IBC lounge: roll call, support and just a good place to hang out
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I agree minimoocher. With a dx of any bc is daunting, inflammatory bc immediately brings out the gloom and doom. This thread has helped me to see past that, and know that survival is possible. When initially dx'd, I felt I would not make 6 months.
I'm 15 months past dx and so very grateful.
Due to a recent event, I've been helped to not focus on my possible mortality. On Dec 30. My DH had an allergic reaction to a medication. He was in the intensive care unit 6 fays. They say 5 minutes more and he would have been dead. My healthy, wonderful husband, and my caretaker of the last 15 months. A wake up call that nothing is sure or certain. To live life to the fullest.
Val
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Oh my gosh Valstim52, how very scary for you. I really hope that your dear husband has made a full recovery. Allergic drug reactions are so unpredictable at times. Thank goodness he was saved in the nick of time.
I really like your glass half full motto... I am of an optimistic nature too.
Mini x
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Hi! I'm so glad to have found this thread. When I read the good and the bad news posted here, it does bring me comfort in knowing I'm not alone and our journey continues. One very important little piece of my story is today, I am with a lovely partner (much younger than me) for the last 3 1/2 yrs., but in Sept. 2012 my husband of 26 years passed away after 5 1/2 months of fighting lung cancer which had metastasized to his beautiful brain so he did two brain surgeries, and whole brain radiation, but it was too little, too late. There were many things that were good with his passing, he didn't have much pain, nor have to face too often his biggest demon of anxiety from his fear of nausea and swallowing pills, and he died after smiling. However, his 2nd surgery was postponed 5 times. So when my current partner And I found a lump and noticed a rash at the end of June just school ended (I usually teach grade 3/4 and I miss my students very much) I begged the professionals to expedite diagnostic process and begin treatment chemo ASAP.
My fears have recently really been reactivated and I'm finding it challenging not to have tears in my eyes (oh just another SE from Taxol, ha, ha). I will have my last scheduled chemo tomorrow (taxol) (started late Aug. 2016 AC X4, then one dose of Taxotere (every 3 weeks) but I didn't tolerate it well (bloody noses, nail issues - low platelets), and so in early Dec. was switched to weekly Taxol (the SE of fatigue really messes my head up, I'm usually pretty positive and energetic...maybe some would say "hyper").
I was so excited about tomorrow a few weeks ago but now it seems so anticlimactic and I just feel scared. I'm quite fearful that the Taxol has stopped working, as last Friday evening the light rash seemed to have spread on my breast and I felt a lump in my lower breast. By Sunday, it seemed much better, but again tonight I'm unsure.
As we were suppose to go for a week to the Mayan Riviera for one last beach vacation (w/two "girls") between chemo and surgery (radical modified masetomy and removal of all lymph nodes) scheduled for early March, Feb. 13 looked like a good date, so I moved up both the appointments for the surgeon and my oncologist to next Wed. and nextThursday (instead of Feb. 13 and 14th). But then after thinking that Taxol had plateaue I felt too anxious to book anything (this summer we had to cancel a huge trip to Africa for the first time to visit my nieces in Nairobi, then Mombasa, Kenya and then Kruger NP, South Africa, we had everything planned and had rec'd all the vaccines). I'm finding this waiting game is excrutiatingly difficult for me. To have done so much chemo and potentially to find out it might not be working well (maybe last week should have been my last Taxol).
Luckily, I had a breast MRI last night, and my wonderful GP told me as soon as he sees the results he'll give me the heads up as to whether or not to go ahead and book this trip. And I guess both my surgeon and oncologist will either go with our original plan or make up a new one.
If anyone has any strategies, or advice on coping or jokes, please share.
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Welcome to the Lounge, MsSherman, that's really a great introduction although I'm sorry for all that you've been through. You'll find lots of help here, but it would be good if you could fill in the diagnosis and treatment section of your Profile so that people here can help you based on your individual facts.
All the best for the coming mx and do keep us posted on all results.
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Welcome to the newbies, bravenurse and MsSherman, we are so glad you have found us.
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Welcome to this thread, MsSherman, that is quite a story. You've been through tough times. We'll all be waiting for your results with you. Coping strategies for waiting ? mine are ..... lots of hugs and cuddles with hubby, listening to great music, listening to horrible murder mysteries for distraction, and long walks in a most beautiful place. Contact -- any and all contact with friends and family feels comforting. And dreaming of getting a puppy dog... I hope your wait is not too long.
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Hi, Traveltex, Meadow, and amarantha:
I was so confused last night, but when I got up I decided to make a lemon-poppy-seed cake (and then proceeded to leave it on the bench when my loving sister-in-law picked me up to bring me for my chemo). She said I didn't seem to be myself, 'cause usually I am positive and choose to find a way to live in the present. I told her about all my doubts, fears, and anxieties which were have been hanging out w/me lately. And she remarked I seemed hyper vigilant about my body (which she completely understood and validated) and this preoccupation made me confused and forgetful., she helped think of options and concrete plans.
It was very hard and I didn't want go......But knowing you existed (IBC survivors), and that I am very much unconditionally loved by my partner and his family, and my deceased husband's family and so many dear friends I chose to walk ahead and celebrate my final chemo of (AC + Taxol started in late Aug.) The nurses were very glad to see me, and my loving partner, Patrick. He worked thru his lunch so he could leave early, and picked up the cake. So we shared the cake with patients and nurses in all 5 pods. And I enjoyed the company of my sister-in-law, and Patrick, a pair beautiful earrings (sold by a 20-year BC survivor), dark chocolate, strawberries, blueberries and knowing it was the last time to wear those icy mits and booties, and drink ginger-ale to mask the horrible taste in the back of my throat when they flushed the lines to my port. I was the last one to leave but I RANG the bells LOUDLY and hugged my man while photos were taken.
Today, one part of the journey has ended joyfully. Tomorrow is another day. And I know I am very lucky in many ways. Following one of Amarantha's suggested strategy of distraction, watched an inspiring movie, which I knew my creative partner would thoroughly connect with called "Joy".
Thanks so much for listening and reading. I am so glad I found you all! Amarantha, many of your strategies are "tried and true", (bien fait -il me rend des resultats) they get me results (merci beaucoup). I will continue breathing in and out, and trusting myself, while observing, and listening attentively to others.
Sweet Dreams to all!
PS - I will keep everyone "abreast" of my situation as I get news😘☺️🙏🏼
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Wow, the best description of the final chemo I have ever read; the cake sounded delicious and the familiar company must have made the event just perfect. Congrats MsSherman.
Did you have any lymph node involvement? That's common amongst this group. Is radiation part of your treatment? Be sure to let us know the MRI results.
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Welcome MsSherman,
So pleased that you found us. You write with such clarity and humour, even in the harsh realities we all face. I hope that you get a little holiday before your mastectomy. I'll be thinking of you on the 13th. Whatever news you get try not to worry and overthink. We are here for you to sound off, rant, rave, whatever you need.
Virtual hug, Mini x
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Welcome Bravenurse and Ms Sherman. This wonderful group of people will help you through the ups and downs.
Unfortunately we're all here because of this awful IBC but we've learned to appreciate the real important things in life. I don't think about the far future, instead I've planned trips to the places I always wanted to go and I do things because I want to and not because I have to.
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MoreShoes, whenever you post a survival strategy, I take notes. I particularly like: "I do things because I want to and not because I have to."
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I agree totally Moreshoes.
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More shoes, thanks for sharing
I find this change in perspective of having to have myopic vision a bit disturbing at times, and it feels so heavy having to deliberately decide what is most important to me.
But maybe this is just temporary malaise as my red blood cells are so diminished from the Taxol and I am just fatigued 2 days following chemo.
I hope to feel 💪🏻 and regain some of my stamina In a few days.
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MsSherman,
I find the best way for me to cope with this nasty beast of IBC, is to not let it get to me.
I go to work, I take care of people, and I am open to talk about it to anyone that asks me, to me it is a form of therapy.
I was on on that AC, which zapped my energy, then the Taxol that has given me residual neuropathy to present, but only been off for 4 weeks now.
I had the bloody nose,bruised nails, low hemoglobin as low as 7.3, no transfusion, resolved on its own!
I have chemo brain which I joke about, I am scatter brained, like my menopausal and post menopausal cohorts.
My balance is off, but seems to get better when I stay active.
I had low blood counts, I just wear a mask, and keep on working.
I had large sores in my mouth, but found a great mouth rinse to use. I keep going! Some think I am crazy.
When I would get home, it would take me all week-end to recover, but I am ready to work by Tues (only work 4 days a week 8-10 hours.
My energy seems to be coming back!
I have so many cool scarves I wear to work and out and about, everyone looks forward to seeing what I will wear next.
I wear nail polish the glittery kind to hide my nails, if I don't they look like the devil!
I keep a smile on my face, and it makes me feel so much better.
My co-workers have t-shirts that read "Team Carol" on the back, and " I Wear Pink for Carol."
This keeps me going each day. My patients wear pink bracelets with certain articles that are pink, which they tell me it's all for you Carol!
This is bringing tears to my eyes while I type, but I feel so lucky.
My oncologist always has a smile on her face when she sees me, and she tells me I am doing GREAT!
I do tell her about my SE, but she tries not feed into it, I guess they keep you on the treatment as much as you can take.
Tomorrow I will see my surgeon in the AM and she will go over my PET scan from Friday, and will schedule my surgery.
Don't get me wrong, I have fear, but fear is only normal, I know I will make it through this journey!
I will let everyone know what my surgery date will be.
I advise to talk about your nasty IBS beast to as many, you will be surprised how much support you will get.
Good luck all!
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Hi everyone
Just when I start to think on a positive note, I get something to set me back. I'm post menopause, and now have scant bleeding for a few days. Going to OB/GYN tomorrow. I know she will do a vaginal ultrasound. Could be a fibroid, I have one I know of, but good grief. Will it ever end. Trying not to go off the reservation, because the future will come no matter my outlook, but i'm really bummed out. I've had this before bc and it was nothing, possible thick uterine lining, had biopsy and everything. Funny I had no worries then, but now not so much.
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Sorry for the new worry, Valstim. I know, you'd think you could catch a break, right? We are in your pocket.
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Dear Valstim52,
I was here feeling a bit hacked off since my periods have returned after all my chemo, I am 48, then I read your post. I'll be thinking of you tomorrow. Let us know how the appointment goes.
Mini x
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TT, I'm glad if I can help. I know you've been a big help and source of information the last year. Hopefully everything is fine at your side of the world.
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Val it has to be fibroid. Take deep breaths.
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thanks you guys., I appreciate it. Taking a deep one. I mean I had a PeT scan, taxol. If it is something it's gotta be early at least. Ok there I go.
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Sorry to here your having trouble,Valstim.Heres hoping it's minor. Going to doctors can be a drag or blessing. My thoughts are with you.
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Thanks everyone. My doc said we have to go through the usual, vaginal US and then if necessary a d/c. She and now I don't think it's major. Due to I had a similiar reaction to steroids before.
I appreciate your support and everyone else.
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YEAH! Finally some good news! I saw my surgeon and my GP to go over he comparative MRI, and there has been improvement both in the size of confluent mass in the upper breast, the auxiliary adenopathy has decreased w/ the largest node from 30 x 21 mm To 24 x 14 mm. There's still persisting diffuse skin thickening w/associated edema. But luckily no pectoral is involvement, which means maybe eventually I can go back and play volleyball, badminton, and swimming and golf.
Now that chemo us completed the surgeon, she concurred let's do this sooner than later. So we schedule tt for Feb. 23. And Patrick and I may go on holidays to the Mayan Riviera for a. Week starting Sunday, Feb. 2. This will be conffirmed tomorrow by the surgeon (she wants to check the schedule of a plastic surgeon who may help or guide as she plans to be aggressive in take all the infected skin) and the medical onocologicalist, who will also share his vision
It's been so crazy, but I feel much healthier. Thanks to everybody here. Your threads, comments, and stories have helped ease my mnds.
Thanks for all the support
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According to a recent blood test, I may (or is it, likely) have liver mets now. The text says "Data suggests that macrohepatic ALP is highly correlated with the presence of liver metastases and that the presence of this isoenzyme could be predictive of the appearance of liver metastases." Sounds like doctorese for "probably".
I received the results online about an hour ago and just now got a call from my primary care doctor's office just cheerfully saying the ALP is still slightly elevated and to follow up with my GI doctor as planned. Nothing about the evil macrohepatic isoenzymes.
Appointment with GI doc is in 10 days. I have some reading to do in the meantime.
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I get my blood test results (apart from tumor markers) online from Kaiser very quickly after taking the blood tests and always ahead of seeing my doc. Usually this has not been a problem, but I do wonder whether its a good idea if one day I see something worrying that I wasn't expecting. I am sorry for the worry you have been given. I really hope this is not a pre-warning of mets.
Are you referring to the ALKALINE PHOSPHATASE test. I have this as part of my Liver panel tests but was checking as I haven't seen it as ALP on Kaiser's system.
Mine went high when I was dx with Mets in Oct'16. However, it did remain high for a little while when my other indicators came down (after I started Arimidex) I did some research and I read that this might be connected o me I was taking regular does of Acetaminophen (Paracetomal as I knew it in the UK) as contained in Percocet (oxycodene and acetaminophen) as I had severe pain at the beginning.
My ALP levels have now come down to near normal levels, like my other indicators. But in the end I am thinking of the long game and take each day and test one at a time. Off for a CT scan this afternoon, how I hate that 'contrast'!
Hoping you get a negative result and stay free from mets
Sarah
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I hate the oral contrast myself. Spent hours in the bathroom half the night. Better be stable after all of that. Will find out tomorrow. Good luck with your scan Sarah.
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Yes, SCWilly, the ALP = Alkaline Phosphatase.
Mine is only slightly elevated but this last time, my PCP ordered an additional test that breaks down the different components. Bone and intestinal isoenzymes were low, and liver and macrohepatic were high. Liver had a normal range of 25-69; mine was 82%. Macrohepatic has a normal range of 0; mine was 12%.
The lab results do include the sentence "Macrohepatic ALP is seen occasionally in patients free of any disease state", so there's that.
I'm not going to fret. Que sera, sera.
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Scan done. Was a baby over the contrast as usual but managed to get it down and keep it down. As it happens, left my iPhone and iPad in the car so actually had a conversation with the others in the waiting room. Saw some lovely baby pictures, cheered with everyone when a sweet older couple got good news over the phone from the ladies doctor and speculated about one ladies accent (British or Australian) Shows how introverted I get with those pesky electronics!
ShyCat: Interesting they can do such analysis with ALP. Great attitude, life shows us all these twists and turns. My approach is that if something is happening then I want to know - even if I don't like the news.
We will all be in your pocket as you get more information.
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Got my results form my scan today. Doc said it was mixed. Nothing found outside of my liver, so thats a good thing. The large spot seemed to have shrink, but the two small ones have grown(they are around the 1.5-2cm size), and there's a new 7mm spot.
She's put me on Ibrance alongside Arimidex, starting tomorrow. Now need to research that and read all the posts from members about Ibrance.
Hope everyone is feeling well
Sarah
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Glad to hear nothing was found outside your liver, but sorry the results were mixed.
Hope the addition of the Ibrance can take you to stable again or even better NED.
My scans came back. CT of brain looks good. No swelling or new spots. CT of thorax and chest were clear, no mets. Abdominal scan was not in on Tuesday but cancer clinic has not called so I will assume no mets in my abdomen. No issues down there anyway. So far, looks like I am still NED below the head which is good and no issues from the brain. I'll take it for as long as I can.
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