2017 Diagnosed-- A Place To Share "Whats Next"
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Paulette, I was told I could only use Lubriderm or Base Glaxal (seems to be a standard in Canada) but when I took my Calendula ointment to show them, they did allow it. I have been using all three because I feel they will be more effective that way. They would not allow Aquaphor because it was vaseline based, nor Aloe Vera. I was told I could not lose weight and managed to gain only two pounds, but today they told me I must follow the high protein diet and maintain weight for another six weeks. Tonight I am beyond tired so will probably be resting a lot the next couple of weeks.
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Nancy - Aquaphor is such a rich cream which is good to use it at night. I saw many ladies use it also. I haven’t kept track my protein I’m happy I found the 20 G protein bar, that should help me to hit that target easier.
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Curious, ladies, about references to protein diet. In your case(s), who ordered it, and for what purpose?
I am generally a clean eater, and I have been working on pounding fluids -- something I haven't always been good about, but oh my am I thirsty these days (anyone else?) But I would be more intentional about adding protein, if someone had mentioned it.
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Wow...go away for a few days and this thread got ACTIVE!
For those who just finished RADS...congrats and hang in there! I'm now 3 weeks after my last session, and still have a little bit of peeling but continue to lotion up morning and evening just in case. Hard to believe how horrible and painful that breast was just 3 weeks ago.
We had a great time at Walt Disney World for the long weekend (Wed night through Sunday night) but now it's back to crazy reality. We are hosting a holiday party on Saturday at hour house, so went out Monday to get our tree and decorated last night. Still have the rest of the house to decorate (we did outside Mon and Tue night also) AND I need to decide on food for the party. I'm not done Christmas shopping and don't know if I'll get holiday cards out either but we'll see. For the most part our vacation was full of happy moments, but I admit there was a time where I just looked at my youngest son and started crying thinking that I may not be around long enough to see him grow up more. I hate that I go "there" at times, but I do. I feel like I've got this MAYBE 10 year lease remaining on my life now since my diagnosis and I'm just hoping to get there and enjoy what time I have left. I share this HERE because I know sharing it with anybody else, even my own family, would just make them feel sad for me. I don't want that.
My oncologist gave me tamoxifen but told me I could wait a while to take it, so I am thinking I might start next week. I just don't want to worry about side effects right now with so much to do, and I'm not fighting a cold also so that's not helping. For those taking this...any suggestions on when is best to take it? Night? Morning?
For anyone celebrating, Happy Hanukkah!
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Rhyfelwr, I was wondering about the protein too. My RO has said nothing about it. But since many of the ladies have mentioned it I am trying to add an egg each morning for breakfast and nuts for lunch and a lean protein for dinner. I believe they said protein helps with the fatigue but I am not sure about that.
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Paulette, my husband found a bread by Country Harvest which has 9 mg protein per slice; don't know if it is available in the U.S. My nutritionist is skeptical about it, so is going to check it out. I have some Vaseline Intensive Care that I will use up before trying the Aquaphor. What I am using mostly for the next two weeks will be the Calendula cream because I am so impressed with how it helped my skin.
Rhyfelwr and OCDAmy, my nutritionist told me that during radiation I needed to have my proteins between 78 and 90 g; it seems so much, but I think it really has helped with skin issues, which she said was the purpose of keeping it that high. She wants me to maintain it for the next six weeks, now that I am finished rads. She also said that doing a smoothie with protein powder once a day is good, but suggested I switch from Vegan Powder to Whey because the Whey will help to keep bones and muscles strong. I haven't had a chance to check it out yet. Also, because of my age (in my 60s) she says I should stay around 70 mg of protein all the time, so that might prove to be a challenge.
As to water, I have always used three to four litres a day, but I do believe it is good for the whole body. And yes, I do believe it helped with fatigue. There were some days that I went straight to bed when I got home, especially yesterday, but my husband and I shared the driving - I drove in to the city before treatments and he drove home. Today, I feel surprisingly good; I slept well and have already done my first half mile on the treadmill; will try to do half a mile after every meal and before bed for the next couple of weeks for two miles a day, then try to slowly work my way up to five. I want it to be a lifetime change, and of course, once winter is over, I will resume walking outside. No malls around here for me to go and walk around!0 -
Paulette, I haven’t seen any swelling, but today I did notice my skin is starting to peel. I can actually see my original skin color in spots. I did get all these teeny tiny black dots all over the boob about halfway through radiation which concerned me. I swear I thought there was hair growing out of them. I mentioned it to the nurse at the hospital and she said that’s normal. Sometimes the radiation makes follicles start to appear on the breast. They should go away as the burns start to fade. She said they call it Sasquatch Boob. I almost fell off my chair laughing. Now instead of the Noobie, I want to call it Squatchboob
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Congratulations sydsym. I'm beginning rads Jan 15. Just saw the RO today. Will do mapping in two weeks. Said by having rads lowers chance of recurrence in that area from30-less than 10% for the NXT 20 yrs! So that's some good news. Told me no loiltiins before and only lubriderm after. Pure aloe from plant is ok but they don't see difference. Deodorants ok.
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Rhyfelwr, high protein was recommended by my radiation oncologist to help with healing. I made the extra effort during rads but it was a struggle to find a balance. Eggs are great but higher in cholesterol, meat also great but not too much beef or pork, so many rules....
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illimae, wishing you well for maintaining protein. It is interesting that my nutritionist told me that I could eat up to six eggs a week. Because I am not a big meat eater, I grind flax and chia seeds and add them to my smoothies; they are both good sources of protein.
Tpralph, here in Manitoba they wouldn't let me use my Aloe Vera, but I have managed well with Lubriderm and Base Glaxol. They did allow me to also add Calendula ointment once I brought it in to them to look at.
catlady72, nice that you had a break and hope that everything goes well for you in your continuing journey.
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catlady72- your vacation to WDW sounds grand. Making memories is important to me since diagnosis
Hosting a Christmas party at your house!! Wow, you have more energy than I could muster right now. Good for you!
I have my tree up, gifts wrapped, and cards mailed. Oh, and put some lights up outside.
I am 2 weeks post rads and skin is healing nicely which is great after the crappy times from skin breaking down. I am still applying lotions twice a day but think all the new skin is getting stronger and stro
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Very happy to be reading about the protein now so I can prepare. I’m a vegetarian, but during chemo I’ve had to eat some meat - I just couldn’t keep up the protein numbers by just eating “high protein “ vegetarian options - the body absorbs more protein from meat.
My MO told me I could run as usual during chemo - fat chance. Now I’m being told I can run during rads, but I’m not sure how that will workout with a radiated boob. I guess I’ll see. Radiation isn’t until the new year, so I’m acting like it doesn’t exist.
If I get a Sasquatch boob, I will not be happy!
This weekend I’m starting the Christmas cookies.
Catlady72 - WDW is one of my favorite places! So many great memories Hope you had a blast!
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53nancy calundula cream? did u find it was better than the Lubriderm?
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Tpralph, there is Calendula Oil and Ointment; when they said I could use the ointment (bought at a Health Food Store) they specified NO oils. I like the ointment because it lays on the skin instead of totally absorbing, so I use it mostly at night, with an old tshirt over it. The Lubriderm and Base Glasal (I bought both; not expensive and can be found at Walmart) were so soothing on the skin right after radiation. I shower every morning to remove cream residue and did not put anything on my skin until after the treatment and then I just lathered it. I have been switching off between the two - one today, the other tomorrow, so to speak. Up until now, I have continued wearing a bra (got one size and one cup larger for the radiation course) and that has helped, but as of today I am braless and using a soft microfibre cloth between the breast and other areas of skin. Today, my skin is pinker than yesterday, and sore, but so far not itchy, but I am prepared for that. So sorry you have a month to wait for radiation, but sure hope it goes well for you.
DodgersGirl, did you have skin breakdown during rads, or afterwards? Yesterday, they told me they didn't think I would have a problem with skin breakdown, but I'm not so sure now. I am glad to hear that your skin is doing better now. Take care!
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VL22, I am chuckling a little bit to myself about the idea of running during rads. I have gotten to the point that I can't stand wearing a bra because of the tenderness from the burns. Had to rummage through my closet for something I could wear to work today which wouldn't show that I was going commando. I don't think I could manage running in this shape, even if I had the energy!
Thanks all for the explanation about the protein. I will work on making that more of a feature in my diet. I remember trying to eat 100g of protein a day when I was pregnant -- THAT was a challenge! I will probably just augment a bit, and do what I can.
Catlady72, so glad to hear that you are on the healing side of things. My RO nurse said things could get worse over the next couple weeks, and then things should get better, post rads. I figure I can do just about anything for two weeks, as long as I take it a day at a time.
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53nancy-- I had bolus with rads which is s designed to target the skin and not just to pass through like regular rads. My skin broke down a week before ending rads. Bolus was stopped as the purpose of bolus was to cause top layer of skin to die off, taking stray cancer cells with it. Mission accomplished. Tomorrow will be 2 weeks since I finished rads. Still have some tender new skin but nothing that bothers me. I can even sleep on the radiated side once again
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DodgersGirl, that is great. So good to hear, and I hope you continue to do well.❣
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Sydsym, thanks for the laugh about Squatchboob. My breast was always bigger than the other, but even more so now. I had heard radiation might shrink it. Sure hope so
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Has anyone had issues after getting their port removed? I got mine out 12 days ago. It is still bruised, swollen and it looks and feels like it is still under my skin. The area where it was feels like a knot almost and is tender to touch. Thought I would ask here before calling the surgeon. I should have just left the stupid thing in. It wasn't bothering me before.0
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Lego, mine still feels like there is something under there. I think it may be scar tissue but planned to ask my PS about it when I see her. Mine doesn't hurt but there is still a bump there. It is tender if I push on it.
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I thought I would join the party! I lurk more than post lately. I will be finished next week with radiation. I have the gene mutation for Lynch Syndrome (found out during genetic testing for breast cancer). I had my first colonoscopy at the age of 42 last week due to a higher risk for colon cancer (85% higher risk along with higher risk for other cancers). I had a polyp removed and found out today that it was cancerous. Luckily with it being found so early I don't have to do any surgery or treatment but I have to get another colonoscopy in three months. I went this year from being a healthy, 41 year old to having two cancers in one year. But I've learned to have patience, put down my walls, rethink what's most important to me right now, and mostly to just breathe and find something beautiful each day.
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Thanks OCDAmy. I'll just ride it out for a while.
Brneyegrl, I'm sorry about your polyp results. It is good that they got it early though. It has been a hell of a year, huh? I hope your radiation just finishes up and you can relax and enjoy the holidays a bit.0 -
catlady72 I take my Tamoxifen at night. My SE haven’t been terrible, but the night sweats are no fun. Those have finally calmed down (I’ve been on it for 2 months now). My MO also suggested that I take 2 Tums daily when I take my Tamoxifen. It helps with calcium and keeps me from feeling the nausea that I had at first. I think if your MO said you could wait then I would wait till after Christmas. Enjoy the holidays, then ramp up again. Best of luck to you as you join the Tamoxifen train
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Brneyegrl - welcome, sorry to hear that you found out your polyp turned out to be cancer. We are all here holding each other hands. We cried together and laugh together.
About protein, my RO told me just eat as usual. I’m not good consuming that much protein in one day, I’m eating egg for breakfast now, I eat lean meat for lunch and dinner, I got some salmon at lunch but I can’t eat that much yet, even my appetite is back 70% but I’m not a big eater so I can’t eat that much.
Swelling .... anyone has this problem??
Sasquatch boob 😂😂😂😂 I this is so funny!
DodgersGirl- I read about your radiation journey, it was pretty tough one you got, so glad you are feeling better now.
LEGO - I still have my port , I don’t think it will be out until I finished radiation.
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paulettek- thanks. I expected my rads journey to be harsher than most. Just glad the "bad" part was less than 2 werks
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Lego - I just had mine taken out a week ago. It feels okay now... I can tell there is a little scar tissue there. Sometimes you can get Seroma or Hematoma where the pocket was. If it is really bothering you (painful, etc.) I'd check with the surgeon just to be sure there isn't an infection or anything else going on.
I'm a week into Tamoxifen. Doing well. I did break out in a rash on my radiated area last night, and it's still here today. But, I think we'll get a handle on it. I'm using cortisone, and my RO prescribed a prescription strength steroid cream that I will pick up tomorrow morning. I think it's a mix of going to back to work full steam, stress and all, and the port removal with all of the bandages (tape causes me to itch). I haven't been giving myself enough down time, and stress is a big trigger of hives for me (as those who were on the July chemo board know!). So, today I came home, read the paper, went for a nice walk with DH and am doing some deep breathing, and the rash already feels better.
In a way, this crazy rash/hives stuff did one positive thing for me. I know IMMEDIATELY when I'm too stressed and not listening to my body and giving it what it needs. There is no gray area anymore. I am now forced to deal with it and get back on a healthy track!
Also, really hoping this isn't a long term SE of Tamoxifen. But, the fact that it is so localized to, mostly, the radiated area, is a good sign that it's just a good 'ol rash.
Tamoxifen, so far, is no problem, and I like that I can take it and feel okay. It is already like a security blanket for me, in a way. So... I'm hopeful that it will not be ruled as the culprit!
I hope everyone is well and enjoying the holidays, so far!
-LoJo
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LoJo, your thinking of Tamoxifen as a security blanket is a really helpful and positive one for me. I always dread the new and unknown, and that will help me move forward! Won't lie -- not looking forward to a new set of SEs and discomforts, but I suppose if I have made it this far, I can do the next thing too.
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Finished my RADs yesterday! Yay.....It was difficult for me, and my skin is bad, especially in the armpit. I have blisters, and tremendous pain. RO said the skin will take around 3 weeks to begin healing, fatigue will continue for a few months and that my skin will be sensitive to the sun and wind (? - really?) for a year. I keep telling myself it could have been worse....Really happy to be moving on. Hormone meds are my next step....seeing the Dr Jan 8th. Good luck to us all.
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tlfrank--- congrats on finishing!!
If you want to protect your tender new skin, I recommend applying a Tefla pad after applying lotion to protect that area as it heals.
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DodgersGirl - thank you for the recommendation, I will do that. What lotion do/did you find most helpful? I've got Aquaphor, Calendula, & Silvadene
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