2017 Diagnosed-- A Place To Share "Whats Next"
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Annbee— hope your MO appointment is nothing but good news.
I have pain in rib area on cancer side and was told it was scar tissue and radiation pains.
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EastcoastTS— thanks for well wishes! This BC trip really is quite a journey.
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Dodgergirl that makes me feel better. Did you have to any scans?
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Annbee,I had a PET after mastectomy but nothing after rads.
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Annbee, pain on the ribs can also be associated with lymphedema. If the tissues are swelling or binding, they hurt. I had lymphedema in my arm, armpit, side, ribs and breast. And on BAD days the swelling feels like it's moving into my neck and jaw. It can HURT.
For the longest time after lumpectomy and rads it felt like I was carrying a folded towel under my arm. Everything just felt thick and heavy. Then I laid down on the floor one day and did some random stretches and OHMYGOD! almost peed my pants from pain! I never knew how bound up and seized those muscles and tissues were from the surgery and radiation until I laid on the floor and stretched. But once I got past the pain (which was pretty epic!) and did a few more stretched, I woke the next day with that thick swollen feeling 85% gone! So .. maybe check out the lymphedema threads, do some reading because that tenderness might be fluid in the tissue. You might be able to do something about it with exercise and stretches.
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Annbee, I too have been having rib pain ust under my radiated breast. (Within the Radiation field). I went in and they think it is cording along my rbcage. they took X-rays those looked normal and want me to follow up with pt.
Glad your doctor eased your mind. Hope it feels better soon.
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I’ve been having muscle and bone pain for 8 weeks after chemo. Legs, shoulders, above butt, but mostly right behind right shoulder blsde( which can look swollen) and upper back across shoulders. Almost done rads. RO says pain “fairly common”. I call MO nurse and she says”not the usualthis far out” sigh. See MO March 5 for blood work etc. I think it is just my body having a slow recovery from chemo - fingers crossed!
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since middle of last week I was a nervous wreck because I had colon surgery consul yesterday (250 mile round trip) and 6 mo MO check up today (220 mile round trip the opposite direction). drank too much this past weekend and a few more Ativans, and nervous eating. Fancy GI doc thinks only yearly colonoscopy is recommended. Waiting for DEXA scan and CT result.. but MO thinks I look good. tired physically and mentally
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Castigame—. Sounds like you received great news! I am so happy for you!!!!
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Castigame. That is good news on the colon right? I can't tell if you were being sacastic since you referred to him as the Fancy doctor. It sounds like he had good news for you. Are you worried or uncomfortable with annual colonoscopies?
It's been a long road. Being tired physically and mentally is expected. You had a lot to deal with so be kind to yourself.
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castigame that sounds like good news. Happy for you.
It is not cording or lymphedema per the BS. I have no pain unless I put a finger and press on the spot. I am thinking some kind of inflammation or leftover something from rads. My Bs said I had radiation so there will be no Mets. Just the whole move your appointment up concerned me. I am currently playing phone tag with MO’s office. My fault as I can’t answer the phone while teaching. Bottom line feeling better about it today. You are all the best. Can’t get through this with out you.
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Legomaster, you mentioned having an x-ray for cording. Does that show on an x-ray? I am pretty sure I have cording now (didn't before) and it is not resolving as easily as my lymphedema mostly did. It feels like guitar strings under my skin in my armpit. Hurts like the dickens. Got Hub to put his fingers on it while I moved around and he got all grossed out and looked faint. He is NOT the man to have around in an emergency.
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Runor, the X-rays were to check for fractures or God forbid cancer. They looked normal. Cording does not show on the X-ray.
My cording under (and down) my arm hurt like crazy if I moved or stretched. The pt was terrific.
My new cording and shoulder range of motion issues started after radiation. The Radiation nurse said she could feel the cording by under my breast but it is not a usual spot for it. It is tender to the touch or if I over extend but no where near as bad as before when it was under my arm. My new pt starts Monday but I'm already feeling a bit better after massage and stretchIng got in my own.
Your description does sound like cording. The lymphedemic massage and gentle stretching might help you. If youcan get in to pt it will resolve faster though. It's hard to massage yourself across your shoulders and back the way your supposed to. Your hubby might just need to get involved. It's not like there is blood or open wounds to deal with. Lol. Hope it resolves quickly for you
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Thanks Legomaster. I do stretch and flex and try to keep things from seizing up. I am bad in that I get feeling okay for a while and let the exercises slip - which always turns out to be a mistake. Lifelong management seems to be in my future. Not sure how much Mr. Squeamish Hub will be, but will attempt to get him involved if need be.
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I have 15 Herceptin/Perjeta treatments done. Two more left. Experiencing my typical hip and lower back pain. And for the first time, mouth sores, tongue sores. One tongue sore at the tip of my tongue that keeps on butting into the worst sore on the inside of my lip. I had to call the MO three times to get a prescription but finally got magic mouthwash just yesterday and it was over $100 because of course the insurance wouldn't pay any of it even though the Pharmacist called and tried to get it covered. There is an over the counter ingredient in it. I think Malox. So that's why they won't cover it. Anyway, that stuff is so good. I have achy teeth still and it helped them too. I wish I would have had it during chemo when it felt like all my teeth were going to fall out. You would think it was a controlled substance with what I had to go through to get it.
I saw MO this morning and I'm still really upset about the appointment. After months of obsessing about this, long story short, I am not doing radiation (my decision, against MO's medical advice). MO says that means I will have "inferior" outcome. He wants to schedule another PET scan to check on lymph nodes. So I asked what treatment comes after that, and he said there's no more treatment to offer other than radiation. I thought I was coming to an end of all treatment. I tried to get the okay to get my port removed, and it seems like he doesn't want to give the okay. After all this treatment and time, I feel like I'm back at the confusing beginning.
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Dazzlingeagle— so nice to hear from you. Sorry you are frustrated by your latest MO’s visit though.
I think the last time we “talked” was in Oct when I had just started rads and PT.
I finished rads in Nov and had my last PT on 2/13/18. I still have done cording but ROM is so improved from pre-PT days and will continue exercises and stretching to hopefully continue to break up cording. I feel cording mostly near my elbow and chest. I describe the cording like I have an octopus living in my arm pit with tentacles running down my arm and over my chest. Lots of cording was cleared, just some smaller cords hanging on.
I had a hysterectomy last week, awaiting pathology. March 1st, I see my gynecologist oncologist to talk about what’s next. And will have blood test and sign paperwork to is if I can get accepted into a clinical trial for Everolimus (chemo pill for a year) to try to better my odds against recurrence or metastasis. If I get accepted in this trial, I have a 50/50 chance of getting the chemo pill vs a placebo. Mouth sores are one of the known side effects from Everolimus so I have worked on being able to get the mouth wash and hope, if I need it, I find it works well.
Sorry you are dealing with mouth sores. Hope your magic mouth wash clears them up right away.
When is your last chemo? I know you wrote you have 2 more to go but am not sure how often you have treatments? Every 3 weeks?
Are you scheduled for another PET? I don’t have any scans scheduled at this time. MO said plans at this time are to see MO every 3 months for blood work and as long as I am not having symptoms AND blood work looks good, I will continue seeing MO every 3 months for 2 years, then visits move to every 6 months for 2 years, then annually for 6 years. Oh, and since I am ER/PR +, I am on an aromatase inhibitor for minimum of 5 years.
Right now just taking the aromatase inhibitor and hoping for clear pathol
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Hi Dazzlingeagle,yeah to almost being done. I am surprised no radiation with the positive lymph nodes and lumpectomy. I am not really good with protocols though. It is hard to end treatment. I feel like I am left out on my own. I am on the same schedule for appointments as dodgergirl, though I may end up with a scan after see my MO for rib pain which I am convinced is nothing but better to sure.0
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Annbee— did you connect with your MO and set an appointment? I know you will feel better knowing that rib pain is ok.
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Dazzlingeagle— search this site for Nerlynx.. it’s a new chemical pill that the FDA approved last summer for HER2 positive BC patients. It my gut be worth a conversation with your MO to give you a option should you want another treatment after you finish your current chemo.
Sorry I can’t add the link here fir you but adding a link doesn’t always work for me from my phone.
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Hi Dodgers girl. Back in Oct or Nov the MO talked about it, that he wanted me to start Nerlynx when I was done with Herceptin and I was excited there was another treatment option and agreed to try it. so I have been thinking all this time that's what was going to happen and when I asked about it today he said he didn't know now. I go back in six weeks so I don't know if I'll find out before then. I just want the rest of this to be scheduled (port removal, Nerlynx, then I'm getting some reconstruction) so I know what's happening and I hate not knowing and I wish I would have found a different doctor but I'm just trying to get through these next couple months.
Are you up and about like normal after your surgery or still recovering? How does menopause work once you've had a hysterectomy? I ended up having one ovary and both tubes out but not uterus and went majorly into menopause hot flashes and the gyno-onco doc gave me 35.5 mgs of Effexor which has worked great. I usually still get one bad hot flash in the early morning but that's it so I can mostly sleep through the night now.
Annbee, I am interested to know what they say about your rib pain.
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Dazzlingeagle— I am still recovering. Kind of sore on right side but no pain where the 4 incisions are. I had a robot assisted laparoscopic hysterectomy. So far haven’t noticed any menopause symptoms but I had a Zoladex shot last month to shut down my ovaries so maybe there wasn’t much difference between and having and not having ovaries???
Please keep us posted on your tx plans. Keeping you in my thoughts
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Hello everyone, Buttercup here. Hope you are all having a good day and getting through things.
Who here has had their treatment change before it was completed? I had a reaction to Taxotere at my second infusion and will be switching to Adriamyacin for my 3rd infusion (with Cytoxan).
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hi ladies I was absent for a while
I had surgery scheduled February 16 TE right side
On Tuesday I had pain redness on left side
So my surgeon sent me to the hospital I stayed 1 week 😭😭😭😭😭😭😭😭😭😭😭
I had bilateral surgery it was my decision and sometimes I regret
I don't want to have more surgeries but now I have TE on left side st my right side is flat
I don't know I'm tired after 7 surgeries I'm done
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I don't know if I qualify for this group as I was diagnosed on 12/26/17, had my surgery on 2/6/18, got my Oncotype dx score (53) on 2/21/18 (am still reeling from that news) and will start chemo (dd AC*4+T*4) in 3-4 weeks. Can I hang out here?
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ordinarybeauty— sure, you are welcome here. Ask questions, as you have them. There are lots of super women here who have been thru many different treatments and would we more than willing to offer suggestions and give support. So sorry you find yourself having to fight BC but glad you found BCO and our group.
Have you read thru any of the older chemo threads to get an idea what the Dose dense AC and Taxol will be like? Do you have a port? We are all in your pocket ( for support) as you get thru chemo.
It’s important to drink lots of water during chemo, especially around the infusion day and the next day.
You can do this ,,, one day at a time.
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gigilala— omg, so sorry you landed in the hospital for a week. I hope things are better now? What is the game plan?
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PrincessButtercup- my treatments didn’t change so I don’t have any answer to your post but hope someone here can answer for you.
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Welcome, Ordinary, to our group! Agree with DodgersG, ask any and all questions. We'll try to help. Unfortunately, we all get it.
gigilala--So sorry. I had a post-op infection and it was honestly the worst I felt over the long haul of this entire journey. {hugs}
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Thank u ladies
My surgeon told me before my first surgery that I gonna have bilateral mastectomy than TE than exchange
But it' s not what happened to me 😭😭😭😭😭😭😭😭
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Gigilala, where are you at with herceptin? I have two more left and so excited to finish but worried too. Worried I'm going to be done with it and worried if I should be staying on it. I've been getting Perjeta with the Herceptin. Have you been having watering eyes and runny nose? Such a nagging SE. Seven surgeries is a lot. What are your next steps?
I have had a bad few days here but starting to come out of it.
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