Starting Chemo September 2015; join us!
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I have been reading everyday and chearing and praying for everyone post surgery. I know it is frustrating that we are on two parallel tracks- Our real life that doesn't stop moving and our treatment life that scares us sometimes and doesn't always give clear answers. I am going through a tumultuous re-entry into my life post chemo.
I had "The talk" with my MO about sex after a hysterectomy and CHEMO. We talked about trying to keep that area conditioned with either olive oil and or coconut oil daily and to use silicone based lubricant. I told him it really kills the mood when I have to tell my husband specific directions like a football coach. "hut hut" Go left then right do not swirl around, push that button there three times and then get out. I pressed him for something else I can try to make that area not so rigid and sensitive. He suggested trying prescription "Scream cream" locally on the are and seeing if that would be enough without resorting to a small amount of topical estrogen to that area. Well we will see what happens. I am not totally happy about that.
My bigger drama is that both of my arms have started going completely numb at night. I can't sleep in any position and it is scaring me to death. my MO said to give it another week or so and if it doesn't correct then we will do an MRI to see if I pinched a nerve. He wasn't super concerned but that led to me freaking out about the possibility of bone met pressing on my nerves and I was in a hysterical mess. the first thing I am going to try is to go off Arimidex for one week and back on ativan to see if maybe the Arimidex is doing this. Its not a common symptom but the Joint pain is real ladies they are not lying about that. I am creaky like an 80 year old woman in my 40's and my hands have a crab claw. This morning is a new day and I am trying to get up and be positive.
OH also my cholesterol went to 270 15 weeks PFC. Any advice on that would be deeply appreciated. I am trying to not go on lipitor beause it can cause muscle aches and truly I am having a crap of a situation.
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ExerciseG - What an array of symptoms and side effects to be dealing with. Ugh. Love how rigorously you are analyzing each one and your options for coping with them - very smart. Keep pushing the docs - I feel more and more as though they are technicians focused 90% on cancer and 10% or less on our real lives (What about semi-normal sex?! Sleep?! Having feeling in my arms?!).
Re: cholesterol, if you're open, check out the high fat-low carb diet. My 65 year old husband has been on it for a year and all of his cholesterol numbers have improved markedly. ("Good" is higher, "bad" is lower.) More info here: http://www.dietdoctor.com/lchf
(I have read so many seriously bad things about lipitor side effects, I doubt I could be talked into taking it.)
Hang in there, keep posting and updating us. You're going to make it, you intelligent, stubborn woman!
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Southern- I doing Ok. Almost 2 weeks since last chemo. Starting to feel a little less tired. But I still have Chemo brain! My hair is coming in pretty good...look like I have a crew cut. (pretty gray, but I don't care what color, I am just happy to see hair.) Went yesterday for my simulation for radiation. Not what I expected. Don't want to complain, it was just pretty uncomfortable. O well, it could be worse. They recommended I do radiation laying on my stomach, because of size of breast and were lump was removed. Anyone else have to do radiation on stomach?
Lisa- Hope you are feeling better, good news about no cancer in lymph nodes. Will be sending prayers your way.
Artista- Sorry about issues with insurance. I thank God everyday for the insurance I currently have.
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Exercise - Ha yes drop me a line if you are ever in Portland.
Both arms numb? I know my upper arm was numb from the lymph node dissection but the feeling did return after a few months. I still have a few numb spots.
I also feel like an 80 yr old person first thing in the morning moving really slowly with joint pain. Mine is from lupron (estrogen blocking) but we are meeting with a naturopath to help solve the side effects.
Scream cream? Ok now I'm intrigued.
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Wow. You all have been very chatty since I was here last! So sorry to those of you (MLisa, Artista, Exercise) experiencing such a variety of challenges and congratulations to everyone moving forward with courage. And happy birthday, Tessu!
I'm just over 7 weeks PFC and have a bit of pale fuzz growing at last. My hair is kinda salt & pepper so I hope I get a bit of pepper back. Even have a few eyebrow hairs all of a sudden!
Had Zap #10 today. Not too bad so far but I guess it will start getting red & sore soon.
I'm so grateful to all of you for being here. I haven't had the energy to go out to support groups, especially since there was a wonderful one right here and all of us with similar timing, unlike the one time I did go to a meeting in person. They were all long past where I was.
Thanks to all of you!
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Trying not to dump on myself. I don't know if it's the Herceptin or the AI (anastrazole), but I have much less energy now than a couple weeks ago. Have not been able to push myself to do more than walk my dog lately; a couple weeks ago I was riding the exercise bike almost every day and loving it. And I haven't done the back- and neck strengthening exercises in over a week; they make what muscles I have left hurt, and depress me because I remember how much more I was able to do last spring (befor bc).
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Goodmorning Darling Tessu
The fatigue is a really frustrating SE of treatment. I too experience a week where I think yay I feel strong and workout every day then this week I only got to the gym twice. Im not on AI yet and I have one more radiation session to go.
Look how much we've been through not going to toot our own horns but toot toot we are amazing. Listen to your body it probably needs a rest we are healing.
I too look back at what I could do its only natural to compare but I look at what Ive gone through the last seven months and I am way stronger than I ever thought. I look forward to the challenge of working through this year to rebuild and heal.
Give yourself a break and tIime you will get there.
Much love Maria
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Feeling better. Baked myself a chocolate birthday cake (ok a few days late but I wanted one!!!) and finally got back on the exercise bike for a short but encouraging "workout". Also my younger son is home from college for the weekend
Thank you, Cinque/Maria, for your kind comments. I've since also chatted with some local bc women online, and it seems the post-chemo fatigue often lasts for YEARS --- and here I thought ok maybe a couple months. Same with the brain fog. And there's apparently nothing you can do to speed the healing besides rest, sleep, eat healthily, and do gentle exercise. So ---- yes, I have decided to be a lot more patient with myself, focus much more on "the present moment" instead of panicking about how much bc has taken away. And I have to admit the past couple days have felt a lot easier.
Hoping everybody here has been enjoying a restful and happy weekend
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Hello! Checking in and saying hi. I am 11.5 weeks PFC and 3 weeks post ooph and hysterectomy. Back to work 3 days a week and feeling pretty good. Hair is returnng but I'll be sporting a wig for a few more months until I am comfortable. I started Femara a couple weeks ago. So far so good. No probs. Still have some neuropathy but it is MUCH better. I'd estimate 80% clear. How are others doing with their neuropathy? Anyone all clear? Found out I have osteopenia. Grrrrr. Am taking calcium and Vitamin D now. Anyone taking Magnesium?Bought a yoga mat-- anxious to give it a try. I have lost muscle and flexibility like crazy.
Best wishes to all. Would love to read your updates!
Shelly
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Glad to hear you're doing so well, Shelly!
Three doses of docetaxel gave me neuropathy in all fingers of both hands, after only one dose. I was given the protective cooling gloves for only the last two doses for my right hand and only the last for my left hand (the iv had been put too low on the second dose. Last dose of that was late October. Three doses of CEF followed; I am now 12 1/2 weeks pfc. At its worst I had no touch feeling but lots of burning pain in all fingertips, but things quieted down during CEF. At this point it seems to have stabilized into no pain, just partial decreased touch in all laft hand fingertips plus my right thmb and second finger. That doesn't seem to be improving anymore, but I can live with it (have to). Several women here and on other threads described neuropathy in their feet. After the third/last docetaxel dose, I had about a week of brief "electric shock" pains in both my lower legs and feet, mostly at night, but luckily those are long gone. I started B vitamins after the finger neuropathy started (from advice here) and have continued that
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Shelly - Good for you! You give me hope....
During the last 6 weeks PFC, feet have gone from mostly numbish to painful. I hope this mean the nerves are returning (and complaining) and that it will improve from there. All ten fingers are still partially numb, but I have full functionality (can thread a needle, sew a button, chop food), so it's less annoying than the feet. I've been taking B12.
My post-lumpectomy hematoma is slowly resolving. I'm no longer in pain just bending over and was able to shower without the sports bra on for the first time yesterday.
Again, very glad you're doing so well, Shelly - thanks for posting good news. It's important for me as a slower kid in the class to see there is some light further along in the journey.
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Good morning ladies.
MNLisa, glad to hear your hematoma is shrinking and your pain is lower. I'm four weeks past LX/ALND and am finally improving. It took going to physical therapy to stretch things out for me.
I am 10 weeks PFC today. I still have some neuropathy in all my fingertips but it is not disabling at all. It improved slightly after chemo but seems to have stabilized. My joints especially my hips are very achy when I first start moving. I'm hoping that goes away when I'm off herceptin. Last week I started taking gabapentin for hot flashes. The frequency seemed to decrease but still had some flashes. I upped the dose last night so we will see what this week brings. My hair is coming in slowly. I've buzzed it a couple times to 3/8 inch to even it up and get rid of the chemo white hair. I will go to 1/2 inch next time and probably keep it up until it's all even. There is lots of white hair in what looks like a bald area in this picture.
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good afternoon!
Neuropathy is a b*tch! I have my neuropathic itch but I am on 1 pill of lyrica a day and I am afraid to go ff it to see if my neurpoathy has faded or not.
On the bright side I finished my last radiation treatment today. A little sly smile from the top of the hill. My hair is coming in brown and silver... although in this pic it looks blonde! (9 weeks PFC)
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Still dealing with insurance fuck up! I do have Medi-Cal wrongly because someone awhile back set my income to 0 and I got bounced out of the Blue Cross I had via Covered CA/exchange. Lots of back and forths, pointing fingers. On Fri Medi-Cal said to go ahead and use them this month and will set me to term on 4/1 due to income and to call Covered Ca when I get the letter saying it's terming to get back on BC. Well this is great except I found out if I do the Medi-Cal insurance this month, when I get BC back on 4/1 it's going to read as new applicant, which means starting back to 0 paid in deductible and out of pocket. I've paid 2K and am almost at having to pay no more and everything else being paid for for the rest of the year. So it's in my best interest $ wise to get reinstated back with BC with an effective date of 3/1 and not using Medi-Cal (cancelling it).
So today I call Covered CA. The guy I got was very helpful. Lots of wtf in my account. First step was to get me onto a plan eff 4/1. Then try to get it back tracked to 3/1 eff. First the plan I had wasn't an option for me. WTF?? Nothing has changed so how can the plan I had not be an option to get in again! OMG! The guy is determined to help me thankfully. So many would say/have said sorry, the computer says this so it's the case. He finally got it to where I got my plan back but now the premium says 600 a month! WTF?? I'm 151 a mo cuz I get assistance! This guy is so nice. He's like wtf himself and determined to get this straight. After an hour of fighting the computer, and me praying my phone doesn't disconnect like it has before and I'd have to start over with a new person, it's set. But he's unable to set my eff date to 3/1 so he sends a message to the escalation dept saying cancer tx is on hold, I need to be reinstated immediately that it was an error and I need for the $s I've already paid to count, and not start at 0 again. He said they should get back to me within 24 hours. Well today is gone so tomorrow afternoon I'll be calling to find out wassup. He gave me a ref # so the new person can find the notes and go from there so we'll see! :X
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El Tigri on my way home from last radiation too☺I cannot stop smiling. My hair is coming along too not as fast as I would like it I wanted it back the day after chemo. Its a long difficult road but step by step we are getting there.
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How did you guys find the radiation to be?
I have my "do-over" sim this coming Monday then it's off to the radiation races for me. I'm really dreading the schedule of going 5x a week for 6 weeks. I work full time so it's going to be hard to figure out how to make that work.
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I found it easy. I had some fatigue after the first week but walking to my apts and exercising at home I think solved the fatigue problem. After the second week of rads I didn't notice it anymore. I did pink up after the first week but that was my RO's goal, pink up and not crisp up. The breath hold went well, no problems unless I had alot of caffeine before hand. The cream (calendula) I asked the RN's for were abundant and free
The last week I did get a little red and just now started to peel in my armpit and it's a little tender.
The hard part was the scheduling or if they were running behind. Every apt w/o scans (they took mine once a week) lasted about 15 -20 min.
Working FT through it could be hard. I work close to my rads place so it was no big deal but I would run into issues if I had to travel a distance for it every day.
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Thanks Tigre,
As the crow flies, my hospital is very close to my office, though depending on time of day traffic can make it take 20 minutes to get there. Without traffic, it takes about 10 minutes to get there.
Parking there is always difficult - their lot is always full. They will literally parallel park cars in front of those parked in spaces to fit more cars in there. So if you park in the garage, you may have to wait a while to find a garage attendant to move a car so you can get out. They do offer valet parking - which saves time on the way there, but adds time on the backend bc you're waiting forever to bring your car around. I could take a taxi or uber there and back - which might be the best solution of all if not during rush hour.
I'm trying to figure out what would be easiest - have my appointments first thing in the morning then go in to work, have them during the middle of the day (step out and come back) or at the end of the day and go home.
The tricky part with the end of the day appointments is that I have to pick my son up from preschool by 6:00 so I'd have to really figure out what time would work so I could still get to my son in time during rush hour traffic.
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Edwsmom, my rads appointments were at 3:00. Some days were fine, others they ran really late. At my place, a couple of people being late to earlier appointments threw off the whole schedule. An earlier appointment might make your day more predictable.
I finished 6 weeks of rads on Friday. I had a few days of fatigue, and my skin finally got irriated enough to make a bra uncomfortable the day after rads ended. My RO said the worst would be over two weeks after that area was last radiated, which is the end of this week. My last five treatments were boosts, and it's the non-boost areas that are whining.
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Scotland - Congrats on finishing radiation! Woo Hoo! Thanks for sharing your experiences.
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Edwsmom - I agree with Scotland, my place the earlier the better
My RO recommended no bra if you can
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Edwsmom --- giving another vote to scheduling for early morning if you need consistency. I changed all my future Herceptin injection appointments to morning, after being almost late for a midday time slot searching around for a spot to park --- then having to wait an extra half hour anyway, because of the morning delays adding up. I hope you sail through your treatments with no SEs :
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All of you brave women doing --- and finishing --- rads --- you all have my deepest respect. What incredibly strong warriors you are!!! I'm still feeling so drained from just surgery and chemo, I doubt if I'd have had the energy to do rads too right now. You all are AMAZING!!
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I hear you on the no bra recommendation! I've been working from home this week, as going to the office with one boob is a bit awkward. :-) Overall, radiation has been a piece of cake compared to chemo.
I'm 10 weeks PFC today! Next week, I go to the MO for a follow up. I suspect she will make good on her threat to put me on Tamoxifen "for at least a decade."
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Hi edswmom
Radiation was fine. I managed to work full time. My skin behaved well nurses and doctors kept good eye on it and prescribed different ointments through various stages. Fatigue hit end of week five but Im managing. I had my appointments late in afternoon so I could go straight home. I also could get to the gym in the morning and was keen to get exercise back in. At the beginning it is daunting the every day routine for six weeks but it has flown by and wasnt as bad as I thought. Hope you find it ok.
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Hi all,
As of today, I am halfway through rads (28 total) and just starting to feel a bit sore and perhaps a bit stiff. I was also feeling a bit more fatigued today, but nothing compared with the way chemo wiped me out. So far the worst part is the drive each day, but I imagine that will change if real side effects develop. I work at home so have some flexibility with my schedule. Not a morning person!
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Hi Luzeela
With rads I definately felt more fatigued by end of week. I did sleep heaps more and rested up on weekends I think that definately helped me get through. Nurse told me rest and plenty of water did the trick. Take care
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Feeling discouraged. Just cancelled plans to attend an out of town annual 3-day work-related conference next week, one I look forward to every year. Having missed one appointment and gone late to two others during this past week alone, and still struggling so much with concentration and memory difficulties, I doubt I'd get anythng out of the conference if I attended this year. Would probably screw up my train connections and get stranded in the middle of nowhere, for starters. And although I've improved a lot since chemo, I still tire way too easily from the tiniest exertions --- that's worse than a month ago. Maybe the Herceptin is behind that? Everybody else seems to say Herceptin is a piece of cake. I am trying to console myself that there's another similar conference next year and hopefully this brain fog will be gone by then..
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tessu sorry you are feeling that way. I hope too it will get better next year.
Edwsmom I started back to work full time 2 weeks into rads. I was tired for the first 2 weeks back into work then I started to feel better the last 2 weeks. I did rads before work and it did make for a long day but the time went by fast. I think having work to distract me made the time fly.
I am 13 weeks pfc today and am feeling a bit more tired after finishing rads 2 weeks ago. My skin is all healed form it's bad burns under my boob and is now just itchy new skin. My ro said I was doing really well yesterday for my check up. I have lost a total of 30 lbs since my heaviest during chemo. The most weight came off starting in Jan. I do feel good, but get reminded to slow down and remember that I am in active recovery. The only crappy thing is that because my feet are still slightly numb due to neuropathy I stubbed my pinky toe last Thursday. Went to podiatrist today because my pinky was numbish. Turns out I have a compression fracture. I have to have my toe buddy taped together to heal for the next 6 weeks. At least the doc didn't have to give a shot of lidocaine and pull it to get it to set straight.
CarolinaAmy did you have surgery yet?
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1 day PFC. Had Taxol #12 yesterday.
Had rads planning on Monday. Start rads on 3/30.
Going to enjoy the 3 weeks of no treatment or appts.
Haven't posted much but read a lot and have learned so much from all of you. So thank you.
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