Calling all TNs
Comments
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been at work all week with my beautiful mother! Now you guys can put a face to the case! I am on the left and my mom is on the right! Isn't her new hair cute?! She wanted it cut so it wasn't such a shock after chemo started!
I hope all you ladies are having a wonderful day! And keep fighting the battle!
Meadow and Cocker_Spaniel I want to bombard on this lovely day!
You ladies are amazing! Prayers to you all and keep my mom in mind as we find out her PET scan results tomorrow!
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TerrifiedDaughter: Beautiful photo of you and your mom! We're all here for both of you–whatever you need. I don't tend to post much, but I'm always here (mostly lurking) and holding everyone close in my thoughts.
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Thank you all so much for the compliments! I was so afraid to ditch the wigs, but you all gave me confidence! Muhwaah!
TD, you and your mom are beautiful! I have a couple of chemo hints. Fill a water bottle with water and a tsp of baking soda and a tsp of salt, each day. Leave it in the bathroom, and tell mom to rinse each time she's in the bathroom. (Which will be often because she has to drink 70-100oz of fluids/day!) it helps immensely with mouth irritation. Stock up on Brachs's Lemon Drops to get rid of crummy mouth taste. Use satin pollowcases when hair starts to fall out, as her scalp may be tingly/itchy. I buzzed mine to a half inch 2 weeks after first infusion. Dove liquid soap and a good scub in the shower before bed lessened the scalp itchies. I have posted other hints on the april chemo thread, I think? I will look for them and try to post here. I know some may call me crazy, but chemo wasn't too bad once I learned from so many women before me. Oh yes-- Biotene toothpaste and mouthwash were lifesavers, as well. And Colace ! And 30 minutes of exercise a day, even just a walk, helps clear those txs out, after they've done their job
We are all here for you!
Hugs
Arlene
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Heading to the PS for post op from my exchange. No wig. ....0 -
Looking Great, msmath! Hope u lose the drains
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Msmath you look beautiful!!!
Greenae thank you for all the wonderful tips!! I am making a list for my mom
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Msmath
That's awesome. You look great!!! Hair is coming back nicely for you as well.
Terrified covering you in prayer for mom's PET results. Everything is going to be ok. Her team of Dr's will help equip you both to kick this thing to the curb.
For her weeks through chemo: ask about her taking supplements. Many Dr's are on the fence about it. Mine allowed me to take Chlorella & Spirulina (green super foods) in a smoothy. (Not sure if the supplements were allowed because I was post partium from giving birth or if she ok'd all her bc patients, may need to get the groups thoughts on this one) Skin may get super dry so an organic lotion will help. I think it sounds like everyone has covered the bases.
Hugs to all.
G
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Drains are gone!! My PS is leaving it up to me about returning to work. She would like me to go back part time for a week or two simply because I haven't worked since January and I will be around a lot of students and germs. Suddenly I'm so nervous about going back to work. I'm afraid I will have chemo brain while trying to teach or that I won't have enough energy.
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Yay for drainage done! I went back to work for 1 week after chemo in June, and was exhausted each afternoon. (PK RN, do a lot of teaching of adults and kids). Had surgery in July and back in sept. You just had surgery! I say Take Your Time! Rest up and get your immune system and strength back.
Hugs
Arlene
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Msmath you look gorgeous! As far as the chemo brain....you prob will have moments of the...what we used to call "Brain Farts" before chemo, now chemo brain. I had one today while on the phone with my wireless internet provider. I was trying to update our autopay account but I couldn't describe what I wanted her to do...we both started laughing and we got it done. So hopefully the students and you can find a way to get it done too. Don't stress out! It's all good.
TDaughter, yes, C'mon, let's head south and all pile in on Cocker...who is coming with us! lol LOVE the pic of you and your mama!
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hi everyone, it feels like this forum has been very active recently. Whilst I am sorry that everyone needs to be here, I'm glad that we can be here for each other. I've tried posting a few times since my last post but each single letter I've typed has been so slow updating to the page. So much so that I've given up in frustration several times. Does anyone else have that problem? Maybe it's a dodgy internet connection my end. Anyway, it's much better today so I'm going to go for it.
Thanks to everyone that chimed in regarding Gene testing. Alldp, alhusband, cocker. I had Hodgkin's disease at aged 19, breast cancer at 39, and since diagnosis, I've tested positive for the BRCA2 faulty gene. I'm going to ask for the p53 protein test when I see my onc next. Knowledge is power.
I am in the chair today with only 3 weekly taxols left. I completed AC prior to this. I had carboplatin for the first 6 infusions but it knocked my blood around too much so we dropped that one. I'm booked in for my surgery on Friday the 13th (really!!) of November and I'm having a BMX, reconstruction and ovary and Fallopian tube removal. I am unable to have radiation as I had this back when I was 19.
Aggiemegs - I hope your bone pain has settled down. I have 7 year old twins and I love being silly with them. I hate that cancer takes that from me some days.
CarolinaAmy - glad to hear that you've had some better news regarding your sister.
Kath - I'm so so sorry to hear that you are battling cancer again. It's not fair, but then cancer is the dictionary definition of not fair. I suppose it's a silver lining that it's not TN recurrence as uterine cancer is more treatable? I hope that's the case.
Allydp - congrats on the clear MRI. I know I'm a bit late with the congrats.
Cocker - I hope your old man is feeling better and his situation has improved. I'm just over the pond on Sydney. Funny isn't it how far reaching this forum is. At any one time, there is probably one of us awake somewhere in the world.
I am not one to pray in the traditional sense but I will continue to send you all my love and keep you all in my thoughts x
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Here I am in my chair. If I work out how to update my profile pic, I will do so.
On a separate note, some time ago someone asked about breast pain. I had breast pain for a week or so on AC and also for several weeks on Carbo/ taxol. In both occasions, the progress ultrasounds found shrinkage. So much so that my main tumour was undetectable on the last screening. I guess sometime pain can be a good thing.
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Darn phone just ate my reply!!! Argh!
cassylou and msmath, you make bald freaking gorgeous!
TDaughter (I won't use the full name anymore because I don't want to speak that over you! 💚), you and your mom are adorable. She rocks the haircut!! And she's so smart to be proactive.
As far as chemo tips go, I'd be happy to email you the documents I just sent my sister. It got really long, but she said she was so happy not to have to do the research and reinvent the wheel. Feel free to PM me with your email address and I'll send along all my notes.
Don't be frightened by the "worst case scenario" info they have to include. The reality isn't like that for all of us. Chemo is tough, but you really can continue with life. Just with naps and stuff. 😄 I have a sense that your mom is going to do very, very well. She raised one heck of a daughter, after all.0 -
Last month I was part of a video rebutting the absurd recommendations to move mammograms up to age 50 and then only every other year. The other women were all past treatment, and when the crew realized I was going in for my port the following day and starting chemo the day after, they got really quiet. It was my hair's last hurrah. 😄 (I'm the goofball who says, "It's my boob!"--which was a TOTAL JOKE about whether anyone was going to say something like that. So naturally they included it. SMH.)
Please feel free to share this video and encourage people to sign the petition linked at the end to tell Congress to toss this dangerous new recommendation.
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TD Great pics. You both look lovely. Some very wise tips coming out here. Another one is if you suffer with constipation. I did and I had never had it before and it really was a pain in the a...... My Onco gave me coloxyl with senna but it gave me bad tummy pains so we ditched the senna. I took the two little pills two days before each chemo and then every day until I started to feel better. My hair started falling out on my second chemo so we had a shave the head party and it was really fun. I didn't actually look as bad as I thought I would but it was cold for me as we were in winter so I wore a hat or a pretty scarf. I had a hat for each outfit. I brought a wig but hated it. Felt like it was going to blow off in the wind.
Msmath another gorgeous lady. So glad you now have the drains out. I think that was one of the most horrible things. They put my two bottles in a bag and I carried them around but I kept forgetting they were there until I walked off without them.
Meadow yep you can all come to NZ. All will be very welcome. What a laugh we would have and then we could all bowl over to see Cassielou in Sydney and she can make jokes about the kiwi's lol.
Cassylou I genuinely think you have one of the most beautiful and fascinating faces I have ever seen. I can tell you have a sense of humour and are a very kind person. I would say you think a lot and weigh people up. I could look at your face for ages or maybe its because you have a smile like my late sister had. Don't mind me though I always analise photo's of faces.
Well ladies, I went with the old feller for his check up today. His heart is now back to its normal rhythm, his BP is excellent and his pulse is fine but I happened to cough while I was there, bad move. Before I knew it the doctor had taken my temperature, checked my chest, written a script for bloody AB's and gave me a form for a chest x-ray. I did try to say I only came with him but it didn't work.
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by northern Michigan, do you mean the U.P. ? If so, I love that place. My husband and I had a wonderful camping trip there and our 30 year old daughter was conceived during that trip. Best wishes for a wonderful anniversary trip.
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Ladies, it is the dread month of pink. Wish it didn't need to exist! Here is to all of us:
You are all always in my prayers!
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Casylou- omg me too! The typing DRIVES ME NUTS! And I'm sorry to hear you already went through a lot of this, but you will be fine! Even if it is on Friday the 13th
and what a beautiful picture!! CarolinaAmy- you are just too sweet and HOW ADORABLE was your "that's my boob." The video was eye opening! Thank you for sharing! And I will for sure send you a message!
Cocker_Spaniel- thank you! We haven't taken and updated picture in a while, I also had 5 1/2 inches cut off a few months ago! Short hair is in ladies 😊😊 and I have been searching for hats and what not! I am glad to hear your spouse is doing well! And the doc was looking out for you as well!
Today is a big day ladies, we are on our way to a few appointments this morning and hoping to see the PET scan results! Been praying for a good image and hopeful news!
Keep us in your thoughts and I will be back with updates!
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CarolinaAmy, I love love love "thats my boob!" it definitely made me laugh out loud. Amazing video that everyone should see!
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cassylou
Yes I too had Hodgekins when I was in my earyl 30's. I have read and my Dr has confirmed that if you have had Hodgekins your chances of getting BC are very very high. I had a right mastectomy 15 years ago and a left mastectomy 4 1/2 years ago and now I have BC metastasis to my lung and the lymph nodes in the center of my chest. Of course this is the area that I had radiation for 6 weeks back then.
I hope all goes well with your treatment and you have few se's I am off for my first chemo of Gezmar and Carboplatin.
God Bless
Rosieo
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So finally making some progress in my post-chemo plan. Met with the MO and surgeon yesterday. Both seem content/happy with the progress so far. Getting an MRI for my lymph nodes hopefully soon. If they still see some wonky looking nodes, then they're going to remove more nodes during my lumpectomy. If the nodes look good, then they'll just zap them with radiation instead of remove more and increase my risk of lymphedema. AND my port will come out too. WOOT!! That might have been the best news. Plus November will be my last zoladex shot and then hopefully my ovaries will wake up soon after and this faux menopause will go away. The end of radiation still seems so far away but baby steps. I'm getting there!
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So, I'm finally starting to feel a little normal again, but I'm finding that as I feel normal, I'm starting to give myself panic attacks about the fact that I have to do this 7 more times (maybe more, pending BRCA results)! I can't stop thinking about it, and it's making it practically impossible for me to enjoy this current "normal" because I'm so obsessed with knowing how crappy I will feel by this time next week. Ugh! Please tell me I'm not the only one who has this level of anxiety!
And in other news....I got my wig this week! Good thing, since my hair started abandoning ship this morning, so I'm sure I'll be buzzing it next week. But check it out! Left is after my last cut/color, right is the wig! I'm super impressed!
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Aggiemegs!! I wouldn't have known the difference, truly! That is one HECK of a wig!
TDaughter, you and your mom seriously are the cutest things. She's gonna rock this.
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aggiemegs, woah, the wig is amazing! is it real hair or synthetic? I bought a synthetic one and it def does NOT look as good. I think the women at work can tell it's not my real hair but the men seem oblivious
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And cassylove, I still can't get over how truly beautiful you are. Cocker's description was utterly spot on. My goodness!
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CarolinaAmy: WONDERFUL, moving video. Thank you for sharing.
Aggiemegs: the wig is great!
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thanks Cocker.....................:) I find out my results tomorrow
I hope that your hubby is doing better today. We deal with heart issues here in our family
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Hi All,
CarolinaAmy, what a fantastic project for you to be a part of. The Canadian govt (where I am from) has also started discussing the possibility of reducing screening mammography here and moving forward with the possibility of starting at age 50, instead of 40. They say it is too costly to screen this age range and they do not feel the number of women they find with breast cancer ages 40-50 justifies this cost.
Here I am, 43 yrs old, no family history with triple negative breast cancer. I can't fathom my life "not being worth the cost".
I think it is wrong for politicians to devalue life by talking about it in terms of dollars and cents. Sorry for my rant but I have met such lovely ladies on this discussion board. You guys have helped me through some of the darkest times of my life and I think we are all "worth it" whether we are 40, 50, whatever age.
Ps I love all the pics. I can finally put faces to the names. You are all so beautiful!
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THAT right there...in my opinion...is what's wrong with socialized medicine. Regardless of your politics or whether you're from Canada or the USA or anywhere else it exists...human lives come down to dollars and cents on a chart in some bureaucrat's office. It's ridiculous. Therein lies the last political comment I will make. Just my opinion.
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Aggiemeds the wig looks great!
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