IBC lounge: roll call, support and just a good place to hang out
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Dear flo80, yes, THP is not an easy regiment but some people get "used" to it pretty quickly. Not my wife though - I used to administer her 3-5 day Neulasta shots. On the other hand… always remember, if you suffer, suckers suffer too, and THP is a very powerful combination. Keep us posted and I wish you strength to endure everything, fix everything (you will), and go on living and being happy and cancer free(will be)! Many hugs, Saulius
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Thank you so much I needed thi!s
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Hi flo, sorry I don’t know much about the meds used for her2+ as i was triple negative and the meds are a bit different. I’m hoping the cocktail they have you on destroys that one spot as well as any possible remaining cells that might be floating around! Also wanted to throw this out there, idk where u live but winter time where I am means less sunlight and when I had my vitamin d level checked during treatment it was low, so my onc recommended i start taking a vitamin d supplement. Turns out there’s evidence that correcting low vitamin d has been linked to better survival rates in breast cancer, as well as improving immune function. I continue to take it daily, especially in the winter. Just a thought since you mentioned your neutrophils dropped it made me think of that and might be something you could look into. Anyways I really hope you’re feeling ok and hang in there. Hugs :)
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preciousbecky23 thank you. Will definitely check my vitamin D level. I went to work yesterday and my manager mentioned that I should take care myself and take short term disability leave. I was like what will I do at home it will make me even more sad. I know she meant for my wellbeing but still I was very emotional
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Hi all. I have survived 34 years since my stage 3 B inflammatory breast cancer diagnosis. Several rounds of chemo, surgery, more rounds of chemo , radioation and then an autologous stem cell transplant amounted to almost two years of therapies given. I lead a normal life now and am thankful everyday that I survived these decades..
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@katelynn50 that is so wonderful to hear!! Thank you so much for sharing your survivorship experience with us.❤️
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Dear Katelynn50,
Wow, congratulations. May I ask - what's behind autologous stem cell transplant - was it one of the BC treatments? Hugs and congrats again,
Saulius
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@katelynn50 I am very happy to hear you went through treatment and came out the other side as well. 34 years post treatment is a feat as well.
I am still here, 10 years post initial dx of IBC. Apparently it does well with chemo. Went through the rads, initial chemo and mastectomy. 9 years ago, 10 cm tumour found in my brain, craniotomy and whole brain radiation followed. That really sucked. 7 years ago, bit of mets grew back, 5 rounds of rads, only aimed at the mets. Since those findings, been bopping along fairly well. Almost a year ago, a blood pool was found in my head but we are watching it and doing nothing as it has not grown so I am unconcerned. Stage IV means never getting a break but I only take Herceptin and it seems to have taken care of it, no other mets than the brain have ever showed up so that is good.
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@mara51506 I love your story and you are amazing. All that time on Herceptin is also a fantastic thing. That drug is a real match for you, and cancer-free below the neck, as you used to say, is a real achievement.
I'm still cancer free (breast and prostate cancers) but developed a condition called Necrotising Auto-immume Myopathy last December. It was a side-effect of being on stations for 8 years. It's basically a muscle wasting disease .Anyway, I'm on the mend after two infusions of a drug called Rituximab.
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TT, glad to hear your cancers have not come back, I am sorry you developed that disease but glad that your new drug has you on the mend. In your pocket lending support and warm thoughts. I am still cancer free from the neck down, brain shows nothing either other than enhancement which is not indicative of new cancer and the silly blood pool in my head, that has been there a year. Oh well, nothing to worry about for me at this point.
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Hello all. I just thought I'd check in. I'm now 4.5 years out from my IBC adventure and so far, so good. I saw my oncologist last month and he has altered my checkup schedule to only once per year going forward. I'm struggling with joint pain and the never-ending muscle spasms/cramps, plus a dash of lymphedema… but I'm still standing.
TT—I'm sorry to hear of your latest (non-cancerous) diagnosis and I hope you manage OK.
Mara—it's nice to "see" you still doing well.
I hope all the IBCers are doing well. Last year I joined an IBC support group on Facebook that is active with a lot of participants and information. Sad that this place has become practically a ghost town since the "improvements" were made. This was a beacon of hope for me when I was diagnosed but wow, have things changed.
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So good to hear LW. Once a year. Wow. Just like with birthdays!
Yes, time was BCO was it, but social media sites took over and they are fine.1
