Stage 2 Sisters Club
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Do what the doctors recommend, hang tough through treatment; there's a wonderful life on the other side!
Here's what I just got back from doing with the ladies of my family (everyone lives far apart, so we do a Girls Trip every summer).
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Lovely photo, RuthBru.
Today I am having a EMG and nerve conduction study on my right arm. I have been complaining on and off about my shoulder for about a year. The surgeon said take care of it with your GP. By March, it hurt like an SOB! Eventually, the GP did and xray and scan and they found a torn rotator cuff. I went to an orthopedic surgeon who was a big dork.
The GP sent me to PT and they said, "Hey! There's some minor CORDING in there! No wonder you hurt like an SOB and lost your range of motion!" (Haha, they didn't quite put it that way.)
So, basically, it took a PT to look under my arm to figure out it was related to not having any lymph nodes and cancer.
PT was somewhat helpful. However, now I have referred pain from the shoulder and I cannot feel my right hand. The Dork Doctor transferred me to a Pain Specialist, who turned out to be a fantastic doctor!
So, we will see where my nerve is stuck. I think it will be next to the cording.
Please Note: Cording can come up well after surgery.
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Mexicoheather - I hope you do not need surgery for the torn rotator cuff. Or is it not torn, just cording? Either way, hope the PT puts everything right. I just wanted to add that I wear KT tape on my arm to help with lymphedema. I few weeks ago, I stopped wearing it and thought everything was fine until I felt cording when I stretched my arm. So I am back to wearing the tape all the time. I wear tape or a compression sleeve and glove, but I love the KT tape.
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I have taped it before and it helped. The test results were not definitive enough, so I am now turning my gaze to Arimidex -- numb and tingling hand is a known side effect. I have a call out to the Oncologist, as orthopedic doctor would have me do nothing for 3 to 6 months. Ugh.
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Ruthbru: Pretty scary stuff! I'm scared even looking at the photo. What a great thing to do.
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We had a GREAT guide who made it really, really fun.
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MexicoHeather, I don't know if this helps....
After lumpectomy I worked hard at getting full range of motion back. There was some serious pain involved in this as I discovered that all sorts of things had bound up and seized over my ribs and up into my shoulder. But I did stretches on the floor and things were improving vastly.
Then one day I had terrible pain in my shoulder and could all of a sudden no longer get my arm over my head! The pain was in the joint and I thought, oh brother, is this arthritis? I have done nothing wild and crazy to cause a sudden injury, no reason for motion that was there one day to be gone the next! It made no sense.
It took WEEKS of laying on the floor every night and easing my arm, through the pain, into positions that I had a hard time getting in to. Sometimes I had Husband pull on my arm, or press on it, or whatever I needed. It took a lot of time but the problem resolved and full motion came back.
The moral of the story is that I suspected cording as the problem. I have had it flare up in different places, like guitar strings under my skin, so gross! If this IS cording that you are having, PT should help resolve it. It won't be quick. But it's not hopeless. I think maybe your cording is a bigger problem than anyone seems to be realizing. If it is that, you can work through it, and that is good news!
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we had another night filled with thunder and lightning. So the dogs and I finally fell asleep about 4 a.m. this morning. I was awake at 6. My radiation appointment. I dressed in the dark because I didn't want to wake up the dogs. When I arrived the radiation department one of the girls looked at me and started laughing. She said" your shoes don't match. I had on one Skechers sandal and 1 gardening flip flop. I just laughed and went to my car and put on my sneakers. I always keep sneakers in my car because when I finish radiation I have to go to work. It's easier to wear sandals and yoga pants for radiation. Lesson here do not dress in the dark.
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other than bone pain, did anyone have pelvic possibly ovarian pains after taxol? I have had pelvic type pain all day today. It's 3days past my first taxol treatment. Don't remember being warned about it. Just curious.
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my Mo did tell me pelvic pain was a possible side effect from Taxotere. I would still check with my doctor to be on the safe side. I never experienced bone pain and only occasional muscle pain. Taxotere really affected my close vision. Even though it's been 8 weeks post chemo my close vision is slowly returning to normal. I did have several sores on my hands and forearms. They would disappear after 2 or 3 days and then within a week three or four sores would pop up again. No itching or pain associated with them. They were ugly though.
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cccmc2, I have the pain you describe. It might be that it’s only happening on DD Taxol schedule. Today is my day 5 after the first dose, and it’s receding slowly. I felt like my period is going to start any moment now, or am on day 2 of my period. I am in a lot of pain from this drug. Had to call the doctor yesterday. She prescribed Tramadol, which helped. Had an acupuncture too, waiting to see the results. I felt much better on AC.
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Yay! I was accepted on a retreat team for Little Pink Houses of Hope. The retreat is in Orange Beach, Alabama, and is for an entire week.
It feels good to be one year out of treatment and doing this for other families facing breast cancer issues.
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thank you ladies. The severe pelvic pain hit me day 3 and 4 and subsided day 5. I was also called In tramadol which did help, my onc also suggested taking a dose of my dexamethasone which I did. So I don’t Know which helped more but I’ll be taking them both for next round. Other than those 2 days i have really not had any other adverse side effects. It makes sense that the DD taxol would have harder side effects. My onc did confirm it is common. So far I have much better energy than when on AC, and i havent needed any zofran. Not one!
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MexicoHeather. That is pretty cool. Orange Beach is beautiful. When do you go? Where did you hear about this?
I’m one year out from diagnosis and one days I feel like it was just yesterday and I get scared and freak out. Then I remember that I’m doing okay. I hate this disease.
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TaRenee: You are so right. There are so many cascading changes to my body that I can't keep up some days. No estrogen, ugh.
Little Pink Houses of Hope came up because I was looking for a compression sleeve so I could go on an airplane (I have no lymph nodes left on the right, so there is a higher lymphedema risk). LPHH had a similar name to the nonprofit organization that had the sleeve! I started reading about it and decided, YES, I would volunteer. I leave August 18. Pray for NO HURRICANE.
Breastcancer.org has such a great educational and supportive mission. In comparison, LPHH is a very small step to helping woman who have breast cancer.
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Mexico Heather, what a wonderful thing to be doing! Hope you have great weather and it is a rewarding experience for you.
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So many more of you had surgery before chemo. I am doing 6 months of chemo first starting next week and the delay makes me nervous. I have several large affected lymph nodes and I hear and believe their plan to shrink them first but I am old (69 1/2) and impatient. Any advice
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Benji44 - I think your situation is common. One positive aspect of doing chemo first is that there is no waiting for recovery from surgery before you start chemo. Also, maybe chemo will be easier because you will be rested going in, and your arm won't be stiff. Once my surgery was done, I had to wait for the drain to come out before I could start chemo - that delayed chemo several weeks. So probably either way, there is some waiting involved. Best of luck and try not to worry.
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Benji, I had chemo first. The intent was to rid the one confirmed positive lymph node of cancer and shrink my 3.5cm tumor. It worked great. Lymph node was clean on surgical pathology and very scant viable cells in the tumor bed. The good think about chemo before surgery is that you know for sure that it worked. I think chemo first is more common than we think. Good luck with your treatment next week.0
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Thank you both for your helpful and encouraging information. It really helps me
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That wasn't a choice when I was diagnosed; but had it been I would have definitely had chemo first. I had a lumpectomy and I probably wouldn't be as lopsided had that been an option. (I look fine in clothes and don't really care, but still....)
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When I asked about the order, the Oncologist made the decision and the surgeons plan was always to take all the lymph nodes because of Grade 3 and the size of the 3 tumors in the lymph nodes. He said why bother to shrink them? It not changing your chemo treatment plan. I have also noticed that here in the South more doctors operate first and remove more lymph nodes by comparison to other parts of the U.S..
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My MO said they usually do a neoadjuvant chemo for hormone negative cancers,or if there are big tumors and the patient chooses a lumpectomy, or if there are no tumors, but the diffuse bed of cancer cells. Otherwise they always do surgery first.
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Hi Ladies!
Just wondering if any of you have the same issues I am currently experiencing.
I switched from Tamoxifen to Letrozole in February of this year and have had an escalation of pain in my left foot, along with hardly able to walk each morning when I get up and if I’ve been sitting for too long. Once I get going I am fine and I know this is due to lack of estrogen in my body. Anyone find any relief?
Also, I have yellowish discharge every day and it’s starting to piss me off - I thought menopause came with vaginal dryness???
Thanks for any info you’ve got!
Kim
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I am not sure what to peg the foot pain on. I have had it through each AI, and even during this 2 weeks off, there was still foot pain. Hmmm.
I have been touching base with the GYN. I like Replense, and use it every three days. There's been no discoloration since then. I was worried on my last visit, but it's the New Normal. I think might add some urinary tract health med in there, too.
Estrogen, I miss you!
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LOL, what a thought - missing estrogen?!?!?!?!?!?
Thanks for responding, vag discharge for you too mexicoheather
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One time. I keep having the gyno cuecke, because I feel like the skin is so thin and I had a hysterectomy when they took out my ovaries.
Went Old School and took out the ovaries.
I'm sitting in the Onc's waiting room now to discuss the AI and side effects. To be continued!
UPDATE: My options were: 1) Add Cymbalta 2) Switch to Exemestane for IA 3) Reduce dose of 1mg anastrozole to every other day and see if joint pain gets better.
I am going for Door #3 and the Devil I know. I am going to try it until Thanksgiving.
Also, if I just want medicine so I can sleep, I have to use the General Physician for that. I guess I will try knocking myself out at night.
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I’m so glad you found an MO who will support you taking less anastrozole. I’ve tried 3 and they all refuse to even consider it which would leave me taking less behind their back. (They wouldn’t even consider starting with a low dose and increasing slowly.) So now I’m not taking any, which makes me uneasy and also brings out my “question authority” defiant tendencies which may not work in my favor.
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I’m on Tamoxifen and have developed foot pain. It’s been several weeks and it slows me down for sure. Mine is in my right foot. I haven’t found anything that helps it yet.
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TaRenee
How long have you been on tamoxifen? I’ve been on it 1 and 1/2 years. I get achy joint pains, and some fatigue. Has anyone had any weight issues, as well as hot flashes, and night sweats like I do?0
