My Husband, My Life, My Love, My Family, My Cancer
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New to this forum. Second round of breast cancer. I now have it on my liver, L2, lung and a spot on my incision from the double mastectomy. My oncologist put me on Ibrance 3 months ago and I got my scans back this week. Significant improvement with some tumors even resolved. I feel very fortunate and I hope things continue to improve.
On another note, I have had some hair shedding with the Ibrance, but found this new product that really seems to be helping. It is a leave in conditioner made from chia seeds. I've been using for about 3 weeks and a vast decrease in hair loss. If anyone is interested, chiacurls.com
Also been tired in the evenings, but haven't really found a solution to that. No doubt my white blood count is down. I've tried moving the time I take my medication, but found that 6pm seems to be the best. At least it is helping me sleep.
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Oh, moth, this sucks! If you can read this, WE LOVE YOU!!!
Carol
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Cathy~welcome to our living room. I am also on ibrance. And the fatigue is something else. It's worked well for many. I'm starting my 59 cycle of it. I did notice a little hair thinning. Thanks for the tip and welcome.
My doc said I strained my gastrointestinal system bystraining from constantly struggling with my bowels. She said my intestines are swollen and irritated and that is causing gas and pain. I'm feeling better today for sure. She said soft diet for a month. My insides feel like I did 300 sit ups in a minute.
Love to all of you. thank you ladies for conveying moths needs. If we can help in anyway. I'll be watching. Good night. Maybe. Insomnia is persnickety!
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moth - my heart hurts for you. I hope this chemo turns things around for you. Cancer is so unfair.
Cathywh59 - welcome to the group. Thanks for the tip on the hair product. Mine has been filling back in after my dose reduction, but I'll keep it in mind for the future.
The fatigue. It occurred to me after I told my friend from Florida I was feeling pretty good that I left off the qualifier "for someone with Stage IV cancer". I've gotten so used to feeling generally crummy or worn out that I don't include it in my assessment - even to myself.
The dentist was fine today. He says my teeth are great, but he's worried about my enamel with cancer treatment...I think he's thinking chemo, not targeted therapy.
And, the words "Stage IV breast cancer" were all it took to be excused from jury duty. Well, maybe that and the fact that I was about to fall asleep while waiting for everything to get started.
Booboo - thinking of you
BevJen, ShetlandPony, sandibeach, hopeandgratitude, AlabamaDee - missing you all.
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I have received an email from Moth. She appears to have a very painful rash/sensitive spots on her bum and is looking for recommendations on either medicated creams or alternative meds that can be used to ease that pain. She is currently using EmLA cream, but it's not helping much. Also recommendations for disposable panties. Feel free to contact her via Instagram (itisjustastage) or PM.
Thinking of you Moth...
(Edited by Mods to delete Moth's personal email address. We strongly recommend not posting personal information on a public forum, for own privacy and security. Please exchange contact information using the Private Message feature.)
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I have used Desitin for a rash between the butt cheeks. Worked wonders. Tried antibiotic topical, topicals for fungals - nothing worked except good ole Desitin. Moth - we are there for you🤗🤗🤗🤗🤗🤗
Went to oncologist today and while my scans were confirmed for no progression, my damn labs show I’m neutropenic again (0.9). Another week off Ibrance and dropping down to 75mg. I’m sure that’s why I got cellulitis out of the blue.1 -
Reading along the last few days in between sorting, cleaning, shopping and baking. Getting ready for my daughter and fiance to arrive tomorrow for 12 days. List of items were given to me regarding things they eat etc.- ya right!
Mel- I'm glad you finally found out what the gastric problems are. Take care.
Cathywh59- welcome to Mel's living room. I have been on Ibrance for 3 years and at the beginning my hair thinned out a bit but I have really thick wavy hair so for me it wasn't a bad thing.
Moth - think of you daily. Words cannot describe my hope and my thoughts. Hugs
To everyone with scans and appointments I am with you.
To everyone going through fatigue, nausea and pain I hear you and understand.
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Moth, I’m sorry to hear about your latest issues. It’s been some time since I had major issues - thromboses hemorrhoids as a result of the anti-emetic during my first rounds of CEF chemo - but recall using Witch Hazel pads/wipes to soothe my butt. They were quite effective. On the disposable panties front, Tena makes some good panties for incontinence.
My thoughts are with you and praying for some improvement soon!
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Results on CT were stable. My MO told her resident I was a miracle given all the years of NED and 6 years since brain met treatment. Guess I need to be less lazy, no excuse. I feel both guilty posting but relieved as well.
I am thinking of Moth, Bevjen and all of the other people struggling.
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Goldens- Good you are stable, but sorry for the low counts.
Mara- Woohoo for stable!!!! 6 years, and with brain mets. That is wonderful. I tend to think brain mets and it is all over. But you and Mae show that even with brain mets you can still be "stable".
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Thank you Candy, I feel very lucky too, even after all this time.
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yay! Mara. So glad sweetheart! Big smiles here!
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Mara- way to go girl!
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Thank you Deb! I am happy too I must admit.
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my dss wasn't feeling great last night. Sore throat, just not right. This morning. Even more not right. Took two Covid tests. Both immediately read positive. My DH and I negative. But now he's here and I'm scared I'll get it and Withmy cancer it freaks me out. It's always freaking something. I can't handle Covid after my gastric breakdown. Too much too soon. I don't know what to do. I'm vaccinated, but still. My DH is wiping things down alot. Like last time when my ds got it. Unreal we're still dealing with Covid. Ugh!
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Moth I’m sending hugs. I hope you’re able to get all the recommendations to make you more comfortable.
Mara great results. We have to celebrate good news too.
Mel sorry to hear about DSS covid. My daughter did have it and somehow none of us got it in the house. I hope you’ll be safe.
Take care all
Tany
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Moth I'm thinking of you and am sending you all the positive vibes. Mara, yay for stable, I'm so happy for you. Mel, it seems like it's just one thing after another, I really hope you and dh don't get covid. My friend Patty has arrived for her 2 week stay, so I mightn't be around but in pockets for everyone who needs it.
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Mara, congrats 🎉 and please never feel at all guilty, your a great responder and we want that for you too.
Moth, I have no advice but I’m thinking of you and wish you a big bounce back.
Brain mets severity is so varied and I think depends mostly on finding them early. You can manage them for a good period of time as long as they’re treatable and haven’t caused too much damage.
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I am passing on the news that Shetland Pony passed on July 16. I am utterly heartbroken. Take care of yourselves.
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Nkb— the news about Shetland Pony is a gut punch.
Sorry for your loss
Condolences to her family
She fought valiantly and shared her experiences openly.
She will be missed by many.
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We are deeply sorry to hear about the passing of ShetlandPony. Thank you, nkb, for letting us know. Our sincerest condolences to her family and friends.
The Mods
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Rest in peace, ShetlandPony. She also helped me a lot.
Mara, I’m so happy you’re stable. We need that good news.
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RIP dear ShetlandPony. Mara - what awesome news! May you have many more years with us
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Rest in peace ShetlandPony.
I have been on this site for 4 years and we have lost so many. Too many to name, as I might forget someone. But I can name them under my breath. It is a gut punch. Seems like our group has more than the usual percentage that pass from MBC. Maybe not. Maybe it just seems that way. How can some say that MBC is a chronic condition?! Yes, we have our long-term ones too. "Long term" as 10 years. That is not long term. I am on year 5 now.
I don't want to die yet.
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my heart is broken over Shetland. I hate you cancer. More than anything. My heart is with her family. I was worrying. 😢😢🙌 I can’t believe this is real.
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Mel, I too am sorry about your DSS and the Covid. I honestly think this will be a continuing endemic disease with variants every few months or year and vaccines will resemble flu shots every few months to a year. I have not had my fourth dose but will look into it for next week hopefully.
I am so sorry to hear Shetland Pony is gone, I know she went through a lot and am glad she can be at peace. My thoughts go with her friends here and family as well as friends outside BCO and of course her family.
Mae, thank you for saying not to feel guilty. I will try this going forward. As far as my brain, I still have only had mets in the part of the brain by my ear on the right. Hoping it continues.
Moth, I am always thinking of you, wishing something will turn to make life easier.
As far as I go, pretty lazy day today at home, doing some apps and surveys to make some extra money for groceries, laundry (sqee), made up some liquid oxiclean to use for daily cleaning. Boiled 4 cups of water, 1 small scoop of the oxi powder and will just put in spray bottle. Use both for spraying dishes as I clean them and also to freshen up containers that have stored beans in the fridge briefly as well. I also have to say, I really like the new property managers. They are not talking eviction, committed about getting things fixed, keeping us updated and I will be getting my new lock tomorrow. Hopefully somebody will come to fix the box as the mail cannot deliver here. Most of my mail is electronic so I can wait and I got to say not to bother with the garbage can for me, prefer to put out my bags.
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Maybe I missed some posts recently but I’m both saddened and surprised to hear about Shetland, I had no idea that she was having a particularly difficult time or new progression, just thought she was reading along and doing her own thing checking in occasionally, damn.
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Hello everyone. I'm posting this on moth's recent forums.
Moth announced on Twitter that she posted a detailed update on her Tumblr blog (in her signature). Unlike IG, you don't need an account to read it. Essentially, she's still hoping the treatment will work, but her liver is a big problem.
https://www.tumblr.com/blog/view/nevertellmetheodds2017/690346753584676864?source=share
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Mara - great to hear your STABLE news. We need all the good news we can get to help balance out the stress and sadness.
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Mae - I think she got caught up in progression at the time of the Big BCO Meltdown start of the year. And you know how it goes, you try to get things under control and dealing with a funky website is the last thing you want. I feel like she was about to go into a trial maybe? Which reminds me - I do wonder about AlabamaDee and PatGMc as well.
Mara - well done for having good scans!
Heat finally passed here, but I got my hair cut finally yesterday and even then I spent an hour sweating under the little smock thing. PT today at the H - all my cording is gone so Im very happy about that, just really tight in the pec, probably from too much internet through work and normal use. Thinking we may try to get home for Thanksgiving this year, its been almost 10 years since my last and Id rather go then than deal with Christmas travel. Well see.
Serenity - thank you for the moth tumblr - I didnt realise she had an account there. Much easier to check in.
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