Calling all TNs
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Hello Teka,
I just decided to have a quick look at the bc.org forum to see if anything had changed and I was pleasantly surprised to see your name and your message.
I was glad to know that you are doing well.
I continue to survive and have now reached 19 years since diagnosis.
The forum is nothing like it used to be and I have given up on the thread I started and which was so active for so long. Everything went wrong when all the new format was brought in. I did look at the UK thread but there is very little going on.
Everything on the forum looks so formal and sterile. I do remember what interesting people came on the thread from different parts of thw world. We sent in photographs of ourselves, our family, gardens, art and so on. It was all so colourful and we found happiness and companionship while going through our long and serious cancer treatment.
Continue to do well.
Love and best wishes.
Sylvia xxxxx
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Morning Ladies, it was such a pretty weather weekend, this is my scan week, this Friday and then chemo starts Monday ughhh
@rlschaller Hey girl, yep the MO said the carbo is hard on the hearing and you can actually have major hearing loss with it or ringing in the ears
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Good morning ladies. I'm waiting my 1 hour before pet scan. Not expecting any interruptions. Yay.
Before the mri yesterday I told my dd the news. I'll be telling her in bits but she is pretty smart telling me it could mutate or be a new primary. she took it well. DH is the one that can't handle it. Mri showed a 2.6 cm tumor. Concerned that size might have spread by now and no lymph nodes to catch it. Glad for the pet.
I thought I'd write a letter to Dr on my chart and state "for the record" never said I wouldn't take chemo or never refused it. I don't want hard feelings with the guy but it really irks me. Any suggestions.
Already he is not happy with me cause I stopped xgeva. This new cancer has me more concerned. I thought I might start it again. It would be nice if there were some convincing statistics.
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@sylviaexmouthuk that is awesome news, 19 years cancer free. Thank you for popping back in and sharing. Wishing you continued joy and good health.
@pinkone501 so interesting about the hearing.. it’s always something isn’t it? Lol..one day one treatment at a time! Hope the scan went ok, and in your pocket for Mondays chemo. 🤗
@gailmary I would talk to him calmly and clearly, share your concerns about notes on your chart. Tell him that you want to clear up what is looking like a misunderstanding, and that this is important for you and for him to be on the same page. Be honest with him about how you feel, so you are not walking around with this irksome conversation playing over and over in your mind. At least you can try. Hope that helps.. hope the PET went well. 🤞
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RHONDA, thank you. I've calmed down a bit now. I saw MO the other day but didn't say anything. He showed me the app he uses to determine what to prescribe. Input my info and results were pretty much the same that you were on. I hear details today at chemo class with his PA. I've seen her regularly for 7 years.
SYLVIA excellent news. 19 yrs gives me renewed hope.
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Morning Ladies, scans were all clear, went for chemo yesterday and they poked and poked and poked did I say poked and never got a vein, so next Monday I get a port put in, never had one kind nervous about it, then start chemo the 30th
Also something interesting my MO said, she said I was very borderline whether I needed chemo or not, even tho triple negative, she said because the tumor was so small, if they could have tested it to see how it was going to act she might have decided to skip the chemo, but I am going forward I do not need any regrets later
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Pink one. My dr also said if it's tiny I could skip it. But 2.6cm isn't so tiny.
I skipped it with first cancer.
It wasn't so tiny but highly er/pr+and 2 micro mets. Low oncoscire. If wouldn't have really helped.
Going for my port tomorrow. Yikes
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gals - I love my port. Just saying… it’s an easy procedure really and it will make the infusions a breeze as a process. Just remember to ask for a prescription for the lidocaine numbing cream. You put that on the port surface an hour or two before infusions, and you don’t feel a thing, it’s great. I needed some Tylenol after the procedure for a day or so. It was the best thing I did. And Chemo is what chemo is. Some of it easier to take than others. I tell myself it’s my magic juice and embrace it - no regrets agreed. Ive always kept a journal where I track my SE so I can work better with the days I’m a little off, and the days I feel great. This way I know when they are coming, which is a nice way to manage it all. I also write affirmations each day.. my current ones are Never ever give up and Dare to recover ❤️
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I second what Rhonda said about the port! If there's one thing you can do to make the chemo process easier, that's it! And the numbing cream of course. Get Press & Seal. You'll need a layer between the cream and your clothes!
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Pinkone, got my port today. Dr reassured me it's easy and low risk. No pain yet. If I have no reaction I'll be glad.
RHONDA, thank you for the Magic juice or maybe potion. I think renaming it that will help lots. Been calling it poison.
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Morning Ladies, so port coming on Monday , really nervous about it, how long does it take
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@pinkone501 Don't be nervous about it. Mine was done in the outpatient surgery dept in the hospital. It's a busy place so it took a few hours. Make sure you have someone to drive you home. The IV was worse than the surgery in my opinion. But the IV is necessary so just bear with it it'll be the last time for a while that you need one hopefully. They'll do a small incision to insert the port. The surgeon used glue on my incision. I was a little bruised and sore for a few days, then it took a week or so for everything to completely heal. I never took the pain medicine I was prescribed! It was not that big of a deal. I'm thankful I have the port.
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@justsnapd8 i agree, mine was similar. The hard part was the IV. Outpatient procedure DH drove me home. I was sore for a few days and had my first infusion later that week. I’ve been thinking about you, have you started the A/C yet ? I hope all is well.
@pinkone501 it’ll be fine , plan for a few hours since you are under a low general anesthesia . Procedure itself is not long. You’ll be so happy with the port.
@gailmary i think you will love the magic potion image. It’s empowering. You feel like you are doing something good for yourself , and resentment is not healing. Doesn’t mean you like it, but it is a choice to heal, and dare to recover.
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@rlschaller I got my 1st dose of AC on Tuesday. No bad SE's yet, just extreme fatigue, which I can handle. Thanks for asking! How are you?
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I had my first AC infusion without a port because there was no time to get the port in. The tumor board agreed that it was best to get me started on chemo right away, so we could not wait to get the port before the first infusion. That first infusion without a port was very intense. I had two very good nurses inject the AC through a vein on my left wrist. The infusion went smoothly, but the next day, I woke up to intense swelling on my left arm. Luckily, the swelling subsided after a day. Before my second AC infusion, I had my port implanted. It was an easy procedure and recovery was smooth. The infusions with a port was so much less stressful. I am so glad I got the port. I kept my port in for 3.5 years due to my high risk of recurrence.
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@norcals omg that sounds intense, thank goodness it all worked out.
@justsnapd8 im well. I will be starting radiation to deal with the spread to my skin, which is great news cause it got a little worse. I found out today that radiation was approved. Probably start in 3 weeks or so. Radiation is a good treatment for skin Mets so fingers crossed it works. Otherwise the tumor has almost disappeared so Trodelvy is working well under the skin lol…. It’s a journey.2 -
@gailmary yes it will be 5 days a week for three weeks for whole breast , arm pit and lymph nodes on the right breast, and then 5 days of a boost just to the breast. So 20 treatments all together. I was supposed to go for radiation with my first diagnosis, and this was the same plan, I have the small tattoos in place already. But we didn’t do it cause of the recurrence discovered the day before I was to start. I’m hoping this both takes care of the skin Mets and seals the deal on the tumor…so to speak lol. Sounds weird, but I’m looking forward to it. Both my surgeon and MO think this is the right treatment now, I’ll keep you all posted. Glad you got your port in.
Good luck to you on starting your chemo !
and @pinkone501 getting your port on Monday. In your pockets for support !
Beautiful day today - went for a long walk with DH and settling in now with a book. My favorite type of Saturday afternoon.0 -
My radiation treatments in 2009 came after surgery and I didn't get chemo. Just hormonal therapy after radiation. I had the "Canadian method" a short schedule of 15 treatments + boost. I can't get it this time. It didn't bother me at all when I got it.
I'm confused Rhonda. Are the skin mets in the original breast and didn't you have radiation prior to this.
OoOops. Sorry. I reread your post. Yes, keep us informef
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Morning Gail, Yes the skin Mets are on /in the original breast, which is also the breast with the recurrence . I did not have radiation the first time, the recurrence happened before I was scheduled to start. The first time, they recommended Xeloda and Keytruda after surgery and radiation was to follow that, but I had a recurrence after one month finishing the Xeloda and the treatment plan changed. And just like you, I checked my notes I will have 15 treatments (not 20) and a boost . The radiation oncologist said I’ve had a an amazing response so far, and now we add this for the skin. So glad to read that it didn’t bother you at all when you got radiation. 😘
Happy Sunday to all. Hope you have a great day.
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PINKONE, how did it go with getting the port? When do treatments start for you? Mine has been in 5 days now and still a bit tender when I reach across my chest. Hoping that goes away. Get to use it in the morning.
So first infusion tomorrow. Busy trying to be caught up with housework and such. Thinking about what I need to bring for 4 hours to be comfortable. I find their chairs uncomfortable but they have nice heaters.
RHONDA I liked the idea of tracking side effects. Any tips?. Did you abbreviate on a calendar, use a notebook. Regular diary format. Did you record mood and feelings too. i hope that becomes a habit for me. I do like to write though you wouldnt know it from my posts. The other habit I will need to develop is rinsing the mouth after food. Oh joy. Dont think I'll like this new hobby.
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Morning Ladies, port placement went ok, so sore this morning tho, I start chemo next Monday the 30th, hope you all are doing ok as well, this journey does suck tho
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@pinkone501 You will be sore, but it shouldn't be too bad. I didn't even have to take a pain pill. I hope chemo goes well for you. It's natural to be anxious, but know that the pre-meds they give you will offset SE's for a couple of days. They'll give you Benedryl, so if you struggle with Restless Leg Syndrome, ask them to run it slow. 40 min works well for me. My first chemo nurse asked, but no guarantee yours will. Wanting to take a nap because of the Benedryl, and not being able to because of the RLS is miserable! Let us know how it goes please.
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@justsnapd8 how interesting about RLS and Benadryl, had no idea. No one ever asked me that. Benadryl makes me so sleepy, I usually do take a nap. There is always a nuance in this treatment. We learn to face so much and adjust. My mother used to say accept and relax was the best way forward. I love remembering that advice. Hope the A/C is not too bad, and SE manageable. It’s intense sometimes, and we are here for you.
@pinkone501 - I found taking Tylenol really helpful for the port soreness. Then just putting on lidocaine cream before each infusion numbs it, and it is smooth sailing. Make sure your MO prescribes the lidocaine before you start your chemo. It is what it is, might as well make it as easy as you can. Keep us posted !
Gail - i hope the chemo went well or will go well, couldn’t tell if you were starting today or tomorrow . I love writing too. You will love it. I use a notebook and tracking for me is fun and I track everything lol…it has been awesome and super helpful. I use an old fashioned composition notebook, with lines. Every day : I write down my exercise routine so I remember if I did stretching or cardio that day, and how long I did it 20 minutes a day is my goal and I use YouTube videos. I write down what I drink, teas, water, juice how much of each - with a goal of 8 glasses a day, so I can keep track of my hydration otherwise I forget to drink enough. I track my SE , write down what I felt if anything, for example a little fatigue, or if I didn’t go to the bathroom as normal, etc… most days I write none. But for instance I get a rash from the trodelvy like clockwork on day 16 of the cycle and I know this because I track it. This helps in my planning that day. I also write how I’m feeling emotionally or spiritually or physically, keeping a journal daily is so good for my mental health and keeps me positive day in and day out. And when I feel sad, I write that too. When I look back through it I can see how my SE come and go, and it’s interesting to also see how my moods and thoughts rise and fall and it’s really nice. I also draw in it sometimes, flowers mostly lol.. i. I also write down positive affirmations every day . That is my favorite part. Hunting the good stuff is a place of practice.
For rinsing I used to keep a glass of water with a little salt in it by the sink so I could rinse 3 times a day. But that was only when I was on the Xeloda. I don’t miss that…1 -
@rlschaller I'm a week out from the 1st AC infusion. SE hasn't been too bad so far. We keep popsicles here when I need a hydration boost, and puffy cheetos when I need something light. Peanut butter on a slice of bread works well too and doesn't trigger my reflux. Mainly it's the exhaustion. I tried to go for a walk yesterday, but only made it maybe 10 ft! I went back to the golf cart lol. Next week will be better, no doubt.
RLS runs in my family; I remember my dad being up all hours with it. I grew to love my Benedryl naps! But if they ran it too fast, it would trigger the RLS.
Hope y'all are all doing well! 🤗
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Great tip to run the benadryl slow. I do get RLS. I only get 1 more dose of it for preventing SE from Taxol. Then the body should recognize it.
A 10 ft walk. Oh dear. That's not even to the kitchen! This benadryl should wear off then maybe not too tired for an afternoon walk down driveway to bridge over creek. 400 ft.
I kept a diary as a teen. I enjoyed it. I'd probably write most when dh is in bed and I can't sleep. Maybe that will change now. Maybe I'd sleep better with those thoughts down on paper instead of continually running through my head.
So yes cycle 1 day 1 today. Everything went well with the exception of RLS for a couple hours. Seemed to calm with hot blanket.
Good day/night to everyone.
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@gailmary Oh Gail, I'm sorry I didn't mention it sooner. RLS is annoying! Especially when all you really want is a good Benedryl nap! A 40 min drip made all the difference for me. They don't want you slowing them down, but you're the patient and deserve to be kept comfortable. My walk was probably more than 10 ft, but it was getting hot already. I'm in SE Louisiana! I think the heat beat me more than the steps did. 😛
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Morning Ladies, taking my bandage off today from my port surgery, hope everyone is doing ok, I am working in the office but I know soon I will be working from home once I start the chemo, hoping to be in the office some at least
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@pinkone501 I'm retired but can appreciate that you'll be allowed to work from home in the coming months. You will be able to go to the office some days, probably right before your next infusion. You can't plan it out based on how you think you'll feel, so you'll just have to wing it. Did you get stitches for your incision? Mine was glued, and I didn't have a bandage. A bandage would have kept me from messing with it, lol. I'm lucky it didn't get infected. 😚
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@justsnapd8 They told me it was glued, it is starting to itch so I am ready for the bandage to be off
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