IBC DIAGNOSED, LETS SHARE OUR STORIES!
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I intend to speak with my Dr about the gene thing. There is no breast cancer history in my family.
Reading everyone's stories is so therapeutic. I've not been very hands on with my illness - my daughter and husband have been the strength. I was hysterical the first week and my first words to my oncologist was "fix me" On our visits when he would go into detail about my illness I would hear words like survival rate and aggressive and I would zone out...that's all I could focus on was the negative sounding stuff.
I am cancer free at the moment and I have 13 radiation treatments behind me...21 more to go. I'm feeling more secure and able to start reading about my disease. Ladies, you all sound so brave and strong and each and everyone are in my prayers daily. We are all in a club we never wanted to be a part of and though we will never meet face to face we are bonded from here on out.
Prayers and Hugs to you all
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Walking in the footsteps of Giants....
This site blows my mind. I am clueless as to the medicines and what they do? I read and then marvel at how bright you all are. If it weren't for the internet and sites like these, I would feel like giving up.
I've requested a pysche. They asked if I was suicidal. I said no but I might change my mind later. I hope I'm joking. This is tough stuff. I told her I needed someone that wasn't emotionally connected to me. I don't want to worry about what their reaction might be, or the awkwardness or what they'll think of me privately. I can't afford any more guilt. Don't have time. I'm walking a fine line. Is this part of the process?
Oh yeah, my bone test was good/cat scan nasty. Basically said I have an orange in my breast and a cherry under my armpitt, haha and I have some spots on my liver. Great, now I have to look that up too. He said I needed to see the oncologist yesterday and schedule more stuff. I had to ask him if I had IBC. He paused and then said it was highly probable then he rattled off some tx blahblah. Isn't it a rare, I asked?. I was probing him to see how much he'd dealt with IBC. He failed to tell me what I already knew. You are in deep s--- and have a lick of a chance of a normal life. (Not in those words exactly, but I can understand that) We are going to have to go outside of the box on this one. Look under every rock. I'm just as scared as you are. That's what I wanted to hear. I did not want the textbook BC tx. I'm different, I'm special, I'm really sick. Just venting sorry about that.
I also requested a nutritionalist. I've been reading some pretty intense cleansing stuff and considering going to a 5 day clinic to detox. My immunne system is in ICU and I need to call in the pros. Have you hugged your colonoscopy today? I want one. I'm going to try a vegan diet and no sugars, no fun. I told you I need therapy...
Florida lady, please send me the info on supplements and the diet that worked for you. I'm keeping all my options open.
To CWRIGHTRN AND G94U67 and all of you whom have yet to join the party, We are the A team, we have our own clinical study here. Help us help ourselves! Get over being sad put that energy to good use, get mad! The more we share the more we empower ourselves. I promise to try my best.
Love you all warrior women!!!
Still in basic training,
Dani
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Dani--thanks for your post and your honesty. I think I have felt like you at one time or another. The first week of diagnosis was the hardest with the feeling of gloom looming over my head and in the pit of my stomach. I have a nurse friend of mine that was an oncology assistant manager for years and had never heard of IBC. In fact, when I first had symptoms she said "hey, cancer doesn't pop up over night." Boy, we both had a lot to learn. She has been a rock for me and has gone to all my appointments with me and my hubby....just another set of ears to listen and ask questions and help. Do you have someone like that? That might help as you navigate the maze of medicine. I know that having a relationship with God has helped too--I was raised in the church and have continued to have faith even through this....the valley of despair....and it has helped. We call our home one of faith, hope and love....and we cling to all 3! At the beginning of diagnosis...actually, until recently, I didn't want to hear anyone else's story because its hard but I have found this site to be so supportive that I wish I had the courage to look at it more before now. Last night I read the blog of the 31 year old gal that started this leg of the forum and here she is with 5 kids and on hospice--that's rough and quite frankly it sucks and is unfair. Grappling with some of that is still quite hard. BUT it is so nice to know I am not alone....there is a band of sisters who stand with me....all of us not wanting to be here....but we are. So hang tough! Prayers for you Dani!
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Bonnie
Thank you for the information and Amber I have been thinking about her lately. I will check out her web site.
Hugs
Laura
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Hi!
Does anyone have an address for Amber (sunneedazee)? If so could you please pm it to me I would like to send her a card.
I hope everyone has a great day!
Thanks
Laura
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Dani, You are in my prayers.
I am having an awesome time in Lancaster County and on to Baltimore to Johns Hopkins tomorrow. Biopsy on Wednesday.
Bette
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Dani,
I'm surprised they questioned you about wanting to speak to some that is not family???? Many patients want this same thing. I finally found a wonderful Christian based support group for any kind of cancer with men and women, They have been my main support, prayer warriors, go to the doctor with you or we help with meals and house work. Your right about finding someone who is not family or co-workers to talk too, someone on the outside and not repeating everything to family is great. I also have great support from a friend I have lost touch in and after I got sick she came back into my life and I don't have to worry about what I say to her.
I will send you my list this week.
Ladies I hope everyone has a good week. I have a PET scan Tuesday..,:(
Flalady
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Flalady, Prayers on your PET scan today.
We are at the hotel in Baltimore, getting ready to take the shuttle to Johns Hopkins for my consult with the pulmonary specialist. This morning I studied Bible verses on hope. I have hope for all of us.
Bette
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Flalady,
Praying for a clear PET scan for you today! I will be having mine on Friday
. I'm so scared. Giving this to God.Bette: Thinking of you today on your trip to JH. Praying your visit & test goes well. I have a lot of hope and faith for all us too.
Oh Dani: What a story. My prayers are with you! Thx for the sisterly welcome.
Hugs & Prayers,
Jeannine
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Ready to leave for the hospital for broncoscopy and biopsy. The trip to Baltimore has gone well so far, and the staff at the htel are very helpful. Will try to update you all after my test. Time to go. Please pray!
Bette
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Dani- you are stronger than you think....
I'm doing well. I have 14 Rads behind me and 20 to go. I am cancer free at this point, but like all of us a re-occurence could always crop up. Speaking of diet...my oncologist talked to me recently that he wants me to educate myself about eating properly in an effort to keep my immune system healthy. In the meantime my nurse cousin recommended a book called, The Makers Diet. It is very interesting about how God intended us to eat to keep our bodies healthy. I got the book on Amazon.com.
q94u67 and Bettelou68 - special prayers for you and your test results.
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Am back at the hotel with a scratchy throat and cough. Enough "abnormal" cells were retrieved for a biopsy.
Tomorrow it is home to PA to rest and wait for the pathology report on Monday.
Bette
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Bette:
Keeping my fingers cross for b9 pathology. Have a save trip back to PA tomorrow.
Keeping you in my prayers.
Hugs
Laura
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Thanks, Laura. We had a safe but rainy trip back to PA, and now I can recuperate in our own bed.
Tom did all the unpacking and even the laundry. He is so good to me.
Still looking to the Lord for His peace during this time of waiting.
Bette
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Today I feel recovered from the bronchoscopy, but am still tired. They used a procedure called EBUS( endobronchial ultrasound) and were able to biopsy the lymph nodes in my chest as well as the lung lesion. Before EBUS they had to do more invasive procedures to get at the mediastinal and hilar nodes. This will help them in staging my cancer, if it is lung cancer, and will also show if I am a candidate for surgery to remove the lesiion. If there is cancer in the nodes, it is back to chemo. :-( Bette0
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Bette:
Keeping my fingers crossed and praying for b9 results.
Hugs
Laura
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Hello all
Chasensinsmom, your story sounds just like mine, even the time of diagnosis.. I have completed AC, and am starting Herceptin again on Tuesday, I am allergic to Taxotere, buy my Onc wants me to try another taxane with H on tuesday... we'll see how it goes. I'm going to have a bilateral mast and total hyst after Labor Day. I hope all goes will with you! Please continue to post, you are in OR, and I am in WA, and we are both in our 30's.
Dani52, I know the beginning is very difficult, it seems like when you tell people you are put into a position of helping them feel better, like everything's going to be ok, when it should be the other way around. It does get easier, and knowledge is power when it comes to IBC!
Bette, I sure hope you are doing well, I've been praying for you!!
Much Love! Jessica
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My story is that this morning I received a phone call confirm that I have metastatic IBC, Stage IV. Trying to decide what to do next.
Have an appointment with Johns Hopkins onc on Wednesday.
Tom just held me while I cried. He is such a rock during this time. What we are both afraid to say, is that we don't know how much time we will have together.
I am choosing to praise God, and live according to His plan.
Bette
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Plan for the worst and hope for the best!
This is the motto for our Civil Defense here on the Big Island. In the wake of many impending disasters ie, Flooding, Hurricances, Earthquakes, Floods, Tsunamis, and yes Lava too, their job is to announce the dangers and cautions we need to take to best protect ourselves. It's what I grew up with, it's in my genre.
So when the doctor said I have Metastic IBC Stage IV, 1 year, I was not shocked. I had done the research and surmised the outcome. I had prepared a boat load of questions in anticipation of this and to skip pass the crying, [already did that with the therapist.] and get down to business.
My questions revealed that I am his first IBC this year, he said he can count on one hand how many he has treated in his career and none of them are alive right now. Great. By the end of my list, I came to the hard ones. ? 37. If you had 1 year to live, would you choose treatment or quality of life? ?38. Will you support me, if I choose to end treatment at some point. ?39. Will you allow me to make decisions about my treatment?
So when he asked if we could start chemo next week, I said not yet. I needed a little time to accept this prognosis and to talk with my family and weigh out the consequences. If I had to stop working whose going to pay for this, etc. I had already scheduled a 2nd opinion with an alternative doctor for today. I'm hoping that my treatment alternatives may be better or that she has a better record than my oncologist. I may still opt for chemo and the traditional treatment but only after I looked at alternatives as well. I've been on a no sugar diet because that's what cancer feeds on and am working on balancing my ph. Has anyone tried any of these?
Sorry warriors, looks like I'm headed for special opts, on covert assignment. I hope I'm successful for all of us!
Your love empowers me to fight, oncologists if neccessary,
Dani
Bette, I'll keep you updated on any info that might help. Jessica, thank goodness for therapy, she's one of my biggest supporters. I'm still very careful about who is in my circle. Jennifer, I'm going to check out Border's today for the Maker's Diet, thanks. cwrighturn, I also am deeply rooted in God. I have a wonderful support system, just waiting for me but I'm the problem. I am selfish in wanting friends to treat me like they normally do and not to needle me about every move I make. I guess I need to get over it. I tried to leave a message for Amber but no luck. Any suggestions?
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I went to therapy and cried today. then I came home, washed my face, put on makeup and went out with friends. It did me a world of good.
Also got a cute haircut today. Picture later.
I am choosing to rejoice in my God, who has all these things under control.
On Wednesday I will see the oncologist and develop a battle plan.
Bette
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I'm just as scared as you are.
Hi Bette,
I just got back from my 2nd opinion doctor's appt. She has worked with many stage IV cancer patients in various levels of chemo. She said at the minimum I should definitely be working on cutting down on sugars, bringing my ph up and take some Essiac from Canada only, Stem Enhance and some literature on Avemar. In addition to take 4000m. of Buffered Vitamin C daily. Also Bragg's Apple Cider Vinegar 2 oz./Apple Cider 2 oz./Fresh Squeezed Lemon 2 oz. 1x after breakfast for 7 days.
We're checking my thyroid as well, as I know that's out of wack too. Some blood work for Cortisol, Estradiol, Progesterone and DHEA levels. Also T4, Free and T3, Free, TSH and Occult Blood, Feces. Doesn't that sound yummy? Anyway, she's a kind of country doctor and used to practical medicine. I like it but won't stop there. She also suggests looking into chinese medicines. I've used them in the past and will see what might help.
I found a clinic that does breast thermotherapy?? Not sure but I'm going to check it out too. I let you know the whatever I find out. I know this may sound extreme but I'm determined to look under every rock.
Love to all my sisters and to especially to you,
Dani
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Sorry ladies for your met news. Don't give up because of mets. My ibc went into remission for two year and than only local spot now back into skin. I've had a good quality of life for the most part and continued to work until this month. You can have a life with mets and still enjoy many things. I would check out the alliterative thread because I do believe that my research on alternative kept me strong and had very little side effects. My QOL is going down right now because unbelieveable pain with cancer and lymphedema in my arm and more involved skin mets.
Dani see your PM for my diet and other info.
Flalady
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Still a Rookie
Hi Floridalady,
Thank you for your kind words of encouragement and for sending me your info. I just wish I knew how to open it. I found the PM page but have no idea on how to read your post. Sorry, but could you help a rookie find her way?
I am very sorry for the pain you are in and wish I could take some of that away from you,
Dani
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Dani:
All you have to do is click on the private message tab once that is open click on the subject and it will open.
Hugs
Laura0 -
Bette:
How did you doctors appointment go?
Keeping you in my prayers.
Hugs
Laura
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The onc at Hopkins gave us a lot of hope, and told me to go home and live my life and not stress out about this too much.Treatment is not set right now. Possibilities include a trial with PARP inhibitors, Xeloda or Carboplatin. Anyone know anything about these?Also, my cancer profile has changed. My estrogen receptor is so weak, that he said I am practically triple negative and would not benefit from hormonal therapy.I have to have a bone scan to check out some pesky achy ribs on my cancer side.That is all for tonight.Bette0
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Hi,
I was diagnosed with IBC on July 16, 2009. I was shocked because of the little bit of time that it took for this to come on. I noticed soreness and a lump in my right breast in the latter part of June. My nipple area was very tender, but no rash or sores. I had some shooting pains under my right arm and it was pretty sore. I went to my PCP on July 3rd and he set me up appointments for diagnostic mammograms and ultrasound at a very good hospital, here in Wi. Anyway, from that time on of my first mammos on July 9th, things have just been going by like leaves in a windstorm, which I am very grateful for. My doctors and I wanted to spare NO time with this. I had biopsies on July 16th, which confirmed cancer. The 17th, I saw an oncologist., which was a Friday and on Mon. the 20th, I had my CT scan and MRI. The 21st I had a heart test to make sure my heart was strong enough for chemo, which it was, and I started chemo the very next day on the 22nd.This has all been such a shock to me, but my husband and I are determined to attack this with everything we can.I am scheduled for 16 wks. of chemo, followed by surgery, then allot of radiation after that. This truly will be a long hard road for awhile, but it can't be rainy and gloomy EVERY day, the sun will shine again soon.
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You've got a winning spirit KM. It is such a shock. You will get through this and there is a lot of good info and wonderful support here. I wouldn't have made it this far w/out my wonderful bc sisters.
Now I'm part of the IBC sisterhood. PET Scan lit up in 3 places. (As expected) but it's still localized. Now I'm waiting for another referral. So frustrating! The Dr. referred @ UCLA is on med. leave. Hello! I've just got to take this 1 day at a time. I'm ready for round 2.
Love to all,
Jeannine
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Jeannine, I am ready for round two as well. Hang in there with waiting for your doctor appointments. My appointment at Hopkins was worth the wait. I will pray that the doc at UCLA is encouraging to you.
My PET lit up in three places as well. So glad that yours is localized. I am now Stage IV. Planning to fight with everything available and live my life to the fullest each day.
Bette
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I do not have an address for Amber but her blog can be googled amber chase cancer musings
God Bless Amber xxx
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