August 2015 Chemo Group
Comments
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I have four radiation treatments left out of twenty. For me it has been a piece of cake compared to chemo. My hair is coming in, its about 1/8 of an inch. I've been able to rest during radiation, and am not really having side effects. Even my skin still looks good. I have herceptin every three weeks till August. I forgot that my deductible started over for this year and just got my first herceptin bill. One infusion is costing me $3300, and its due is 15 days. I guess I will meet my deductible of 6k in the next month. I don't know what I would do if I didn't have savings.
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Question: for those who had Mastectomy, and going to/ having radiation, did your MO explain why? Is it because of the grade? Lymph node involvement? Her2 status? Cos I was told after Mastectomy, "there's nothing to radiate on"
Still have the "pain in the neck" from Tamoxifen chills (MO said x-ray if it gets worse).
Wow! RavenSally $$!! I didn't even reach my max out-of-pocket of $1500. (not even close)
Ok, so the other night I was watching TV when the Hershey Kisses commercial came on. My first thought was: Oh let me get some of those, throw them at WorryWart, "Catch! Here are your kisses!"
(he was sick couple weeks ago, & I was told to stay away. suddenly out of nowhere, he threw out a "no kisses tonight!" crazy guy.) 
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I am doing well. Actually have some energy, but I meet my RO Thursday, so she'll take care of that. My hair is growing well and Herceptin didn't stop my period from coming back. MO said he'll still wait till rads are over to start anti-hormonals, whatever that ends up being. My deductible is $7,000 and I have already met that with two Herceptin infusions--waiting to see which arrives first: tax refund or medical bill. We haven't used a credit card in years but may have to park that bill on there for a few weeks. :-(
Superius, great idea on the Hershey kisses! Pelt him good! And I love your pic--is that the same as the t-shirt you mentioned?0 -
Yup, that's the t-shirt.
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It's so nice to hear from so many of you!
Superius, I have six high-risk factors for loco-regional recurrence (my age, grade 3, triple-positive, close deep margins after MX, multifocal tumors, and one I can't remember). My RO said that I'm in a gray area, to be sure, and that if I had two fewer risk factors, rads would be a no-go. I, too, was told in the beginning, by my surgeon's office, that I wouldn't need rads after MX, but both my MO and RO agree that it's a good thing to do. They both figure it's easier to radiate now than it would be to deal with a chest wall recurrence, so that's what we're doing. I figure at this point, I'm all in.
Still no periods here, but I'm starting to feel less menopausal, if that makes any sense at all. Less dryness, more sensation. . . Also some pretty great mood swings. I, too, am waiting until after rads to start Tamoxifen, and my MO wants to discuss OS+AI instead, but figures she'll give me six months on Tamoxifen first.
Those of you who have high deductibles. . . I'm so sorry. I don't make much money (at all), but one thing I do have is good health insurance. I have no idea what I would have done if I'd gotten my diagnosis even a year earlier, when I had the crappiest health insurance in the country (literally).
MsBrompton, I'm all about #cancerhumor, all the time.
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Spurius, I am doing rads after mastectomy due to node involvement (1) and my age.
Still no periods, but I bought a pair of white shorts for my upcoming trip. I fully expect it to start the minute I put on those shorts.
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Thanks Kate & VickiRides. I will confirm with my MO next month (ON GOOD FRIDAY! HA!), her biggest worries was the oncotype (27, hence chemo) & my age of 42 & no family history (Genetic testing highly suggested) I know my margin was clean & no node involved (that's what my surgeon told my sister).
Here, Here, Kate, for university benefit! I work at the university, too (state system). So even I don't see much cash (compare to private sector), can't complain about the benefits. -- the total amount i paid last year is close to how much WorryWart paid for 2 months the premium (not including prescriptions). Well, a state university is definitely big enough of an organization to negotiate with insurance co.
& LOL at the White Shorts. I can feel my ovaries trying to come back, & right on time, too! seriously?! I have a white dress in the closet that I keep thinking, should I, should I not...
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Doing good here, too. One week of rads in the book and 6 more weeks to go. Hair is coming in under all the white fuzz, but even the new stuff is mostly gray/white. No eyelashes or eyebrows yet. I love feeling better! I've been going to the gym and even went on a hike a few weeks ago. Tamoxifen is going well so far. I've had some joint stiffness/aches, but a little exercise seems to help that a lot.
So sorry to hear about the high deductibles some of you are having to pay. It's just so wrong that people have to pay so much. Dealing with cancer is more than enough to have to worry about.
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I bought Hershey Kisses to throw at WorryWart on Sunday. HA!
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superius - I almost had to have radiation because of a close margin but instead went back under to have more tissue taken out. Even after the mastectomy, I was surprised there was still quite a bit of tissue they managed to get the 2nd time around.
Ive been taking AI + OS since November and I do have some mild side effects, but honestly I can't tell if it's related to the meds or just recouping after having done chemo. I go for my second lupron shot (it lasts 3 months) next week so I'm going to discuss oophrectomy with my MO. I still have an exchange surgery left to do, but I'm wondering if I should do an ooph at the same time.
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Met my RO today. She said they will radiate a larger area to include the sentinel node site--she said the PET scan lit up there but the biopsy was negative and the LX showed CPR to chemo, so she can't prove whether cancer was there or not and especially with HER2 they treated it as if it was there. Does that even make sense? In any case, my incisions are not fully healed so she isn't scheduling the simulation for another two weeks. Then I'll start radiation on the 22nd. 28 for sure, possibly some boosters.
Superius, glad you got the kisses! Wish I could see his face!
What stinks about insurance is that we choose the high deductible in order to have a tiny premium--DH is self-employed so it's all on us--but we also get to deduct it all. But when the ACA went into effect our premiums doubled! So now we have a pretty high premium (2/3 what we paid before with a slightly smaller deductible) AND a high deductible. Not about to switch insurance in the middle of BC treatment though.0 -
Went for my 6 month follow-up today. ALL CLEAR! Wanted to say thank you to everyone on this forum for all your support. It really helped me through the darkest days.
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Yay, Ms. Brompton. That is great news!
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Awesome news MSBrompton! So happy to hear that
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Yay, MsBrompton!!!
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Yay MsBrompton!
I have rads because I'm stage IIIC and they're throwing the kitchen sink at me.
Lots of node involvement (22/25 positive) and the hope that rads will destroy any little bastards hiding out and waiting to form new tumors.I've had 8 radiation treatments with 25 more to go, and so far so good. I've had a bad flu/cold this week & my RO today asked me to get bloodwork and a strep test tonight, so that's on my Friday night agenda. Woot!
My MO gave me permission to get my hair colored last week, so now I have a cap of dark golden fuzz instead of gray & white fuzz, which is an improvement. I also learned how to wear false eyelashes for the first time in my life & tried them out on a date night last week--I think they looked awesome!
Except for this flu/cold, I've had a decent amount of energy. My main complaints are intense muscle and joint pain in my thighs & some neuropathy in my left hand, but nothing unmanageable. Funny how cancer changes your opinion about what's manageable.
Hope you all have a healthy & fun weekend!
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Hey JenPam, high 5 to you for remaining so positive. "Nothing unmanageable" - I guess we all learn to shift our definition of what is manageable...
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I've had a really hard couple of days. There are some really great things (buying a house! finally!), but there are some other things, too, and I need to let them off my chest so they don't snowball into abject chaos. You ladies have been such a beacon of support over these past few months, so here goes. . . .
I got denied for life insurance because of "minor mitral valve regurgitation," which I didn't even know I had until the insurance letter came. Of course this is because of Herceptin, but why the hell didn't my doctor tell me after the last echo? I've placed a call. I hope to hear back from her, and I hope beyond hope that it's nothing serious. I take cardiac health very, very seriously, and this news kind of knocked me back onto my ass. I'm a big fan of quality of life, and I've seen what heart disease can do to people. Any words of wisdom are appreciated on this front, especially because I'm still getting Herceptin and left-sided radiation.
Radiation is a drag, especially when the hospital is shutting down the main generator after you've been sitting in the waiting room for half an hour. I had to leave and come back today at the lunch hour, at which point the machine malfunctioned during my zaps. I guess we got that out of the way, and the good news is that I only have 21 more days of zaps.
My dad, who has Parkinson's, isn't doing well, and I can't drive to Ohio to help my mom, given the daily zaps. He's hallucinating a lot, and I'm worried that we're going to have to put him into a nursing home, which nobody wants. Dammit.
On top of all that, teaching hasn't been going especially well this semester--that was my refuge during chemo. I'm not sure what the deal is. Maybe it's just February in the Midwest?
I feel like a sweater that's unraveling. . . . Pull my thread, and I'll come undone. (Cue that 90's song by Weezer if you choose.)
But I still have love and light and a sense of humor, at least most of the time. And the possibility of a new (to us) fantastic new house, in a historic district, built in 1918, and loved very much by its current owners, who are moving out of state to take care of a relative with--get this--cancer.
Wow. What a week, and it's only Tuesday!
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Kate-Hang in there. You definitely have been handed a truckload of crap.
Your new house sounds amazing and nice to have something exciting to look forward too.
I feel for you as you deal with your dads situation. I fully understand the stress it is causing and I hope your mom is coping ok. It is hard when you can't be there to help out.
WTF power issues while in Rads? That is crazy
Remember this semester will pass. Hopefully things will get better.
I'm thankful that I had life insurance before I was diagnosed. I didn't think anyone would give us life insurance post BC.
I am also guessing you have more hair today than you did yesterday. That's a bonus!0 -
Kate - sorry to hear this list of downers. But the new house sounds wonderful. That heart valve thing can't be anything much surely or you'd be symptomatic. Apart from that bit of leaking, was the echo OK? I have 12-weekly echos too, and they always come up with some crap or other (I had a "pericardial effusion" one time but the onco said just ignore it, and it was gone the next time).
Agree, February is not the best month either. Soon it will be spring, and soon you'll be through the rads. And then all will fall into place. The other thing to remember is Herceptin is a seriously effective drug, and even though it's got side effects, it's also zapping any remaining cancer cells!!
Hang in there
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Thanks, Dee and MsBrompton! I'm feeling better now. My dad saw the doc today and had his meds adjusted; the doc is ordering a bunch of labs, too. So that's good. It looks like the house deal is going to happen, and that's good too. My MO's office called and told me to settle down (not in so many words) about the heart valve thing, because it's normal on Herceptin and--get this--I had minor mitral valve prolapse show up on the very first echo. I guess it's really common, and most people who have a mild version don't even know they have it. None of that explains why it disappeared on the second echo and then reappeared on the third, but, hell, call it a medical mystery.
In even better news, my sense of humor came back this afternoon, so I'm much less of a sad sack than I was this afternoon.
I suspect that my ovaries are waking up and speaking in code to one another about how much estrogen is enough to make me go just slightly round the bend, but without stopping the hot flashes. . . .
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Kate, sorry you've had such rough days. But I'm glad to hear you are feeling better and the heart valve issue doesn't sound as worrisome as it could be. I hope things improve for your dad with the meds adjusted.
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Kate, I'm glad you're feeling better. I love that in your first post you said you still had love, light and your sense of humor despite all that's been happening. I don't think you can go wrong with those things. I also think you can add strength to that list because you're nothing short of a bad ass too.
I had no idea you could get life insurance with a BC diagnoses. I thought I read somewhere you had to be 5 years out or something. Will you be able to reapply/appeal after you're done with Herceptin?
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Kate, I am so glad you are feeling better !
From my Echo in Dec, it says I have "Trace mitral regurgitation" (besides the patent foramen ovale - the hold between the upper chambers that supposed to close at birth). Both, I was told quite normal. From a previous Echo 3 yrs ago, I was told I have Heart Murmur.
I think.... I have some life insurance through the university (I think they put you on the basic one...) . Need to double check... cos my MO recommended Genetic testing. The Genetic Counselor said that might affect someone getting life insurance.
I have my next MO appt schedule, they gave me .... Good Friday!
... Although i think I should email her earlier.... I have some discomfort on my non-BC side last few day -- weirdness/ tenderness/ soreness. & I am a little freaked out... thoughts? 0 -
Superius, I also have a basic policy through the university, so I'm not completely uninsured. I just worry about my partner if something happens to me, especially because of the new mortgage!
On your non-BC side. . . Are you pre-menopausal? If so, it could be hormonal. If it doesn't go away in a week or so, you might want to ask to see your onc before Good Friday. It's probably nothing, but piece of mind is worth all the life insurance in the world.
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we've had life insurance for 10 years. I just got the renewal today. No questions. I'm sure if they knew about the cancer they might ask some questions however my husband said that due to the type of insurance we bought they have the renew.
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Kate, I am pre-menopausal. the weird feeling is gone these 2 days. My period was very regular before chemo, by my calculation, last week would be around day 14 onward in the cycle. So I hope that's all it is. Will pay more attention to it (or I already been paying too much attention??)
I'm checking to see if it is at all possible to "upgrade" my life insurance. need to do some reading...
Anyway... weather is nice & I am going for a long walk/ shopping.
getting out of the house & getting out of my head! Hope every one has a wonderful Valentine's weekend! 0 -
Hope you all enjoyed your weekends! I've finished 13/33 rads treatments & am doing well so far--only slight redness and a bit of dryness. Beautiful snow coming down outside & I'm ready to head back to the treatment center this afternoon. Hugs!
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I have my rads simulation tomorrow. I am not ready for this. Mentally, emotionally, or physically. My RO is supposed to check my incisions again to see if she thinks I can start next week.
My period came back with a vengence this weekend. Just as DH and I went out of town for a couple of days... First of all, it had only been three weeks, and second, I have NEVER bled like this. Soaking pads, leaking the bed twice in one night, getting heavier over the course of four days. It has been crazy and I am exhausted. Slept all day yesterday and most of the day today. It is finally lightening up. I wonder if my MO will still wait till rads are over to talk Tamox and OS. He wasn't expecting rads to be delayed this long or for my cycle to start back up so soon.
My breast is still tender from surgery--almost 10 weeks ago and I know I am sleeping funny because my back aches all the time. I suspect it is the drastic uneveness of the girls.
Despite all of that, I am doing okay. Hair is growing well, and I am more active in day to day stuff. The dizziness from chemo is all but gone--I no longer feel like a constant fall risk. Just wish I had some energy. And some brain power--that would be nice.
Herceptin later this week as well--other than a runny nose and weird intestinal issues--I can live my normal life with it. Surgery knonked me off my feet, but while I am nervous about rads I am not going down without a fight this time.0 -
I was also told my echo was normal and then I look at the report and see There is mild left ventricular hypertrophy. I look that up and
Never mentioned it to me and i am not sure its from the Herceptin. It may of been there before. So are they going to wait till its not mild to tell me and what can I be doing now to make it better or stop it... I will be asking. Rads are almost done, 5 more left, starting the boosters tomorrow and I am on my back out of the prone position which was pretty rough. Painful. I had not had any skin changes the entire time. Till last week, about Wed. (fifth week) then it all went to hell in a hand basket. Under the boob is raw and the skin broke. Hurts pretty bad. I never lotioned that area up because who would of thought it was part of the zapping. Under my arm pit is itcy and a little red but nothing comes close the the under boob... Hopefully these last ones won't agitate it much more. It hurts but its tolerable. The nip is bright red too and that happened friday last week. I still cannot feel that area well so it don't hurt but it looks painful lol red red red!!
Have my tami whatever prescription to take after radiation. I had a cardiologist tell me years ago I had the MTHR mutation so it raises my blood clot risk... Blood clots are one of my main medical paranoias. So that will be fun.
I feel like my entire body itches. The rash on my legs baffled the Oncologist. She said see my primary if it did not get better or go away. It got better now it seems to be going the other way. I also had itchy welts on the sides of my legs Sunday. I think I am allergic to something but no idea what. The only changes is having herceptin alone. I also am gluten free but went off the wagon there for a bit so maybe that?? I don't know no new detergents, soaps or food. I am not celiac but gluten makes my bones hurt. I know people don't believe in sensitivity but I know it messes with me... I have tested it many times lol!
So hope everyone is doing well... My hair is coming in but its about as fast as watching paint dry lol... It was the back then filling in the top. Its fun to rub
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