Starting Chemo September 2015; join us!
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mom2Boo&Buzz - Prehab lymphedema counseling today was extensive and helpful. She taught me how the lymph systems work and why surgery can impact it. New to me: radiation can cause lymphatic damage too. She also took ten circumference measurements on each arm for a baseline.
I came away with lots of specific exercises for specific time periods post-surgery. As soon as my surgery is scheduled, we will schedule a proactive rehab appt 3 weeks after that. (And I'm to contact her in the meantime immediately if I have swelling or pain.) Did you receive specific exercise instructions?
Best of all: my lymphedema therapist is a breast cancer survivor. So she's seen this from both the patient and the provider perspectives.
(In other news, my neuropathy and muscle weakness both continue to reduce gradually. Actually made the circuit of the grocery store this morning without feeling like I had run a marathon.)
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Minnesota Lisa - wow! I have not been given any exercises yet. I've been told not to do anything yet ( I;m 1 week out). I will ask next week at my appointment about exercises and PT. Are there any exercises they suggest for the first 2 weeks? There is a gym with an exercise specialist at the Cancer center that is free and available to anyone who has or has had cancer. Right now I'm doing what feels ok movement wise but no specific exercises.
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Mom2Boo&Buzz - My lymphedema therapist said the goal from post-op through first two weeks is to stimulate non-impacted lymph glands (neck and groin) and to ward off cording. Example: sit or stand w/ good posture, drop chin to chest, bring back up. 10 reps, once/day. They are more movement repetitions than what I think of as "exercise." Do ask your providers about these. Your exercise specialist should be able to help.
I also received this American Cancer Society brochure on lymphedema: http://www.cancer.org/acs/groups/cid/documents/web...
Wishing you good luck!
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hi all. Maybe a bolus, I don't recall! Lol. Chemo brain!
I had my first PT appt. No signs of lymphedema, but was fitted for 2 sleeves in case. ALND + lymph node rads puts me at high risk.
Tumor markers have commenced. CA 27-29 baseline is 25, which is normal. And away we go, survivors!!!
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cajun - it's a sticky cold sheet they drape over ya.
I had no warning either. I did read about it a lil before they sprung it on me.0 -
I start radiation next week and I have a bolus. Not sure how I feel about it so far.
Of course, not sure how I feel about radiation at all, but I'm told it's important, so must keep moving forward.
Ya'll do whatever you can to avoid lymphedema! I don't have it bad and it's still an enormous hassle. Radiation won't be helpful for that, either. The PT told me to wear the sleeve during the day and the wrap at night throughout all my treatments and for a month afterward.
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Lila- thank you I will try that!
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I am so glad I had control with my Pain Clinic neurologist yesterday. I've had a tiny extremely painful lump on my left (non-op) arm just below the elbow since two weeks after my last chemo dose. Oncology just said "I've never seen breast cancer mets below the elbow or knees" and wouldn't look at it; husband derisive (apparently I complain too much). I've been worried to death because of my high recurrance risk pathology.
I am so grateful that my neurologist actually took me seriously and examined my arm. She said it is most likely a thickening of the ulnar nerve called "neuroma" that is NOT cancer. She's seen them in other chronic pain patients with nerve root damage. I surprised both of us by breaking out in tears of relief. I guess I still haven't completely gotten over my cancer fears, although they're thank heaven no longer in my mind all the time
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Tessu: I'm so glad you got answers. Did the neurologist have a plan for coping with this new delight?
Ladies, don't mess with lymphadema. I started showing symptoms in late September, and was symptom free after six weeks of lymphadema therapy. Luzeelu is right: lymphadema is a huge hassle. Nip it in the bud!
I have radiation 15 of 30 today. No major problems to report, although a bit of fatigue is creeping in. I'm getting 10 bolus treatments, every other treatment. After next week, I'm done with the bolus unless the RO decides I'm not pink enough, then he'll add more. The last week will be boosts, so the non-boost areas can start healing.
At 6.5 weeks PFC, the hair on my head and eyelashes are coming along nicely. The eyebrows are more straggly every day.
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mom Yay on pcr! Lila congrats on finishing and Amy glad you were able to do #11. Sounds like you are all set for bmx and have done lots of research. Shelly I've been back to work 3 weeks after 5 months off & it does feel weird.
I am super tired too cause I am doing rads also. Thankfully I only have 3 more whole breast left then 5 boosts. My poor boob is looking angry red from skin contact. I had some actual pain this morning and asked my ro nurse to take a peek at my boob. Boy I'll be glad when I don't have to flash it daily. Anyway ro nurse gave me saline soaks to do to help discomfort. Never thought a cool wet salty cloth could feel make me feel better but it did. Hopefully having the weekend off from rads will help. if it wasn't so damn cold here in philly I'd go outside and freeze my burnt boob if it would help. So want to be done now. I'm at 22/30 treatments and am done feb 24th. Like a lot of us I don't know how I'll feel about being actually done with active treatment. It's like my safety net will be gone. And as a triple negative I won't have the security of hormone therapy to help safeguard me from reoccurrence. Just follow ups with docs every 3 months. I hope time will not only heal my body but also my mind which tends to over worry.
On the plus side hair is really growing and turning darker in the back. In the front I am the color of mousy grey. Too much at 45. Can't wait to dye. Also I have lost 22 lbs in total from when I was my heaviest during treatment. I actually have to shop for a size smaller pants. Clean, healthy eatingdefinitely helped. I do feel ok, just the damned neuropathy in my legs drags me down when I'm tired which is most days now thanks to rads. Happy weekend all.
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Bolus, yes. I will have it for 17 treatments.
Had an interesting conversation with a woman who decided against chemo and was clearly still being tormented by the choice. I'm glad I didnt have to make that decision.
Went to dinner with hubby tonight. Just no energy still. But sending all you beautiful ladies wishes for a wonderful weekend.
Also, at least Strep Throat - the Sequel is winding down...finally!
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scotland: my neurologist said since the painful lump on my forearm is small, no treatment other than maybe cold packs. I'm also being more careful about not resting my arm with that part down. But I've been dealing with chronic pain issues for over a decade; this one scared me because it is new, and there's a lump, so with my aggressive bc path of course my brain screams METS! Stupid brain.
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Shopgal - Thank you for sharing your experiences. We have the same diagnosis with you being about two months ahead of me. (Big difference: I had my chemo first.) It's helpful to hear what to expect during radiation. Mine will probably start around the beginning of March.
Yesterday I got the results from Wednesday's MRI and my surgical consult. Good news: radiology says the tumor is essentially gone.
Now I have the "lumpectomy or mastectomy" decision to make by Monday. Surgeon patiently answered all my questions. I won't list the pro's and con's because so many of you have been down this path before me. I appreciate having read your considerations and decisions; they are going to help me make up my mind this weekend. Leaning toward lumpectomy (although it will be more like a "tennis-ball-ectomy"!) at the moment.....
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Tessu, if I had a random lump anywhere, my brain would go to mets now. I'm sorry you have something else to deal with.
Cajun: glad you're on the mend!
Minnesota: great news on your scan results
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tessu, I would have thought the same. I'm sorry you're in pain, but so thankful it's not cancer!!
Lisa, woo hoo!!! Best of luck with your decision
I was talking to a woman at radiation yesterday and she said, "Oh, just like Angelina Jolie!" I said, "Ummmm...not really. Because she didn't have cancer." She didn't have chemo, radiation, or 11 lymph nodes removed. She is not immune compromised, bald, nippleless, and taking aromitase inhibitors for life. People are clueless!!!!0 -
tessu - I'm sorry you are dealing with this but I'm glad it's nothing serious, I'm sure we will all go straight to that thought when anything seems out of the ordinary for a while {hug}
luzeelu - good luck with radiation next week
Scotland - good to hear things are just moving along, I will have to ask about bolus and boost when I am ready for radiation, I don't know anything about them
Shopgal - so happy you are close to being done. You are so right about flashing everyone, it seems so commonplace now. When rads are done you will get your energy back and find a new normal, just like we all will
cajunqueen - you have dealt with so much lately - I hope you can be germ free from now on - I'm jealous that you had dinner alone with your hubby, we need to do that - all our alone time has been dr visits and in the hospital. Yes, I too hate the Angelina comparisons, good for her for preventing but she never had any fighting to do, you are fighting with strength and grace, never doubt that!!
Lisa, great news on your MRI - it's a fabulous feeling to know that going through all this nasty shit has actually done what we wanted it to do! Good luck on your decision, whatever you do will be right for you {hug}
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At least my hair is coming in
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Tessu - Hooray for hair! You are beautiful.
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Oooo Tessu! I wish I had all that hair! Mine seems to be taking its own sweet (and slow) time. 5 weeks PFC tomorrow.
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Southern - Thanks for sharing that - it's heartening to hear from someone who went the same route. (Not that the other choice isn't right for some as well.) I feel exactly the same: if I need a mastectomy (even if it's immediately after lumpectomy because margins weren't adequate), I can always do "Plan B" if necessary.
In other news, I'm 19 days PFC and worked out for 30 minutes today (first time in about a month I've been able to manage that). Felt great!
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Tessu, that's a lot of hair! You look great 👍
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Does anyone else get benadryl with just Herceptin? I get Herceptin again tomorrow and I really don't want to get benadryl if I've never had a reaction to it before. Tomorrow would not be so bad since I can't drive so soon after surgery anyway but after that I'm driving myself.
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looking good, Tessu!!!
does anyone have severe itching PFC? It started a week before rads, so it can't be that. In the grand scheme of things, it's minor, but I am SO itchy. I scratch all over, almost to the point of blood. Lotion helps a little. Not too much. Any tips? Maybe it's the toxins exiting through the adipose tissue and skin?
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Mom2, No benadryl with herceptin for me either.
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No benadryl, no corticosteroids given with Herceptin here, either. The bumpy rash from the cytoxan is almost gone, but I have another low-grade rash over a larger area that is nonbumpy, just little red spots. Since it's not itchy, and the oncology docs have not been interested in any other side effects, I'm not even going to bother reporting it, unless I get other more serious symptoms.
Worst persistent side effect is brain fog --- extreme difficulty concentrating (can't enjoy novels, can't keep with the story line), memory problems, and loud tinnitus.Hoping this will also pass eventually...
Thank for all the compliments on my hair
I'm 6 1/2 weeks PFC. I put away my chemo beanies a couple weeks ago (too sweaty) and never got around to buying a wig. Going for COMFORT because I deserve it!0 -
Cajun, it could be the toxins leaving the body or a residual effect of Taxol. As long as it's not nueropathic itch, yikes. They can prescribe you Gabapectin, it works well and if that does not Lyrica works wonders.
Tessu - yeah for hair! Does every one find them selves rubbing thier head to feel the new hari?
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mom2--I do get benadryl with the Herceptin. Not sure why.
Southern and Twiggy--Are you two doing rads? I meet RO for the first time this Thursday. I hope I'll be able to fully extend my arm in time to start. Still stiff but getting better.
My MO says rads should be a breeze compared to chemo. I don't know. I hate holding my breath and trying to hold still. Here I go into baby mode again. LOL.
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fidget, I am doing rads also. I had a re-lx and more nodes removed last Monday so waiting to heal from that. I have an ro appt next week. I imagine we will schedule everything then. I'm not looking forward to the breath holding either but I'm sure I'll be able to do it. My arm and shoulder area is still very sore so I hope that isn't going to cause any problems. The biggest issue with rads for me is that I will have to live away from home/work.
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Oh wow, Twiggy. I guess I'm fortunate that my radiation clinic is about 15 minutes from my house. I'm still shocked my little town has the medical services that it does.
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Tigre, indeed yay for hair! I rub my head constantly :-)
Hang in there, all.
Octogirl
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