Radiation recovery
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Sew - just recorded my video segment and texting to my love! LOL.
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Sew, thanks for the reminder about calamine lotion. It's helping today more than anything else. My scabs from the first generation of "bites" are coming off so it all looks a bit less dramatic today, but there are continuous lumps under the surface of the skin now as well as large raised areas. And I woke up with a cold, of all the little unfairnesses! The Zyrtec did help me sleep last night and gave me a detached feeling, as the NP predicted (she takes it for allergies), but I can't give it any credit for helping otherwise yet.
Cindy, that all sounds just exhausting! I hope you do get a break and can find a way to leave DH in good enough hands to feel comfortable about it. And I hope you get little breaks within every day, so important. He will have to learn to own it, unless he's not mentally with it enough, in which case I would say somebody ought to be hired in (pie in the sky maybe). Meanwhile I think maybe a hologram of you or a life-size cut-out plus the audio would be helpful!
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I posted about my rash, telling the story from the beginning, on the Bottle o' Tamoxifen thread and one person has already spoken up to say she's had itchy skin problems too, and her derm said estrogen protects the immune system and blocking it could trigger allergies. Also I'll repost what I just wrote there: Now I've been snooping around online a little more (which I probably should have done before posting, but I was curious about individual stories anyway) and I did find an older thread here on BCO from someone who got a rash after changing Tami manufacturers. I got a new bottle 3 1/2 weeks ago with a sticker saying it was a new manufacturer, but it was Teva now and Teva before, so I'm not sure what that meant, and anyway the itching started 5 weeks ago. I've also found this: "Some cancer treatments cause itching. This may be itching over the whole body (generalised itching) or just in one part of the body. You may also have a rash. Some treatments, such as hormone or biological therapies, can cause an itchy skin rash. This doesn’t necessarily mean that you are allergic to the treatment." http://www.cancerresearchuk.org/cancer-help/coping-with-cancer/coping-physically/skin/managing/dealing-with-itching and "skin rash" is listed among "rare" (<1%) side effects for Tamoxifen here: http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/tamoxifen?script=true It's just weird that it only started up after a couple of months on Tami, and has taken several forms that respond differently, and the leg part really seemed to start as bug bites.
Pretty interesting! I'll let you know what the MO says.
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Run Free, I'm not surprised that the rash, if related to Tamoxifin, would take 8 weeks to show up. I think I asked you a couple weeks ago if rash was a possible SE of Tamoxifin....and the reason I asked was because of a strange reaction I got to Prolia. Prolia is used for osteoporosis for women with cancer and is an infusion. You get an infusion every 6 months. 6 weeks after my second infusion I came down with the most spectacular skin rash. It looked like hives, poison oak, shingles, chicken pox, heat rash and in one area a bloody mess variously all over my body. Except my breast. None of these things showed up there. It had to have been the Prolia, but no one knows for sure. It slowly went away and took about 3 weeks. So.....from experience, I think a weird rash can just plain show up and attack you without rhyme or reason.
That said....what the heck will they do now about this? I think you should keep using the calamine as that might just be enough to convince your body to stop this foolishness.......0 -
RunFree- I wonder if your pharmacy might be at least willing to try another brand of Tamoxifen. I know I have had my BP pills changed a few times and at leats one had absolutely no effect on lowering my BP. Kinda scary as to what in the h--- it did have in it. Also must mention the other possibilities such as using a new laundry detergent or anything scented. Any new foods? I know my skin is very sensitive.
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Sew, I must not have been able to process your suggestion! It didn't really occur to me as a direct Tamoxifen side effect until yesterday. Now I've done still more scouting and I find that hives are a known thing, although rare so some MOs don't believe it, but derms do. I'm disappointed in myself--usually I'm immediately all over the internet with medical questions! Grammy, thanks for the example, and how strange that one would be inactive. I am going to take my Tami bottle to the pharmacy tomorrow and ask the pharmacist just what was the nature of the manufacturer change, so I have that info ready for the MO on Monday. My skin has never been sensitive. We did change detergents just before all this started, so that might have set off the reaction on my radiated skin, but we've now gone to an all eco one. Is is possible I'm reacting to the eco one now? If so it seems weird it would just affect my legs and be impervious to prednisone, but I'll mention it to the MO too. No new foods though. Even if this is an allergic reaction to Tamoxifen--which I suspect could require a longer vacation to determine--I'd want to look for a solution that would allow me to stay on Tami going forward if possible. A drug that keeps BC away AND helps me lose weight gently and painlessly? Perhaps too good to be true but I hope not.
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RunFree, you've been so patient, but this really isn't getting any better, is it? If you call your MO, RO, and/or PCP, maybe they will give you an email address so you can play show and tell with photos. Maybe then they'll be able to figure this out a little earlier than Monday, or at least have a dermatologist appointment already set up? Has anyone ruled out a fungus or icky parasite?
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Hmm, good point Brookside, because I think my MO did give me an email address. I will look for it. At least I could give her a heads-up about what I'm going to be talking about the most. The NP thought it didn't look fungal. Parasites are an interesting thought and I will certainly bring that up with the MO.
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Run free...it makes sense to me that it's only the lower legs. My worst Prolia reaction was my lower legs, and one was much worse than the other. I think it's because we've been shaving our legs for years....but I know that's really just silly. And yes, you could be allergic to the Eco soap, it could be a filler or something. It might be that you need to go back to your original soap. I think you're so sensitive now that anything could set it off. I just hope one of the doctors have something to get it under control....then you'll probably be fine.....once it calms down.......
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Runfree, all detective work and any ideas are good. I think that it would definitely be helpful to start emailing photos. I believe a diary/timeline might be helpful too since you've tried many things along the way. I hope that, like Sew's rash, it will resolve itself but you have to assume it will not and be organized for the MO. Sounds like you're all over that though.
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Very interesting Sew! In my case it's both lower and upper legs (and I've never shaved above the knee), though it stops about mid-calf. The more hivey/lumpy stuff is mainly on my upper right leg; the right has been consistently worse than the left. Wouldn't it be a hoot if the super eco pure detergent was bothering my legs and the normal detergent was bothering my radiated breast? I did better today thanks to the calamine, and you get points for that suggestion too. Brookside, I've failed so far to find my MO's email address but I haven't given up. Yard sale tomorrow, not quite ready but I think we'll have it together by 9. (There are no early birds because the town publishes a map and you can't buy it until 9.)
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Run Free....giggle giggle....cover your legs before trying to sell your clothing at the yard sale...else people will be turning their noses up once they see your scabby rashy legs. I had to actually miss the opening night of the symphony due to my rash. I could hide everything but my face! Sorry run free....I just couldn't resist......
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Yes, definitely a long pants day. Thank goodness it's a cool one. Best luck with the garage sale disappearing loads of once loved stuff. I can just imagine the parade to the dump once the event is over. Clever shoppers will probably be standing right there, collecting treasures while protecting cash flow.
Some folks "acquire" a doc's email address by searching the website for someone else's in the same organization (customer service and development/fundraising are easy targets). Usually some individual is listed, and you just follow the format (Perhaps it's a.smith, or alansmith, or alan.smith at wherever.).
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Brookside I hope you do well at your yard sale, and I hope you are feeling better.
Los Angeles is having a heat wave and it is supposed to last till Tuesday.This will make it a 3 week heat wave. It is very rough for me, because I can't go out in it.
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Good morning, Kate. Thanks for the well wishes, but it's RunFree who has the neighborhood yard sale. I certainly need one, but am horrified by the very thought of the work involved. I know I'd be happier afterwards, but have determined that, for now, I'm moderately happy just cruising along with all my stuff.
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Yes of course it is runfree, but I had a case of chemo brain
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RunFree good luck on the yard sale this weekend.
Ladies I am 3 weeks in to 6 weeks of Rad to right chest and feeling so lethargic. Last 2 days had some chest pressure feeling after treatment and a queazy stomach. ( this may be more the Tamoxifen effect on 1 month now) I have some burning but way less than I though I would at this stage. Can swallow OK but no appetite. I love how my MO just puts me on this stuff then does no follow up for weeks. I must call on Monday. It could be the T3 I am taking (3-4) a day for arm pain and neuropathy.
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Grammy, sorry to hear your having some fatigue and nausea.The tightness in your chest may be the skin and muscles tightening due to the radiation.But it's kind of concerning and should never be dismissed.You might want to call your doc and see what they say.I know you said its the right side being radiated though.Where is the chest tightness?Also could it be from the positioning.When I had shoulder problems I had chest tightness.All those muscles are connected.
I also experienced the nausea mostly on the weekends after a full week of Rads.When you do feel like eating try to load up on protein.Also Make sure your getting enough fluids.
Run Free, Good luck on the garage sale!! We are cleaning this weekend and plan to have one in October when it cools off.0 -
Kate, I am so sorry about the heat wave! Heat just knocks me down, especially when it goes on and on like that. Hope you're able to stay cool indoors until it breaks.
Brookside, that is a very clever way to get a doctor's email!
Grammy, it's good that your skin is holding up relatively well, but I do hope your doctor, either MO or RO, takes your tight-feeling chest and nausea seriously. The fatigue is pretty normal but hard to take too. I'm a little surprised you're doing Tamoxifen and rads at the same time. I agree on the protein and hydration. Also a friend told me miso soup is good for people during rads, if you could get your hands on some (so to speak).
My yard sale was pretty disappointing because the official map never really materialized, so not that many people found us. We sold maybe 20% of our stuff. I just wrote on the "Not quite a hoarder" thread about the minor trauma of taking a beloved family sofa to the dump after the sale--ouch. I did leave things more organized than they were, so whatever we do with our leftover stuff will be easier to do because of the sale. We made about $120, some of which goes to the kids from selling their things. And yes Sew, I definitely wore long pants!
My legs are looking a little less dramatic. Could be the calamine or the Zyrtec or both. They still itch though, especially at night when I'm just lying still. They need to look bad enough on Monday for my MO to get the picture! It's kind of like how your car stops making the funny noise when you take it to a mechanic. Also, I checked with my pharmacist, who said I did NOT get a new brand of Tamoxifen actually. But from what I've now read, skin reactions can appear well after starting Tami.
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Kate - I heard you were having 100 temps. This has been a strange summer. For us not as hot as wet. Lets hope next year is better. I always loved summer. Not this year. I am almost happy to see fall coming. It must be very hard for you to stay inside. I know it helps with the thoughts to get out. That is one of my biggest issues.
RunFree - Keep using the calamine lotion. The clear worked for me but I did use the pink a few days.
Brookside - You did have an awful day. Both you ansd Josie. I think it was Josie that had that awful day too. Sometimes it just does not pay to get up.
My day has been rather icky. I ate a meal with too much creme for lunch. It bothered my lactose intolerant tummy. So I drank some water to help rinse it down. Dumb idea because I have been running to the bathroom all day. Everything I put in my stomach bubbles and grumbles. I hate when it gets like this. Usually takes a few days of bland eating to settle it down. Can not wait to go to the gastro end of this month. Something wicked this way comes.
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RunFree I am so sorry about the ongoing battle with this rash. By now you are probably at the end of your rope. Tie another big knot in it and hang on. Hopefully it will calm down after it runs its course. I know it has been a long battle but it has to get better. Let me know your favorite cake ball flavor. I can do anything. How about butter rum cake mixed with vanilla cream cheese frosting and dipped in white chocolate? I can do anything so let me know. Sending big hugs your way and loads of happy healing ahead for you. I sure hope your MO will have some answers and suggestions for clearing it up. Sorry to hear the garage sale wasn't as busy as you anticipated. They sure are a lot of work. We had one in June and it was exhausting!
GrammyR I had some issues during rads with chest pain. I had some of the pressure you have, but my RO assured me this is normal. Then one Saturday morning, about 4 weeks in, I had very severe and scary chest pains. I went to the ER and they ran a lot of cardiac tests, all normal. They determined that it definitely was not my heart. After a day of tests all they could say was they were fairly sure I had either Costcochondritis or Pleursy. They said it could definitely be related to rads. Of course when I told my RO this he told me that rads could NOT be the culprit, insisted that whatever it was it had nothing to do with rads. Wow. He basically blew it off. I had another 'attack' 10 days later and I just laid down and waited for it to pass. Since then the pain has recurred and I had a complete cardio workup. My heart is fine, which is great news, but the pain is still a bit of a mystery. I hope your skin continues to do so well. We always seem to read all the bad news, but seriously, many people sail through rads with very few complications. I hope you are one of them!
Bunkie I am sorry you are struggling now with a bad tummy. My scope a few months back revealed a hiatal hernia. I take a new medication and so far my stomach has been much less fussy. I sure hope you get good news when you see your gastro later this month.
Josie sorry for your bad day. You need a happy fun day. Wishing that for you!
Kate I can sure relate to that nasty heat. I would be hibernating too. Summer refuses to let go here, but we have had a short break the past few days, staying in the 80's. The 90's return later this week.
Joan I think of you and hope you are doing well. I am wrapping you in big soft hugs.
Sew, I had no idea you experienced that rash from the Prolia. Hmmmm, sure sounds miserable. You are so quiet when these things happen. You are a very strong lady my friend. I hope you are well. Hugs!
Of course I forget half of you please don't take it personally. All of you ladies are in my thoughts daily. We have traveled a long road together. How special is that?
Healing hugs and love to all.
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Runfree, I am sorry your yard sale didn't go well. I hope you are feeling better.
Bunkie I hope you are feeling better. Finally it was only 71 in Santa Monica yesterday, and I went out
Janis sorry you are experiencing heat too. It is cooler here for the next few day, but it will heat up again this weekend.
I have chemo this morning 15 out of 18. As I mentioned I do not want to do the last three treatments, and I am hoping doc will agree to cancel them. If you remember in the beginning he said only 12 treatments, and then he added another 6. I know these last three treatments aren't absolutely necessary, but he wants them for added protection. I am going to email him today and tell him I want to cancel the last three treatments. He probably will tell me not to cancel till I see him on the 20th. I have my second opinion urology appointment next Monday.
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My blood counts were low today, so my doctor canceled my chemo treatment YEAH
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Kate hang in there my rebel friend! At least hear the doc out before making decisions.
Janis I think you should open a bakery or find a store that wants to feature your goodies. Travel money!
Runfree hope the rash is under control.
Josie and Brookside hope you are having extra good day today to make up for yesterday!
Joan you holding up ok? How did your semester start?
Finally agreed on a salary and ready to start at the university on Thursday morning. Life will surely be changing.0 -
Kate, I am happy/sad about your cancelled chemo: Happy for you, because you now have a wonderful little chemo vacation, but sad, because the little uglies have a vacation too. I hope the weather cooperates and you can get out and have oodles of fun.
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Sab...congrats.....did you buy new batteries for your alarm clock? You need then now.....or perhaps I shouldn't remind you. Tehehe
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Kate, congrats on the chemo vacation and cooler weather (for a short time anyway). But yeah, what Brookside said about wanting to clobber those nasty buggers if at all possible. I'm sure the second opinion urologist visit is one you're waiting for on pins and needles.
SAB, big congrats on the formal job acceptance! That is so great. I hope the job is everything you need and want it to be.
So I saw my MO today for my three-month check. She did a thorough manual exam and everything felt great, and she told me the returned sore spot on my back is muscular and didn't sound like a bone thing. She recommended I go back to PT and offered a referral if I need one, just because she's a big fan of keeping the PT going every so often as a tune-up. Most of all, she was fascinated by my skin problems. She found a few little patches of weirdness I didn't even know about. She thought it didn't look like a drug rash because those are "truncal," but she didn't know what it was. So she pulled some strings and got me into a derm appointment this very afternoon! We had to wait a few hours and it precipitated a frantic pickup problem for our younger kid, back home 90 minutes away, but we eventually found someone to pick him up. Then the derm was running behind and he only spent about six minutes with me. However, while he didn't know exactly what was going on, he had a much better immediate sense of it than my NP did. He tested me for scabies--was it you, Sew, or GigiL who suggested that? He said scabies can look like other things and "they love the areola" (yuck!). But it was negative. He is mainly suspicious of the Tamoxifen because of the radiation recall dermatitis I had on my breast, and he said Tamoxifen can be an agent for that, although he agrees it's odd that the skin on my legs is freaking out in a very different way. He thinks that whatever started it, it's now morphed into folliculitis with staph (yuck again!), which he said would predictably get worse on steroids. I'm going to try antibiotics and a prescription wash and antibiotic soap for a week, and if it isn't gradually but clearly getting better, we'll biopsy it and take another look at the Tamoxifen interaction. I forgot to ask whether I should stop taking Zyrtec. But he said that even if this is some multi-faceted reaction to Tamoxifen, that doesn't necessarily mean I have to go off it, because drug reactions can go away again.
Janis, I honestly believe you could not make a cake ball I wouldn't like! Butter rum with vanilla cream cheese dipped in white chocolate sounds VERY delicious. My husband and I spent some time walking around waiting for the derm appointment in the town where my MO is, and we found a cute bakery and got half a dozen apple cider donuts that were just lovely. (Yes, some of the donuts survived the afternoon!) The derm asked if I was sensitive to gluten and I said no really fast. Would I give up gluten if it meant no itching? Very tough call.
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Justmejanis- thanks for listening to my gripes. The pain seem to have now lodged itself over my gall bladder/liver area so after a lot of Dr calling I am finally getting lab and exam tomorrow. I told NP today and she did not even examine me. ( Not rads related-sound familiar !) I have had loads of gallstones for years so thats my bet. Just not good timing.
Bunkie- Have you tried Almond Milk. It has all the good things w/out the fat , lactose and hormones. Just a thought.
KateHudson- glad you got a day reprieve. Even though they may tag another dose on to the end it at least gives u a short break. My WBC was low between every dose and I had terrible reaction to the Neulasta. Ended up being admitted to hosp for a few days w/high fever and wbc at or near zero ( on Neupogen). So it had to be back to the Neulaste and the bone pain. Hang in there - a year from now this will be a distant memory- light at the end of the tunnel. Hugs.
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YEAH for you Run free,I'm so glad you got to see a dermatologist todAy.That's wonderful news!! Glad dit wasn't scabies.But I hope he finds the culprit soon so you get some relief.
Kate I'm glad you got that little break from Chemo today sounds like your body needed the break..
Grammy sorry to hear it might be gallstones I sure hope not.
BUNKIE I hope your tummy is better.
Janis I hope you saved me some cake balls.
My friend that went on Hospice last week isn't doing great .
I finally got out there to see her yesterday.How sad was that.I think it was the hardest thing I've ever done.I didn't know she would be laying there on the floor sound asleep gurgling and struggling to breath.Mind you she was on her normal oxygen.I couldn't believe it.Her son was trying to care for her the best that he knew how.He is legally blind and has his 10 yr daughter there to.They only have Hospice for her during the week.I wanted to try and help but he was so exhausted I just thought I wouldn't stay to long.
H e told me she was awake all night begging him to help her.
She is on Ativan and Morphine and that's why she was so out of it.It was just terrible.I don't want to remember her like that.I was kind of mad that she just gave up like that she's only 54 yrs old but I guess I just didn't want to let her go.I know that was selfish.She had pneumonia and the antibiotics weren't working anymore.All I can do is just pray that Jesus is wrapping his arms around her and will carry her up when it's time.
Sorry I hope Didn't make anyone sad.0 -
Oh Josie, it's making me sad, but that's as it should be because it's an incredibly sad situation. How terrible for everyone. Was pneumonia the original problem? Does her son have anyone else to help, I mean like siblings or a dad? I don't wonder you're angry. But it sounds as if she's been fighting so hard, and the nicest thing you could do for her would be to tell her, in person or not, that it's OK to go if she has to. Sorry if that's not applicable--I'm flashing onto someone I had to let go a long time ago. I think you can tell her that and mean it, but still listen to the anger you have, because that anger sounds very natural to me. This is just terribly hard.
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