MIDDLE-AGED WOMEN 40-60ish

Dianarose

Elimar- I hope your rads go quickly. I have 3 down and 25 to go. How many do you have to have? I am just really tired. I don't think I had enough time to recoupe from chemo, but I guess they don't want the cancer to recoupe either.

Eph- I had major lung issues about 5 months after I finished rads the 1st round. They got my lung and fluid built up between my lung and the scar tissue. It took about 3 months to get better. I sure hope that it doesn't happen this time. I go at 7:15 each morning so I can go straight to work afterwards.

Hope everyone has a great night.

LindaKR

Cindy - I was really glad that I had the stents put in my tear ducts - I couldn't see to drive, watch TV, look at the computer, read..... My vision was constantly blurred and distorted, and my eyes really burned and I ended up with a headache if I over did.  When they took the stents out 5 months Post Final Chemo, my tear ducts had healed and everything was fine.  One quick warning, you are pretty uncomfortable for about a day after they put them in, and not make up for a couple of weeks.  You're the only person I've heard of, other than me, to have this procedure done.

Beckers - I was in Portland last week too - there is a great Mastectomy/Compression garment store there - Just Like A Woman.  Also, I live in Oregon, the state of the medical marijuana card!!!

elimar86861

Interesting.  I hadn't heard about those tear duct stents before, but I have heard plenty of women complain about their eyes tearing up.  I wonder if that procedure is commonly done, because more could probably benefit from it.

Dianarose,  I am one ahead of you with 4 down, 24 to go.  I had heard I was getting 25x, but yesterday saw my chart with 3 boosts added on.  I believe I am getting the daily dose the same as I got for my breast, but since I did 33x on my breast I will end up having a slighly lower total radiation done on my pelvis.  (Someone send a memo to all my other organs in there, that they don't need to mutate any cells over this.)

Dechi,  Congrats!  Happy to hear they turned out well.  Do they give them a 3D effect?  I never inquired on that before.  It's a real question.

Cindyl

Linda, glad to know it helped. I'm hoping to get some relief.  The drops Doc gave me help some, but not as much as I'd like. Optomologist claims he has 3 or 4 patients right now that have tear duct problems that he believes are related to cancer treatments.  My Oncologists is all nah... can't be.

LindaKR

Cindy - funny my MO is the one that got me into an opthamologist right away when my eyes kept getting worse, it was the first opthamologist I saw that said nah...but I showed up prepared, with lots of official internet information, she must have looked at it after I left because she called me before I left town to head home and asked if I could come back later in the day, she had called around and had a list of things to try before the stents, none worked, the drops did nothing but burn, so she sent me to a different specialist that puts stents in, farther away of course - by the time I got in with him my tear ducts were starting to grow closed and he wasn't sure that he would be able to put in the temorary plastic stents, if not he was going to put in on of the glass ones (YUK), any way he did, left them in until my tear ducts healed and then pulled them out.  I only wish that I had done it sooner, but it was hard to get an appointment scheduled at the right time of the chemo cycle so there would be less chance of infection, as it was I topical and oral antibiotics, but no problems.  I could tell a big difference within about 4 -5 days.  When are you having it done?

Elimar - it's pretty uncommon, I do live in a relatively rural area, and had to go to a larger city to have this done, and they only see 1-2 a year from the cancer treatments.  They try steroid drops first to see if that will get the swelling down enough to keep them open, in my case it didn't - I was told by the doc that put in the stents that only 1-5% of people getting Taxotere need to see an eye doctor about it, and out of those only 1% or less need the stents.  It had to be me (and Cindy1)

Cindyl

And mine isn't even from taxoteir, but rather from tamoxifien. My appointment is in January. There is an out of state specialist who comes to town once a month.

LindaKR

Cindy - that's kind of cool that they come to your town.  I live in Oregon and there are only a couple in the state, luckily one was in the town where I was staying for my rads.  I guess that that makes sense about the tamoxifen since that and taxotere and taxol are kind of related.  I bet it's even more rare to get this issue from tamoxifen. 

elimar86861

LindaKR,  Related?  How so?

Question for chemo gals:  If any of you got a sore mouth (with or without actual mouth sores) did they persist the entire time you underwent chemo?   I just keep worsening, but I don't know if I can get better since my chemo is continuous.  They gave me oral lidocaine (helps a little before eating) and Aquaphor (which we all know from rads) to use on my lips.  My lips and mouth are splitting to the point of bleeding.  Everything in front of my throat feels braised, but amazingly my throat has not swollen yet.

I might get some more help from MO today, since I have to go in there anyway.  I think my port line has leaked a little and they told me to get in there is that happens.  I don't feel too bad, except for my mouth, but it has made me lose a couple pounds already and I don't carry any extra to spare.  (And, as the universe conspires against me, my cancer center just lost the underwriting for giving out that free Ensure.)  I ask myself how on Earth am I going to do this for 6 weeks?

Momine

Eli, what helped me during chemo (and after) was pro-biotics. I got a bit of fuzzy mouth, but no sores or great evils. I took 3 acidophilus capsules daily, one with each meal. The other thing that helped was rinsing my mouth with a bit of baking soda in a glass of water.

Dianarose

Eli- I used Biotene oral mouth rinse for dry mouth every day and rinsed with warm salt water each night. My last little sore went away about 2 weeks after chemo. The salt water seemed to work the best and they weren't bad. I hope you find something that helps.

barbe1958

elimar, you are going to do this with the same grace and wild humour that you have faced breast cancer with! We are survivors, an example to others of how beaten down someone can get and still keep on truckin`. Sometimes it`s exhausting being a survivor!!!! Hugs to you, sweetie!

LindaKR

Elimar - all three drugs are derived from the bark of the Pacific Yew - Taxol is made from the yew and the other two are synthesized, somehow - at least that's how I understand it.

I did have mouth sores, they weren't all the time, only after 1 treatment - my MO had me rinse my mouth several times a day (morning and before bed, as well as after meals) with a salt, soda water mixture, then I read somewhere on a Natural site to add a little Xylitol, as it changed the acidity of your mouth and helped keep bacteria from growing, it seemed to work really well for me. But they were never anything like you describe.  I also ate a lot of plain, organic yogurt and my chemo nurse felt that was probably one of the main reasons that I had little trouble with mouth sores, and interestingly, the month I did get the sores, I thought yogurt tasted disgusting, so hardly ate any.

elimar86861

LindaKR, I did know that the taxane chemos came from the yew.   Did not know it was the original source of Tamoxifen.  Ya learn something new everyday.

Thanks all for responses on "chemo mouth."  I have the salt/soda rinse going, also have the Biotene.  These help a little, not a lot.  I can easily try the probiotic/yogurt remedies over the weekend and see if that brings relief.  I kind of hoped that the CT reaction would just run it's course after the first peel, but now I think the chemo is just not letting me make any new mouth cells.  Even tho' I am getting a slow drip, it must be pretty effective because I am noticing a change in my bowel habits for the better.  The C/C was giving me IBS but now, in a few short days, it has settled down, so that's some progress.  I think it is a good sign that it is in there WORKING!

I need a focus group.   All who wish me well, who send a positive vibration my way or send up a prayer in my behalf, I can tell you all what I am striving for: Roughly 20% of people on this drug have a clinical Complete Response, (no cancer on exam or scan) and a slightly lower percentage actually have pathological Complete Response,(that is no cancer found when they do the surgical pathology.)  I WANT TO BE IN THAT 20%, at least.  It does not get you off the hook for having the surgery BUT if I have a complete response, I will have greater odds for a good outcome, lower chance to recur, and a better prognosis of a lengthier life.  I MAY AS WELL AIM HIGH.

p.s.  FYI, Even tho' I am Stage III now, it will be my Staging after the surgical pathology that will influence my prognosis.  How's THAT for suspense?

Anonymous

Eli: my prayers for you are focused on that 20% clinical complete response! Love you!

Momine

Complete response is a good thing. Will light a candle at the church of holy strength (that is really the name, used to be a temple to Heracles).

luvmygoats

Elimar - This may be more info than you need.  Embryologically the cells of the rectum and the mouth are very similar so I would suspect the same of mouth cells/colon cells.  I would try a dilute Maalox type rinse as well.  There is a concoction called "magic mouthwash" prescription that is Maalox, lidocaine and I forget what else.  Wikipedia says liquid Benadryl also for inflammation is in it.  Hope this helps some.  I would think the yogurt could help also.  Couldn't hurt the process, but might make mouth oweeis worse.  I would try the Maalox, maybe rinse with it/spit it out.  Don't want to interfere with your treatment regimen or the response your getting to the chemo.

Aiming high with you!

dechi

Eli - There is something out there called "magic mouthwash" that I hear is fantastic for mouth problems.  Ask your doc.  There are a few different formultations.  Link

Valjean

E ~~~ You know that I did not have chemo, therefore, I don't have any suggestions to help you with your SE's, but I do have this to offer. You are always in my prayers & I am sending out into the universe ALL the POSITIVE VIBES that I can.

And this Wolverine is fierce. So, beware, ALL negative thoughts out there.

Heed this warning:

Stay the hell away from E !!

elimar86861

You guys know your stuff!  After rads, I stopped back in to my MO's "chemo parlor" and they had a Magic Mouthwash Rx waiting for me, plus Nystatin rinse (I'm on the verge of going fungal, nurse said) and a 5-day oral anti-fungal.  My kitchen counter now has what looks like a pharmacy alcove in one corner.  The nurse said I should be able to clear up this mouth problem.  Other than that, this first week is o.k. so far.  Other than being a chemo novice and having a lot to learn, I can hancle it.

Unlike the breast, it's a bit more difficult to view your own butt, so I queried my rads tech whether my butt was showing any preliminary "rads tan?"  I know it's like asking him to stare at my butt, but since the answer came back negative I feel it was well worth it to ask.  My lotion of choice?  The WalMart 100% Aloe Gel that got me through B/C rads, of course.

This is Day 5 of my campaign to KILL CANCER and I think I can KILL IT REAL GOOD.  DIE, CANCER CELLS, DIE!!!

dechi

Awesome!

Eph3_12

You go girl!

Outdamnedspot

Elimar. You are amazing.

Cindyl

Linda, yeah, it is cool. The "lid specialists" apparently take turns coming to Rapid City, SD from Idaho. There are two of them and they trade of months, one is her for two or three days this month and the other comes the for two or three days the next months.  They are apparently busy enough that I couldn't get in in Nov. or Dec...

elimar86861

Outdamnedspot,  Not so much.  I just took notes the first time around.  Sorry to read of your premature pinkness over on our rads thread.  I really swear by the 100% Aloe Lotion, because it is non-greasy and I think it doesn't trap any heat in.  Also, when I used it for breast, I would go topless and let it air dry for the full cooling effect.  I put the lotion on right when I got home.  (I live only 10 min. from Cancer Ctr.)  In later weeks, I might use it a second or third time per day as needed.  I ended up a pinkish tan, and when it was finally over I peeled once, in a few patches, just like a typical sunburn would peel.

Momine

Death to the cancer cells!

The anti-fungals help, but treat the symptoms more than the underlying cause. The probiotics treat the cause, so both work better than either on its own.

elimar86861

Momine,  That makes perfect sense.  Of course a nurse could have told me that but never did.  No one from my "team" mentioned yogurt or probiotics.  Good thing I have my "BCO team" with so many helpful suggestions. 

luvmygoats

Elimar - I totally agree with Momine. Replenish the good stuff in your gut that chemo, the antifungal and any prior antibiotics have killed. I would clear any heavy duty probiotics other than yogurt/kefir with your doctor. I'd be real skittish recommending with chemo treating the colon.  Just my used to be professional opinion.  Hope your magic mouthwash gives you some relief this weekend.  Was the little dictator or your port leaking?

luvmygoats

I always tried to think of yogurt esp. for the female bits getting "angry" and ABT therapy.

elimar86861

goatsy,  That port leak was a false alarm.  It was secure.  I just did not know because I had a few "drops" of something on my shirt front.  Maybe drool from all the Cheetos talk yesterday.  (Oh no...don't you dare even think anything Lewinsky-ish!  After all I have said about my painful, sore mouth, that would NOT EVEN be a possibility!)

Momine

Uhm, dudette, you said Lewinsky, not I. But hey! if you wanna go there ... 

You probably should run the probiotics by the onc before going haywire, but as far as I know, it is OK. I became a believer when I had recurring yeast infections in youth. After endless rounds of the antifungals (nystatin and monistat are the same medications, just different orifices) and the stuff recurring like clockwork, I did 3 months of probiotics and never had a problem again.