IBC lounge: roll call, support and just a good place to hang out
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Thank you TT, Sbelizabeth and Lori for posting about Amarantha. It's makes me again so sad. No one will know how important she was on this forum.
TT, I hope you also write about Purple minion in your article. I miss her.
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Hi MoreShoes. I don't have any more details about PurpleMinion, unfortunately.
We were fortunate enough to have news of her Passing, and I've reproduced the posts here.Jul 20, 2016 06:19AM Geeper wrote:
Hi everyone, it's been awhile. I hope everyone is doing okay.
I don't know how to tell you guys this and lost for words. So, I've copied and pasted what PurpleMinion's husband posted on FB. She was so uplifting and encouraging. Everyone on the FB IBC Terry Arnold site is devasted by the news. 😢
July 17, 2016 9:45am
It is with a very heavy heart that I must tell you that Julie passed away earlier this morning. She had gone to the ER again on Friday with extreme shortness of breath and rapid heart rate and was admitted to the hospital. She went from a normal room, to the Acute Care unit and eventually to the ICU, all along with more and more labored breathing and a weaker pulse. The ICU team did their best, as did Julie, but it was eventually too much for her.
I'm sorry if there are some of you who I should have called directly instead of posting here, but it's all a little hard to handle right now.
Jul 20, 2016 07:31AMMoreShoes wrote:
Oh Geeper, thank you very much for posting this. I was so hoping and praying for her to make it but it wasn't meant to be. She was so young.
Jul 20, 2016 07:36AM Traveltext wrote:
That's devastating news Geeper, thanks for posting here amongst her closest BCO friends. Despite being triple neg and IBC, with widespread mets, Julie never stopped supporting the IBC crowd, lately under the name PurpleMinion, but previously, as many will recall, as Mamiya and Notdoneyet. Julie started this thread in April this year to replace the "This ain't Facebook" IBC thread that disappeared when Bon left.
PurpleMinion will be sorely missed here, but I can only imagine how those who knew and loved the real Julie are feeling right now.
Jul 20, 2016 07:45AMValstim52 wrote:
Oh Geeper, so sorry to hear this. I remember her wonderful post under the other names mentioned by traveltext, and despite her outlook being grim she was so supportive of everyone.
Our heart and prayers are with her friends and family.
Val
Jul 20, 2016 08:02AM Geeper wrote:
MoreShoes, I did not know how to deliver the news, but I do know that she would want you all to know. She loved this group so much! We were all rooting for her. She was diagnosed in June 2015. She leaves behind her beloved husband and 16 year old daughter. She wanted to see her graduate from high school. This was totally unexpected. She had been in and out of the hospital this month for fevers, shortness of breath and rapid heartbeat. We don't know what caused this. So many unanswered questions. I know to well about life being so fragile and precious. My beloved husband (my cheerleader, soulmate, and caretaker) was diagnosed 05/18/16 with stage IV lung cancer and passed away peacefully in his sleep on 06/12/16. Less than a month after diagnosis. Still trying to find answers and remaining strong for my kids. Just feeling numb right now. Too much devasting news.
Jul 20, 2016 08:11AMGeeper wrote:
Traveltext, yes PurpleMinion (Julie) will be sorely missed. Her and Bonnie were the 1st to reach out to me when I became a member of BCO community. Julie was so full of life and brought awareness to IBC. She was so knowledgeable and provided great input. She wanted to achieve NED status and wanted to live. She was being treated at Northwestern at Chicago with one of the best IBC specialist in the world, Dr.C. May she rest in peace.
Jul 20, 2016 08:23AMGeeper wrote:
Hi Valstim, yes she was so supportive of everyone. She is going to be missed. I loved her kind spirit. I feel bad for her family. You feel numb, in a fog, and bad for your kids. Your kids hurt so much and you wish you could make it better. My husband passed away 06/12/16 and this takes a toll on you mentally and physically. My son in 15 close to Julie's daughter's age. Julie's daughter was so close to her and my son close to my husband. You wish you could take their pain away. My heart breaks when you see both your kids cry. They have anxiety and nightmares. So, I kinda know what her family may be going through right now. It's upsetting.
You cherish their wonderful memories and live life to the fullest.
Jul 20, 2016 08:55AM sbelizabeth wrote:
My heart is so sad. I hope death came to Julie, as hope it will come for all of us, like a tired doe laying her head into loving hands.
Jul 20, 2016 08:59AMValstim52 wrote:
Oh Geeper I'm at a loss for words on your loss of your husband. Know that I hold you dear in my thoughts and your family along with Julie's.
Val
Jul 21, 2016 03:58AMbride wrote:
Geeper,
I, too, mourn Julie's death. If you can, please pass on my condolences to her family.
Johannah
Jul 21, 2016 05:36AMGeeper wrote:
sbelizabeth, "The Life of Death" is beautiful.
Valstim, thank you!
Hydranne, thank you! You are right about Julie, she was compassionate and full of life.
Bride, I'll pass your condolences to her family. Please don't think you have an aura of illness that is contagious. It seems like now in days everyone is getting cancer. I don't know what is going on, but I've had several of my friends recently get diagnosed with cancer.
Sending you all hugs.
Jul 21, 2016 06:37AM Traveltext wrote:
Geeper, I'm very sorry for you having lost your husband and for your son having lost his dad. Yes, cancer is everywhere bride, but most of us will die with it rather than of it. Very much looking forward to reading your essays.
I was hoping Julie's family would agree to leaving this thread up on BCO as a memorial to her. Perhaps, Geeper, you could ask them.
Jul 22, 2016 02:37AM mara51506 wrote:
Sorry for posting here but wanted to post my condolences to everyone who was close to PurpleMinion. I also want to send my thoughts out to you Geeper as I am so sorry to hear of your dear husband's passing as well. It is all too much sometimes indeed. My thoughts to everyone here who knew Purple Minion and of course her family.
Jul 22, 2016 02:01PM Meadow wrote:
Oh my goodness, I just saw the news about Purple. So very sorry, she was SO BRAVE. Just so wrong. Just so sad. My heart goes out to her family. She will be so missed here. Love you Purpleminion
Geeper, my condolences to you sweet lady. SO sorry for your loss. Just so sorry. Hoping God can comfort you and your children.
Jul 25, 2016 01:15PM jessozzie wrote:
Hello friends,i just read about Purpleminions passing,its just so unfair this dreadful disease,i had chatted with her a while back and she seemed so positive,this really shocked me!! We must band together to encourage the medical people to find a cure.
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I think she had a 14 year old daughter.
That's the thing, here we're a nickname, an avatar, treatments and illness. We're all so much more than that. We had a life before we became sick and a different life after that.
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MoreShoes. You're so right. It's too bad to be defined by your illness when, as you say, there's so much more to us. That said, there are groups on BCO where people have shared their common interests.
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Just checking in to say hi. Still working through my brain bleed/stroke issues, my excellent neurosurgeon is referring me to an even better neurosurgeon at a different hospital system and I need yet another type of scan of my brain (this will be the 4th kind). And a couple days ago my husband accepted a job in Wyoming and he needs to be there at the end of the month, so I may have to stay behind for a while to take care of my brain on my own (I will likely need surgery to repair the damage, ugh). My last infusion was 2 months ago so I'm getting a bit nervous about that too, but my oncologist and I aren't seeing eye to eye.
Lots on my plate right now, feels like my head might explode. Really wishing I had family near by to give me a hand. Don't worry if I get too busy to check in, it's been hard to find time to log in on my laptop lately. TT knows where to find me.
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I’m sorry what you’re going through Lori snd tgst you have to be alone at a time like this, I hope your brain surgery’s go well. Prayers
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Hi Lori,
What a tough time to be dealing with a relocation. I can't even imagine. Do you have family who can come and stay with you to help you during your surgery?
You are amazingly tough!
Wishing you the best,
blue
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Hi Lori I am so sorry you are dealing with this. Prayers and hugs to you. You are a warrior and you will beat this. Lots of love Flora
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Blue my family is all on the opposite coast, no one close to help out. If it's radiosurgery it shouldn't be bad, and a friend from my support group has offered to drive me to/from hospital. It'll work out.
I'm still waiting for everyone to decide what to do with me, if I even need to have the surgery, what my next treatment should be, etc. If I'm going to start a new drug I'd rather do the first dose while I'm here at home in familiar surroundings, even if I am alone, than start it while staying in temporary housing and not having the comforts of home.
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Hi everyone,
Just checking in.
Lori- so sorry to hear about your headaches and brain bleed issues. You already have so much to deal with, it is just not fair. Big hugs coming your way.I am glad you have help to/from hospital visits. I hope you get amazing support, sucessful surgery and an abundance of additional strength. I admire your tenacious spirit, gift of knowledge and your openess to share your experiences. Thank you for being you.
Hi Blue, Flora, TT and SB hope everyone is well and staying safe.
My sister will be having her surgery this week after all. The surgeon at one point was contemplating having radiation prior to surgery due to skin redness, and swelling. But the tumor has shrunk and they are satisfied with chemo response. SO happy to be one step further. Thanks for listening ans all your support.
Take care
Shela
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Dear Lori I wished I stayed nearby. Can’t imagine to go through this alone. We are all here praying for you and Lori you are a champ. You will beat this and virtual hugs and positive thoughts and prayers sending your way.
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Beautiful and spot-on, TT. Once again, I'm shedding tears for Amarantha, and the other lost friends here I'll never meet. Thank you for sharing this. SB
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Thank you Shela. Good news that your sister responded well to chemo and can have surgery now.
Will be starting Enhertu (DS8201) as soon as insurance company approves. Haven't heard back from neurosurgeon yet and wondering if my insurance company doesn't want to approve a fourth scan on my brain. Made an offer on a house in Wyoming today. Putting my house on market Monday. So busy I can barely think straight right now, but I blame it on brain damage!
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Lori, your to-do list reads like a complicated novel! Where in Wyoming are you buying your home?
When we sold our house in California, I wish we had just spent the money and HGTV'd it before it was even listed. We figured we could offer prospective buyers a bucket of $$ to replace carpets and paint to suit themselves, but no. Our realtor said everyone looking for a house on the real estate market today wants it to look move-in ready.
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Lori, it’s a novel or a soapie, I’m not sure which. Your medical interventions should be a priority and I hope you can get your scans, new drug, and any necessary surgery happening before to head off to Wyoming.
Shela, that’s such good news that your sister’s tumor has shrunk so that surgery is the next course of action. I was worried that radiation may precede this. Radiation could well be used afterwards, as this is usually given as “insurance” to mop up anything that might be lurking. It was with me, and here I am six years later.
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Hi Lori, Traveltext
Yes very happy that my sister was able to get the surgery without delay. I was worried too ! She had her surgery on the 12th and so far so good.Step by step she is getting there, and in good spirits.She has actually developed a great sense of humour during her treatment and has made me laugh out loud a few times. We have cried, laughed, yelled, cursed and I think it has helped. She is following up with RO,MO and will be getting further Perjecta, Herceptin infusions. In the meantime, she is healing from surgery and is mentally ready for the next treatment. Hope the radiation cleans house! Thanks TT for your encouragement and positive outlook. Lori, I think of you often and wish you well always.
Hope everyone is staying safe
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Shela, it’s fantastic that you are advocating so well for your sister. This treatment process is both stressful and difficult for all concerned, and I love it that sis has a sense of humour thatis combined with all the other emotions to make this process better for all. So, are there drains to contend with post surgery? The good news is that rads do clean the house!
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Hi Traveltext,
A sense of humour definitely helps! Yes, my sister has drains and she is monitoring the amounts of fluid. Luckily she has 2 nieces that are RN's that have come by to check up on her bandages and drains. I have to admit, this forum has been my main source of advocacy. The honesty and real life experiences far surpasses " Google ". Any questions I have, are usually answered here. Thank you friends because you are more to me than just members! I will keep you posted on her recovery and her rads.
Stay safe and healthy
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Traveltext: By the way, I read your article and it was a beautiful tribute to Dear " Amarantha " Well done and Thank you for being our advocate.:)
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So glad to hear from all of you... Smiles here too:) Saulius
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Dear Lori,
How are you? I have been thinking about you a lot.
Regards
Flor
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Yes dear Lori, how are you? And others? Saulius
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Well- for those 'old' and 'new' - I thought I'd check on and let all know.
It's now been 11 yrs since my IBC DX - I'm still 'here' loving life and living every minute to the utmost. A year after DX - ALL my DRs told me that they never expect me to make it to a year post DX - fooled them
!Still very active - riding (bicycle & horse), fly fishing (tie my own flies), taking care of my yard (because of our drought and high temperatures this year it isn't looking 'good' and I haven't been able to mow it with my little push mower as I usually do), not to forget my tatting, sewing, leather carving, etc. I'm also involved with our local Museum as a volunteer and Board member.
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Hi Kicks!
Thank you for your post - I think all of us really need to see posts from people like you from time to time. It helps us know that there are outliers to the grim out of date stats.
I hope everyone is doing ok in these crazy times.
A bit of an update from me for anyone in the future reading these posts to learn more about the "journey". I finished capecitabine (Xeloda) about a month ago and have started AI. I only have one more HP infusion left!!! My energy level is getting better, I no longer need naps every day, but still am tired in the afternoon, and I sleep in every morning. My body is stiff and tired in the morning, and I honestly rarely wake up feeling refreshed. My fingernails and cuticles are actually worse than I think they were on Taxol/AC - not sure if that is from the Xeloda, the HP or a combo of both. Feet are recovering from Xeloda slowly, though I still get burning from time to time and cannot take long walks (~3 miles) yet. Fingertips still hurt after typing for a few minutes. Lastly my left side (mastectomy/lymph node removal) ended up with what I guess are adhesions a few months after radiation - around the time Covid starting shutting things down. Basically it feels like the skin is glued to the ribs. I am working w/ a physical therapist and that is getting better.
Sorry for the long post but I personally found it helpful to read through other peoples experiences! It sounds negative, but honestly it is all good because I am improving in how I feel overall. I have no idea what "normal" will be like in the future, but I will take what I can get!
Wishing everyone else here well! Please post updates!
Blue
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Hi Kicks thank you so much for posting. Congratulations and wishing you lots of happiness and good health
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Kicks, thanks for updating us. Eleven years is a fantastic milestone. Love all your activities, home chores and your volunteers with the local museum. Keep it all up.
Blue22, you're right, reporting here is very useful for others and you've always recognised this. At the 18-month mark, you are dealing with contra-lateral bc and still in the thick of treatment. While all your tribulations are in the text books, I'm really sorry that you are dealing with so much. Take it rom another IIIB patient, things do improve..
I'm now six years post treatment for IBC and four years post treatment for prostate cancer. When people find out I have both these cancers, they must think I'm a freak. But, I'm not, and like Kicks I not only have lots on around my home, but I'm very invested in the community as president of my local resident association. Plus, I'm very active on Twitter as a patient activist for men with breast cancer, and I have a paid gig writing regularly for a US health website.
I have a fair bit to do with Lori on Twitter and I know she will report in once she's gotten over a house move.
What a crap year 2020 has been for the world. Stay safe everyone.
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Thank you Travelnext. Please convey my regards to Lori
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Hi all,
Just an update: DIEP flap surgery went really well, didn't find recovery so bad at all. I've already lost 10+ pounds since, have been really motivated post surgery.
Had follow ups with all my doctors and surgeons the past two weeks, as well as scans, etc. - it's still hard to believe that I've been dealing with IBC, thyroid cancer and melanoma all diagnosed and treated at the same time. Only slightly anxious part was dermatologist's full body scan today, he removed something suspicious from my thigh to biopsy - fingers and toes crossed.
I did ask my onc about research re: statins and IBC.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC37213...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC40738...She said "Both from very reputable IBC teams. Only retrospective data but a prospective trial will never be performed - although they suggest it - as so rare. I would say go for it."
Now going to try to convince my PCP to give me a prescription for simvastatin. Anyone else taking a statin off label?
Always thinking of you all and hoping everyone is feeling as well as can be.
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Bklynstoops, glad to hear you're recovering from your DIEP and hoping your skin biopsy is negative.
The pharmacological salad I'm taking is pretty much all related to breast cancer. Letrozole made my cholesterol skyrocket, so now I'm on a statin. Statins raise blood glucose, so to prevent type II diabetes I'm on metformin. Letrozole causes joint pain so I'm on meloxicam too.
When I started metformin years ago, it was off-label. I showed my oncologist some research that metformin might help prevent recurrence, and she was OK with it. Since statins appear to be such effective drugs at reducing inflammation and preventing adverse cardiovascular events, I hope you don't have to do too much convincing. Why can't your onc prescribe it? Do you have to go through your PCP?
I wasn't aware a statin had anti-tumor properties but glad to hear it!
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