Illinois ladies facing bc
Comments
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Mimi 55, aren't those firsts wonderful. I loved getting my hair back ( who wouldn't ) and couldn't believe how little time it took for me to start complaining about how thin and fine ( it always was from childhood on ) and hard to manage it could be. You sort of think after not having any hair for awhile......that you don't or won't allow yourself to HAVE bad hair days ever again. Well, that's what I thought once upon a time.
Well, its ok --- I hoped for mahogany red hair, full and curly when my hair came back but it just came back in the same mousy ( each time something has happened to me my hair actually darkened -- as a kid I was dishwater blonde ) brown, as thin and fine as ever. As I sill don't have all that much for gray hair ( I'm 68 so it will come ) I keep getting perms to have some body and style. I was told coloring your hair adds some good body as well, but I don't have enough gray.....but would have to have 'root' coloring in-between dye jobs, so just don't want to start that. I may never. I've known a number of people who had such beautiful silver gray hair.....so when it gets "there" I just might like it and keep it.
Hope you all have a stunning day.
Jackie
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Ok...seriously...WTH with the acne ....I will take any hints/advice/recommendations!!!! I have to go to work !!!
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Anyone ever have tumor markers rise during chemo? Mine went from 30 to 50.
She wants a ct scan.
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No, but then these tests can give a false read -- going up when they actually haven't. A lot of the Docs won't do them for that reason....it can be an anxiety producer. In your case....I would presume that they would re-do the test while checking other "possibilities" for the 'rise'. I would be concerned. Anytime you have a disease like this one, I would be concerned. Hard not to have your mind going to places un-wanted though.
Hoping that it is just some anomaly that will 'right' itself.
Blessings
Jackie
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Timbuktu my MO won't do tumor markers because they are so unreliable.
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MY breast onco doesn't do them either, and when i told the nurse this she said they don't usually either. Maybe they just really want that ct scan? I think I remember them mentioning tumor markers at Sloan. No one "knows". they are all giving opinions.
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Timbuktu...My onc does do the tumor markers but I never had them during the chemo. I would think that they wouldn't be very accurate during chemo when your body is going through so many changes and stresses. Hugs to you as I know this has to be worrisome for you. When are you doing the ct scan?
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Thanks Rita. I'm trying not to worry too much as they said they have tumor markers that gointo the thousands and a jump of 20 is not very much. But she wanted a baseline ct scan since the beginning so I'm hoping this is just a way to check things out.
Still, the way things have been going for me, it seems whatever can go wrong does.
I need the scan within the next 3 weeks, before the next infusion.
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Timbuktu, I hope it is nothing and things start getting better for you! Hugs!! I don't know what my doctor does re tumor markers....I don't even know what happens now that I'm done with chemo....(other than eventually AIs.). She never tells me until it's time to do the thing or I find out enough here to ask the questions.
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That’s what we’re here for: to
make the world new. We know what to
do: seek justice, love mercy, walk
humbly, treat every person as if he or she were yourself. These are not complicated instructions. It’s much harder to decipher the instructions
for putting together a tricycle than it is to understand these.
Nancy Mairs0 -
Last rads today---after a horrible burn on Friday, dr. woodhouse spent an hour with me talking me off the ledge of skipping the last two treatments......I took the treatment yesterday and it pushed me back to a little worse than Friday and I have to get one today on top of it.......she would not allow a skip in between. She promises me I won't believe how fast my skin recovers after I stop treatment....My next door a neighbor who is a retired nurse and a second mom to me went with me, and she was very impressed and told me I had a wonderful doctor. This much I know---it pays to surround yourself with the best people you can. (she better not be fibbing about the skin recovery time, though). Will it look worse before it gets better? I am a deep red, but no peeling. lot of pain under arm.
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redheaded1 - I had very similar rads results at the end - it was if someone left a hot curling iron under my armpit. My RO gave me a prescription for lidocaine that I mixed with Aquaphor. This helped immensely & I healed pretty quickly. I was surprised it wasn't worse considering that I am fair skinned & tend to get sunburned but never tanned (the Irish side definitely beat the Italian side in me).
Good luck & congrats on being done!
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Good morning, Ladies. Although I have moved to Arizona, I still try to check in here from time to time. So many new faces since I left the area! It is wonderful to see that the great support and soft shoulders are there now as they were for me. There is nothing more comforting in this journey than to know that you have other thrivers and survivors to count on when the going gets tough.
On the current issue, I will just throw in my 2 cents. My former ONC in IL insisted and my new ONC here insists on tumor marker tests. My new ONC here said that she has seen them pay off and prefers to see them as a "smoke signal". She also insists on Vit D tests at every visit. I always had to remind my former ONC that I wanted that done and often times, they would still forget.
I am a little unhappy about the new "standard of care" calling for 10 years on the AI's. Both of my ONCs agreed on that issue. Not sure that I can make it that long feeling like a 90 year old woman. Of course, I didn't help matters when I fell and broke my collar bone and sustained a significant shoulder injury a couple months ago. That has grounded me from my usual activity routine to help keep these joints moving. I am almost done with PT and looking forward to getting back on the move.
Since we still have a house for sale in IL, I will probably be back in the Chicago area a couple times this summer. When I figure out when that will be, I want to schedule a follow-up visit with my PS at Northwestern. Hopefully, I can also manage to meet up with a few of you also. Miss your smiles and humor.
Thinking of all of you that are going through treatment at this time. I am sure that you have heard enough "hang in there". That is what you need to do. It is all about you now. Take care everyone.
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Redheaded1... Hang in there ....think of it this way, YOU MADE IT!!! I know there are special dressings that you can get that are a cooling type gel...FIL had them with throat cancer rads burns. I would ask about those.
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Readheaded1-You will be amazed at how quickly your skin heals, don't freak out if it gets worse before it gets better....but it really doesn't take long for it to heal now that treatment is done. Enjoy the time back in your days now-you won't know what to do with yourself
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Joan, what a delight to see you here. You give wonderful advice too. Wow !!!! My Dr. chose not to leave me on the ( as Lago calls it ) estrogen-sucking drug any longer than my five yrs. I was torn about it a bit. It is/was a safety net and you know from the first.....you always feel better when you are physically ( or so it seems ) helping attack and rid your body of any thing dead or alive that corresponds to cancer.
I did however; realize very late -- probably the last 6 months I was taking Anastrozole that my even, cheerful temperament had absconded ( who knows just when ) and I was desperately tired of watching out that I did not fly off the handle at in-opportune times with people who would not have understood. So, rather than "fight" to stay on it, I gave in. I wanted the ( little bit nicer ) me back that was there all my life.
It is true that your skin will heal fairly quickly. You might use some of your cream/lotions -- whatever you have for a few weeks after, just to make sure your skin stays good and hydrated. It is a real relief when you are done. I had 7 wks. of rads.....the entire last week was boosts, and I'm pretty fair-skinned. Got a wee little bit toasty, but over-all, I thought the healing went fast. I did use extra cream for about 4 or 5 wks. afterwards.
Blessings
Jackie
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Yippee, done, they even gave me a diploma..........
Not sure why they don't seem willing to do much other that suggest over the counter stuff. But, the aloe cools me down, and the Benadryl stops the itch and the left over Vicodin from a while back will help with the pain. And t onight---a full frontal shower without worrying about stickers coming off........
It will be a relief to sleep I tomorrow instead of getting up early enough to saline soak and lotion up before my 4 hour limit is up...... I confessed to my nurse and Ro that there is some separation anxiety to be sure--- I knew someone was looking out for me every week.....I go back to see myRO for my follow up Jun 18.
So much gratitude to all of you for your advise and past experiences and your encouragement......Nobody really understands till they've been there.....
Now, to try to get back the person I was before the C entered my life----I feel like I don't know this me, and I wan t the old one back.......
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Hi Joan,
We miss you. I suspect you enjoyed AZ a bit more than you would have tolerated IL this winter. You picked a good time to move. Sorry about your shoulder.
I don't think the verdict is in yet as to how long to take AIs beyond 5 years. Research has shown that tamoxifen benefits are extended ten years out. I suspect some MOs are suggesting 5 yrs more years AIs because it's a logical conclusion after the tamoxifen research findings, though still not proven by research. With your nodal involvement I can see why the MOs are suggesting this to you.
Redheaded1,
I was so glad to go to boosts because my armpit was sooo painful. My RO refused to let me use anything but corn starch. He was old school. A week after my last boost, my areola became one large blister, but didn't burst. After that everything calmed down. Things will get better soon.
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My understanding was Als work a little better than tamoxifen because distant recurrence, if happens is much later. Staying on Tamoxifen for 5 extra years give protection longer.
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Ok...here I am day 4...my mouth feels weird, my skin is a mess and my scalp is tingling... My tongue feels like it has a sock on!!! Nothing tastes right !!! BUT...bright side, very minimal nausea!!! I will take it!!! Hopefully, if all goes as planned this Lake girl will get some lake time this weekend!!! I earned it!!!
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You go Lakegirl! Us IL girls can dig deep and we are right here with you!
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Lakegirl....go to Walgreen's and buy some of the old fashioned lemon drops with the sugar on the outside. This will help with the taste issue and also helps with any nausea if it ever hits. So glad you are going to get out some this weekend.
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Ritajean....thanks for the lemon drop tip....that will be good to have for the car ride, 6 hrs to Lake of the
Ozarks!!!
Teachermom4...hope you get out some this weekend to!!! Soak up a little sunshine it does us all good!!
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Lakegirl1 If your tongue feels furry and maybe white on it do not do the lemon drops or anything with sugar. You may have thrush. Call your MO and get the magic mouthwash.
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Imagine how our lives might be if everyone had a bit more of the Wisdom
that comes from seeing clearly. Suppose
people everywhere, simultaneously, stopped what they were doing and paid
attention for only as long as it took to recognize their shared humanity. Surely the heartbreak of the world’s pain,
visible to all, would convert everyone to kindness. What a gift that would be.
Sylvia Boorstein0 -
Lakegirl, yes, get the magic mouthwash. It tastes awful but it really works! I'm taking it right now. Be aware, however, in my case my insurance wouldn't cover it and it was $75 a bottle. It did, however, cover pure nystatin (rystantin?) can't remember--which is the main ingredient in magic mouthwash and which I was prescribed first.
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I think if you HAVE thrush for sure, your Oncologist will prescribe MM. I had thrush. It was not in my mouth. It started in my lower esophagus and was moving upwards. Not only strange feeling mouth.....but no taste, impossible to eat.....and along about 4 p.m. after a long day of fighting nausea ( from the thrush ) I would start to throw up stomach bile. This happened for some time -- maybe a bit over a week since it was more subtle at first, but I ended up with an overnight stay in the hospital to get a solid diagnosis.
Anything is possible here, but just remember that we all react somewhat differently to txs -- even if they are exactly what others are getting. I had A/C -- Adriamycin and Cytoxin -- 4 rds. -- each 3 wks. apart, and then Taxotere --- 4 rds. exactly the same. My thrush came after the first Taxotere.
See your Oncologist. Thrush usually turns up in the mouth....but may not.
Otherwise, if just your own personal normal ( if anything is normal at a time like this ) reactions -- hopefully you will get a lot of good suggestions for things that will help with the mouth/flavor issues. I ate Luigi's lemon ices and that did the trick for me.
I might add.....I had to have about 4 btls. of the MM to entirely eliminate the thrush. Got to where I almost liked the stuff. If you suspect you have thrush....get a new toothbrush. The microbes will flourish in your brush.
Blessings
Jackie
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Lake girl, take care----stay in contact with Dr. Migas about this. Your allergic reaction scared me, and that included a tongue symptom. Be careful in the sun.Keep us posted.
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Redhead Thrush is just a yeast infection in your mouth/esophagus. Not serious but needs to be treated. It happens to many on chemo. I thought for sure I would get one but I also eat/ate yogurt daily and lots of garlic. Yeast loves suger though.
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Lakegirl,
I used Biotene mouthwash which is OTC and maybe 2x cost of regular mouthwash. I had no trouble with either thrush or mouth sores, another common problem with chemo. Chemo kills cells that reproduce quickly. Cells in the mouth do that, so that's why using special mouthwashes are really important.
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