a trial)

If you feel the need for more information from a doctor.  I know she will not be happy...but get a 2nd opinion may ease everyone's mind.

May I ask how old your mother is?  This also will somewhat control her treatment options.

Wishing you and her, hope and peace.

flalady

trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv

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Jul 12, 2008 04:42PM, edited Jan 10, 2009 04:50PM by AlwaysHope

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Jul 12, 2008 05:28PM, edited Jul 12, 2008 05:30PM by FloridaLady

Actually all IBC is consider Stage IV, the skin is a organ, if you want to be technically.  But if your IBC can be removed with surgery, again the skin and nodes involved.  You can have a excellent prognoses.  The problem is the nodes in the neck can not be removed and most be treated with rads and chemo.  Keep up the hope, she has not yet spead to bone or major organ.  This is the goal of her treatment.  I have had 56 nodes positive and still have not spread to bone/organ after three years. 

 Flalady

trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv

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Jul 12, 2008 05:42PM, edited Jan 10, 2009 04:50PM by AlwaysHope

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Jul 12, 2008 05:47PM, edited Jan 10, 2009 04:50PM by AlwaysHope

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Jul 12, 2008 05:48PM, edited Jan 10, 2009 04:50PM by AlwaysHope

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Jul 12, 2008 05:57PM, edited Jan 10, 2009 04:50PM by AlwaysHope

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Jul 12, 2008 06:15PM FloridaLady wrote:

Sorry,, I have been told by three top cancer center's IBC is stage IV if it hit over a certain amount of lymph involvement outside of breast area.

Flalady

trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv

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Jul 12, 2008 06:20PM, edited Jan 10, 2009 04:49PM by AlwaysHope

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Jul 12, 2008 06:28PM, edited Jul 12, 2008 06:30PM by FloridaLady

I have been told it is only IIIb if it does not spread.  I was a IIIb until it moved to lymph of neck and a recurrence in the skin.  Now it is stage IV.  And you can have bc anywhere in the body and it still "breast cancer".  Lung met and liver mets are still breast cancer.  The key I think is that if your cancer can be removed with surgery it IIIb, after it moves to areas for example the neck where know surgery can not be preformed or like me with double mast. and a recurrence on chest wall now you are stage IV relying on chemo only treatment.  I have been told by three top center including MD Anderson that they can no longer control my disease.  That makes me Stage IV!

flalady

trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv

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Jul 12, 2008 06:28PM, edited Jan 10, 2009 04:49PM by AlwaysHope

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Jul 12, 2008 06:31PM FloridaLady wrote:

You want to call my doctor's? Smile I think three clinic would know.

Flalady

trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv

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Jul 12, 2008 06:33PM, edited Jan 10, 2009 04:51PM by AlwaysHope

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Jul 12, 2008 06:35PM, edited Jan 10, 2009 04:51PM by AlwaysHope

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Jul 12, 2008 07:49PM PennStateMac wrote:

Thank you for getting back to me with your info. 

 My mom is 62-will be 63 in August.  She has no mets to bones, brain, lungs, liver or any other organs.  However, she was classifed by the breast surgeon and the 2nd opinion oncologist at stage IV due to the "rash" on her breast and that lymphnodes abover her collar bone were affected.  The original oncologist classifed her at stage IIIb and said he felt that due to the fact that no other organs like bones, etc..were affected.  It just goes to show you how different drs stage differently-almost like they are "out-staging" each other! :-)

 My mom began her treatment at a local hosptial (we live in the suburbs of Philly).  We went to the University of Penn in the city to their Rena Rowan Breast Cancer center and got a second opinion from the head of oncology there who has treated IBC more often than the local hospital.  He said that he would be doing the same exact course of treatment she is currently undergoing and that for the moment he said that for the conveince factor it would be fine if she stayed at the local hospital.  But when the time comes for a change in treatment plan we are to consult with him and if he differs in the treatment then it would be her choice where to go.  Every dr we have met with has given us a good pronosis.  They say that they can treat this for years with different chemos, targeted therapies and possibly hormone treatments (Penn found that she was "slightly" ER+).  We have been told by the drs that this is a chronic illness and will be treated as such so she will be on something for the rest of her life.  But it can be frustrasting when the dr still doesn't have many answers as to when surgery may be possible.  But now that I know about the nodes in the neck it makes more sense-thanks FlaLady for that info.  It just seems that this cnacer is alot of wait and see.  This is hard for my mom who was a VERY acitive person and was never really sick before. 

 And I want to thank you too for telling me how many years out you have been since diagnosis with IBC.  You really don't know how much hope that gives me. 

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Jul 12, 2008 07:57PM, edited Jan 10, 2009 04:51PM by AlwaysHope

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Jul 13, 2008 01:14AM DianeE wrote:

Thought I would jump in here with my data...I have IBC and was told I was stage IIIb, possibly stage IIIc as the internal mammary nodes showed up on the pet as borderline and they did not want to biopsy those nodes.  Should any progression happen to superclav or other organs, was told that would be stage IV.  Staging can be tricky, but IBC is not an automatic stage IV from the start.  Thank goodness, that would be too much.

Diane

Dx 7/7/2007, IBC, 2cm, Stage IIIb, Grade 3, 2/22 nodes, ER+/PR+, HER2-
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Jul 13, 2008 07:59AM, edited Jan 10, 2009 04:51PM by AlwaysHope

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Jul 13, 2008 10:44AM shrink wrote:

I got the same explanation from my oncologist.  I'm considered Stage IIIc and not Stage IV (I asked) since there was no evidence of disease anywhere else but the breast area.  I'm still Stage III after my latest scans.  Hope it stays that way.

Dx 5/23/2007, IBC, 6cm+, Stage IIIc, Grade 3, 21/21 nodes, ER+/PR-, HER2-
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Jul 14, 2008 12:22PM dorfar wrote:

Hi All,

I just wanted to say that I was also diagnosed at a stage 3b. I have some lymph nodes involved. I was diagnosed through a lump I found in my underarm. I was told it was 3B becuase it has not spread beyond the breast area.

Mcyone-whalen: While my staging is different thank your moms I'm under going ACT chemo. Four of the AC and 4 of taxol. I was told I would have a mastectomy followed by possibly more chemo and then radiation.  I guess the additional chemo will depend on my margins after surgery. Please tell your mom to keep her chin up. Chemo can really suck and sometimes the thought of more chemo can be overwhelming when you feel so crappy. I try to think of it as a labor, and at the end of the labor I will give birth to new life. A new NED life.

Dx 4/29/2008, IBC, 3cm, Stage IIIb, 1/13 nodes, ER-/PR-, HER2-
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Jul 15, 2008 11:23PM PennStateMac wrote:

Hey again,

You are right dorfar, chemo does suck.  We met with the dr today and he postponed the treatment of Taxol/Gemzar my mom was supposed to have today.  She has some swelling in her abdomen (two nodes there had spots when she had the 1st scan done in Feb) and the rash on her breast looks like it is spreading.  So she will have more scans done Fri.  He said that it could mean that this comb of chemo is no longer working and he will have to switch to another chemo or combination of chemos-yeah.  I see many of you have had this Avastin.  Is that IV chemo or oral/pill form.  He didn't mention any names of chemos but said that he was considering one she could take in a pill.  That would be nice since my mom feels like a pincushion at this point.

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Jul 15, 2008 11:25PM, edited Jan 10, 2009 04:51PM by AlwaysHope

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Jul 15, 2008 11:26PM, edited Jan 10, 2009 04:52PM by AlwaysHope

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Jul 17, 2008 03:23AM mrs_X_Sunneedazee wrote:

I did 5 months of chemo (taxol, herceptin + Zometa for bone mets)

My last big3 treatment was October 16th, I had a mastectomy and oophorectomy same day Oct 25th.  

I was back in for Herceptin and Zometa Nov. 6th, only 3 weeks from the last one.  

I had 30 rads from mid dec-mid Jan08.  

I have continued with every 3 week tx of Herceptin and Zometa.

My last scan showed progression and new growth, so I will be going back on Taxol weekly.  I am dragging my heels and delaying the start of that until my kids go back to school.  I refuse to be sick like that this summer again.  

Every day is a gift...........www.amberchase.weebly.com

Dx 5/10/2007, IBC, 6cm+, Stage IV, Grade 2, 3/5 nodes, mets, ER+/PR+, HER2+
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Jul 17, 2008 07:17AM suzyq18 wrote:

hi i was diagnoed with ibc last aug started 18 weeks of fec chemo on 11th sept then had a masectomy feb 6th  then started 3 weeks or rads  on 17th april have been on tamoxifen from feb, had scan on 12th june and all is fine also cancer marker blood tests were clear,so i am now in remmission, hope you will be soon sue

Dx 8/29/2007, IBC, 6cm+, Stage IIIb, Grade 3, 6/8 nodes, ER+/PR+, HER2-
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Jul 17, 2008 07:42AM shrink wrote:

I had 5 months of chemo (4 Adriamycin and 4 Taxol) followed by bi-lat surgery three weeks later.  I had radiation for 26 treatments and am now on Arimidex.  Last scan was in May 08 and there is no sign of mets so far.  I'm keeping my fingers crossed for all of us.

Dx 5/23/2007, IBC, 6cm+, Stage IIIc, Grade 3, 21/21 nodes, ER+/PR-, HER2-
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Jul 26, 2008 01:07AM ibcspouse wrote:

My wife is IBC stage IV.  It is locally advanced with both breast, axilary nodes and superclav.  No distant mets.  Before 2002 this would have been stage IIIb but now considered stage IV.  This was reclasified due to thought poor pronosis once superclav get involved.  Now all recent studies show pronosis with superclav and local advance same as stage IIIb.

Wife, Cam has same situation as your mom.. breast tumor responding to TAC plus Avastin but rash spreading.  Switched to Avastin plus Gemzar and Carpo, this has knock out rash in two treatments.  Had 3rd treatment of this yesterday and will have pet scan in 3 weeks.  Dr not totally happy with overall and her have heart scan today.  But good news in the ctc (circulating tumor cells) is at 0,  They need to be less than 5, hers was over 100 when dx. 

good luck  

'and better things ahead I feel for the beatiful Camille'

Dx 2/6/2008, IBC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Aug 1, 2008 04:17PM Maryiz wrote:

Someone, please help me understand.  I don't really understand when people say mets to supraclavicular and mammary, but no distant mets.  I thought distant mets were lung, liver, bone and brain.  In terms of prognosis, are they the same?  Can you halt progress once it has spread to the neck?  I really don't understand the staging when one doctor says stage IIIB and another says IV.  Could someone respond who has been researching this?  Thanks, Mary

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Aug 1, 2008 05:50PM PennStateMac wrote:

Not good news this week.  The dr admitted my mom on Tuesday due to severe abdominal pain and headaches.  They wanted to run tests to see what was going on.  The MRI shows cancer cells in the lining of her brain.  They are putting a port directly into her brain to give chemo and she wil have radiation at the same time.  They say they caught this early and they can contain it, but they aren't very positive on her prognosis.  We were being told years and not we were told they would be happy with one year.  I am so sad and scared, I can't imagine how hard this is for my mom.  Now I can only hope for a miracle.

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