IBC DIAGNOSED, LETS SHARE OUR STORIES!
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Welcome chancensinsmom!
Your treatment plan sounds almost identical to mine. I was diagnosed last Oct 30...a week or so later I was on the AC cocktail....4 very difficult rounds. I was on a 48 drip at home every two weeks depending on bloodwork. I had some mild nausea but mostly fatigue - SEVERE... I then had 4 rounds of Taxol - it was easier but had it's issues. Mostly joint and bone aches, along with fatigue not quite as bad as the AC. I finished chemo mid April, had a right breast mastectomy+ 10 nodes on May 15th. I'm planning a bilateral of left breast when I start reconstruction. Left breast is fine but I have decided to have it removed. I have 9 of 34 radiation treatments behind me and recon will start after that. Then 5 years on Tamoxifen.
You are in my prayers!
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Bette:
You may also want to get cepacol sore throat spray for after your procedure. I had an EDG done back in May and it helped me alot with numbing the throat so that I could eat.
Welcome to both ibjennifer125 and chancensinsmom! On August 12th I will be NED 4 years and with 2 years left on arimidex.
Hugs
Laura
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Hi I'm Dani and I'm 52 years old, married 26 yrs. no kids. In May 08, I had a full hysterectomy due to fibroids, cysts in my ovaries and the possibility of cancer. No cancer. In May 09, during my mammo, the tech mentioned that my left breast was more dense and would do it over. I was surprised to feel that it was. My mammo came back negative. A friend said she had the exact same symtoms and had seen a homeopathic doctor. She tested her thyroid, recieved an ointment and the mass dissapated. Another friend insisted that I have it rechecked. The OB made an appointment for an ultra sound and a General Surgeon. The ultrasound did not show anything but I should still see the GS to be sure. Yesterday, the GS called to say the biopsy confirmed I have breast cancer. It's surreal to hear those words. I thought it odd as no one in my family has breast cancer or cancer, at least to my knowledge. The GS asked if I would like to see him so I drove right over. I was trying to register what it all meant. He was making my appt. with an oncologist and recommending chemo, radiation, and then surgery, I think. Not sure, still not registering. He suggested taking some time off of work. He ordered some blood work done and a chest xray. I asked about losing my hair. He said not to worry it would grow back... curlier, we both laughed. He gave me a packet of info and asked if I wanted a copy of the report. No, I figured I wouldn't understand it anyway. It could be denial. I've read the info and then went on line to prepare for the Oncologist next week. I have no idea what you all are talking about but I'm sure I'll find out. I haven't told anyone yet, I'm practicing now. I hope you don't mind. I may wait til after my appt. and more specifics before I start sharing the news. I need these few days for myself to process. Thank you for helping me do so.
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Welcome dani52.......
My prayers are certainly with you as you try to process this news. This is a great website and the women on here have been in the same valley your in - the one immediately after diagnosis. It gets easier especially when you put those boxing gloves on and start fighting. That fighting spirit seems to take over and though we still have our fears, fighting back strengthens us.
Please keep us informed.
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danii52
Welcome! We are here if you need us. Hang in there it does get easier when you know what your treatment options will be and you get started. All the waiting is the worst. The waiting is something you will get better at because you will do a lot of it. If you haven't ask for something to help you sleep. Just letting your brain rest these few hours is very helpful.
flalady
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Hi Dani,
Thinking of you as you start your battle. I know what you mean about everything being surreal. I felt the same way after diagnosis and sometimes it still seems unreal to me. Like ibjennifer125 said, it does get easier once you get into fighting mode.
Hugs,
Monika
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Dani:
Welcome! like FloridaLady stated we are here if you need us. Just like what everyone else has stated it does get easier once you know your treatment plan.
Keeping you in my prayers.
Lots of Hugs
Laura
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ibjennifer125 - thanks for the emails as well as responding on here!
NYmom60 - Not that it's something to be excited about, but we were diagnosed on the same day. Have you had similar treatment so far?
dani52 - I'm new here also, just joined but welcome to the site and I'm so sorry to hear your news. This group seems really knowledgeable and I'm sure you'll find lots of support here.
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Hi Girls,
Wow, I am humbled by your strengths and words of comfort. I don't feel as scared or alone now because I am in the company of warrior women. I'll do my best to fight the fight. Any advice on diet? Green Tea, Spinach, No Sugars, etc. I figured if I'm in the war I'd better suit up. I learned that I've probably had cancer for 5+ years before detection. I know it's silly but I feel better knowing that. It may explain some past health issues. I'm worried about my friends. I know they are going to be mad and scared. I checked out caringbridge (thanks Bette). I like the idea of not having to repeat the same scary news again and again. Any other suggestions?
Thanks for your prayers... Ditto to you all...
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If you like I have a complete list of supplement and diet changes that helped me. Let me know because I have to get it off another computer. I'm almost four years in tx and have worked until the last few weeks. I must have done something right.
Flalady
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FlaLady, I am in awe that you have managed to work for four years. I must not be eating right, because I had to take disability with the first round of chemo. Kept being hospitaliizd, and my employer was not sympathetic.
I have news! Biopsy scheduled at Johns Hopkins on Wednesday, July 22. I was told today that I could have a primary lung cancer instead of a BC met. I don't like the sound of either possibility, so I am praying that the procedure is safe and the results benign.
Bette
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Chancensinsmom: Welcome to the club we don't want to be a part of! My treatment seems to be a little different than almost everyone else with IBC since I have not started with AC, instead I receive taxotere, carboplatin and herceptin every three weeks. Have treatment #4 tomorrow and at this point I am supposed to have a total of six. Hope everything is going well for you.
Dani52: I can't offer too much advice about diet since I'm pretty new at this too, but I am definitely trying to cut down on the sugar. Trying to avoid those yummy cakes and snacks my coworkers always bring in. I find it hard sometimes though because cake is one of my weaknesses!
Bette: Hope and pray the biopsy goes smoothly and your results are b9.
Hugs to all.
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HI everyone. I just got my Gene test results back. It turns out I'm positive for the BRCA2 gene, surprising for an IBC patient I'm told. So now the recommendation is bi-lateral on the right when I have the full mastect. on the left, and a full hysterectomy due to strong family history with ovarian/uteran cancer and my own abnormal paps. WOW! I was being positive, but this is a lot to take in, it feels like getting the cancer diagnosis all over again.
Anyone have this done? Feeling now?
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I'm not sure what that gene is, but surely I was tested for it. I have a copy of my med/records and never saw that in them.
Stay positive Lyn......I know it's difficult sometimes but you are going to lick this thing.
Hugs and prayers coming your way
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I tested negative for the gene, which was a relief both to me and my young adult daughter.
She is still going to get checked regularly and will probably start mammos in her 30's because I have IBC.
Lyn, this IS a lot to handle. I am praying for you every morning.
Bette
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- ibjennifer,
The gene test is to see if you are brac 1 or 2 positive. Doctor's feel this can show risk of family getting bc. This test is not completed by your doctor without you signing a request from you to have this test done.
Bettelou.
I hope the biopsy is gentle on you and brings good news of no new disease. I added you to my prayer list. I was blessed that chemo did not make me sick. I had fatigue a little but I would get chemo on thursday and go to work friday, my weekend I would lay around a little and felt well enough to go to work on Monday.
Flalady
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ibjennifer125 - like FloridaLady said, the BRCA1&2 tests are not just done, in fact most doctors don't order it as IBC is not known to be connected to the genes. My doctor did because of a strong family history of cancer- I only have 2 aunts left and one has a brain tumor but is doing fine and the other had ovarian/uteran in her 20's. My mom passed last year from lung cancer etc. You have to sign paperwork, and actually meet with a genetic doctor or 'counselor' who goes over it all with you first to make sure you understand what it is, and how it works. It was done at the same facility but can be offsite. It not only determines a family gene- in fact there is only a 50/50 chance of your offspring having it if you do, but it determines your own probability of developing ovarian/uteran cancer and breast cancer at some point in your life because it means that the genes are predisposed to it. It's not a guarantee of course, but being so young already with IBC I'm not taking any chances. The idea of getting regular breast cancer on top of IBC - like if i don't have the bilateral is worrisome. But- like I said IBC is not known to be associated with these gene mutations and alot of IBC patients do test negative.
I'm feeling better about it all today, and will do the hysterectomy. Because I'm on Taxol right now I think the doc will want to stay on course with that, then mastectomies, then radiation, then the hyster. I see her tomorrow and will find out the new plan.
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bettelou68 - I did take a look at your blog/journal, I really love the setup. I pray the biopsy goes well and they are able to determine what it is quickly, I know the waiting is hard.
I think chemo affects everyone differently regardless of diet because I made a new friend over the last few weeks who has IBC and goes to the same doctor, she eats super healthy exercises every day etc. and the chemo has basically made her bedridden. I got the exact same treatment, and though it wasn't fun and I got more migraines, I basically just kept going without any major events. I've been attempting to change my diet lately, and I need to get working out again too. Sometimes you just never know.
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chancensinsmom, I glad you like my website. I enjoy updating it and getting my feelings out in words.
Today Tom and I did laundry and went swimming. That made the time pass without thinking much about next week. I am going to go swimming as much as I can. The exercise is good for me.
Bette
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Hi Ladies....its time I join instead of just reading about everyone else's journey. I was diagnosed in February with IBC at the age of 39. I am a critical care nurse and my only risk factor was that I have worked night shift for 18 years. I do have an Aunt that had breast cancer 10 years ago but it was a different type and did not put me at risk. UGH! Anyway, the onset of my symptoms was quick. One week I had what looked like a little rash on my breast (I thought it was from my hubby's moustache) and a week to the day later that breast was huge, red, swollen. I went immediately to my primary Dr and they put me on antibiotics and sent me for a mammogram. One week after that I had a biopsy and I knew by the radiologists face that something was wrong. 2 days later I met with a surgeon, the next day with an oncologist and within 5 more days had a port placed and started chemo. It all happened so fast my head was spinning! I had 4 dose densing rounds of AC followed by 4 dose densing rounds of Taxotere. The AC made me feel sick for about a week but I never vomited thanks to Emend (great drug!). The hair loss was the worst thing for me but it wasn't anything a wig or cute hat didn't fix. The Dr had me take glutamine powder with my taxotere so I do not have any neuralgias/myalgias. And I did take neulasta 24 hours after every chemo. Basically, I flew through chemo. I had a double mastectomy 3 weeks ago and had 2 drains on each side and now I'm down to 1 on each side but one of them is still draining 80-100cc/day so it might be in awhile. The primary tumor that was >5 was totally gone on the surgical path report...not even visible under microscope- YAHOO! BUT the cancer was still in the skin and lymph channels. We knew about 4 positive lymph nodes and my preop CT/PET scan said "no cancer or spread" BUT there were 2 more lymph nodes that were found that were less than 1cm. Doggone it that the PET/CT isn't foolproof--only to 1cm!! Radiation won't be postponed once these drains are out and I will take Xeloda with radiation. Anyone else do that? But the big question is THEN WHAT? An ASCO article from May of this year says chemo after surgery (when I've already had neoadjuvant chemo) doesn't work. BUT because of my age my oncologist is willing to give me something...but there are no protocols, especially since I am triple negative (ER-, PR-, HER2-). She is suggesting the pill form of Xeloda for 4 months after radiation then we will wait and see. It is so frustrating to know there are cells swimming around...but are they dying, alive, resting? Who knows cause there is NO measuring stick for finding out. I did have a tumor marker test preop and it was elevated..much higher than right after diagnosis and my clinical exam was negative! My Dr said she doesn't routinely use them because they aren't as accurate as the marker for ovarian. She said there are PERP inhibitors on the horizon for the triple negative breast cancers (she said this fact is more important than it being IBC) and that taking more IV chemo now may preclude me from using those in the future. Anyone hear of that? What about twice dailly radiation instead of daily? Thanks for time and I look forward to posting more in the future!
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PS. I have a blog that chronicles my journey too:
wright-faithhopelove.blogspot.com
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cwrightrn,
Welcome to this website and glad you are posting. It brought me a lot of strength to read the postings of others while I was going through treatment as well. I can not help you with your questions regarding twice daily rads as I had it daily for 36 treatments, but I have read of others who went to MD Anderson and they had twice daily rads. Hope you continue to do well and keep posting and reading.
Diane
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Hello,
I'm sorry to join your group but today I was DX w/mestastic BC. Dr. wouldn't say it's IBC but I believe it to be. I'm scheduled for more tests next week. Surgeon wants to perform DMX but I want to be sure of my options first.
I have a question for you girls, I already completed 8 rounds of AC/T. Finished chemo in February. Now that I've got a recurrence, will they try the SAME chemo on me? I also am looking for a new Onc. What other chemo will they (or should they try)?
I appreciate any info. I just can't believe I'm here again.
Jeannine
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Hi Bonnie,
I haven't had the PET Scan yet. Surgeon is scheduling that now. He didn't say it was IBC but I believe it is. I do remember Onc. saying I didn't have all the rounds of AC yet. I'm just not sure about her TX and expertise.
I've contacted City of Hope.
Thank you. God Bless.
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g94u67
I see your triple neg...we are treated a little more aggressively. They will not reuse the same chemo since you had a recurrences those chemo's did not work. Since research on TN is still pretty new there are no set protocal right now. This means different doctor may approach this a difference way. Your next chemos will also depend on where your mets are. I have no organ/bone mets yet. (Have PET next week???) Here is my chemo history:
ACT (t-taxotere)
Gemzar, Carbo, Avastin
Phase 1 trial MDA Aroplatnium
Ixempra, Zeloda
Hyperthermia Dixol
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Bonnie, Thanks for Amber's website address. I was just there reading, and tried to leave a comment, but they were doing maintenance. She is so brave. I hope to have the courage to make that decision if there comes a time when chemo is no longer working.
I am about a week away from learning if I have IBC mets or primary lung cancer. It is time to pack for our getaway to Lancaster County AND our medical trip to Baltimore. Lat night I had a major panic attack thinking about it all, and Tom took off from work and held me all night.
Bette
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Thanks FLady. Surgeon stated same thing about previous chemos. Someone mentioned PARP inhibitors that are helping us TN's & BRAC+. Know anything about them or did you list?
Looks like I may get into City of HOpe. I'm so glad to hear you have no mets yet. HOpefully I won't.
Bette: Praying for no lung mets for you. We need some good news.
Jeannine
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g9u67
This is in very early studies right now. Most of the trials will not let me in because I've done too many chemos. I've seen some you must have had no chemos other let you in if you only have done a few. Search clinictrials.gov there are a lot of trials and a few for TN ladies. Some require you to be brac positive. Check the bottom of the page to see locations. City of hope is a great clinic.
Flalady
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Thanks Flalady.
I am Brac+ too. They're sending me to UCLA though. I didn't see any current trials there but I definitley will inquire and check your site out.
I wanted to go to City of Hope (closer to me) but Ins. won't cover. 1 hour consultation is $1075.50 but I'm sure worth every penny. I do hear great things from UCLA. It's got to better than my current TX.
Jeannine
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Actually that is my 4 year old grand daughter. One of the three biggest loves of my life. 0
