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Radiation recovery

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Comments

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017

    Awesome tribute for him Josie and well deserved.

    Diane

  • josie123
    josie123 Member Posts: 1,749
    edited November 2017

    Thanks everyone for your condolences

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited November 2017

    Josie, the funeral was a wonderful tribute to all he was, every part of him. I'm sure you are feeling the emptiness he left behind. Sending prayers and comfort.

  • josie123
    josie123 Member Posts: 1,749
    edited November 2017

    Thanks Brooksid

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017

    image

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017

    Pic of twins with theirnew dining table. Too cute!

    Went Christmas shopping with DS for them Friday afternoon. Found some Thomas the Tank playsets and Paw Patrol Toys. So got their Christmas done at least.

    DS had an interview Friday for a new job. Should find out today. Hope he gets it. More money of course and chance for advancement.

    It’s finally Fall like weather here. Leaves everywhere so I’m raking and blowing them it seems constantly. Talk about exercise in futility.

    Niece is getting married in Savannah next year. So far weddings have been in Chicago and Louisville. Love Savannah.

    Hope everyone is doing well. Meeting with my support group at church tomorrow night. Anxious to see how my friend is doing. She’s the one who is now Stage IV taking chemo drugs. She’s been out of town in Ohio for the past 6 months. Latest scan did not show remission which she abdcwd were hoping for.

    Diane

  • joan811
    joan811 Member Posts: 1,980
    edited November 2017

    Josie, I am so very sorry for your loss of your Father-in-law. My condolences to your husband and children as well. I remember when he became ill and how concerned you were. He did live out some good years and got to see his great-granddaughter. The services sound very moving and meaningful. It sounds like your Father-in-law was loved and respected by many.
    How is your daughter doing?

    Sew, I am so saddened to be reminded of the great loss by so many. To even imagine losing everything my family owned and worked for in an instant is beyond comprehension. The news that was sent across the country was so harrowing with tales of escape through walls of fire. I am grateful for you to have not been affected like so many. I cannot imagine how the area will recover with so many displaced families and businesses.

    I read the recent posts, and a lot of good advice has been given. I personally did not have long-lasting side effects. I do remember though as the swelling went down in the irradiated areas, I began to feel the tenderness of my scar tissue more acutely. The chemo decision was left up to me by my oncologist. I researched and agonized over the decision; but I decided not to take chemo. The statistics just were not that different. I was told I had to have radiation if I wanted a lumpectomy...it is the surgeon's insurance policy against stray cells.
    I do remember the boosts. These are concentrated beams of radiation and mine were done from the top of the breast down. I expected more skin damage; but it really did not get worse. I was healed about 2 weeks post-rads.

    Fran, I am shocked at your injuries after all you have been through. It is difficult to look ahead to retirement and realize things may be tight. I hope you can figure it out so that you will have quality of life and peace and a few choices like that trip you are missing. Most of all I wish you a speedy recovery from the fall and better health for you and DH.
    You are both hard workers...I hope this time of year allows you to rest a bit

    Diane, the kids are beautiful and growing up so fast! I know what you mean about the recurrences. I keep in touch with ladies from BCO and a number of them had recurrences and surgeries. It is the one thing that none of us ever wants to hear. I have 3 friends who are now Stage 4 and it is difficult to process. I know that I am only one stray cell away from that diagnosis. I cannot live in fear; but I do have to face reality that things do happen.

    I will try to not stay away so long! Work is long and I have a lot of grading and planning to do.
    Wishing the best for each person here.
    Joan811

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017

    So good to hear from you Joan. You write the best posts. No one is more organized in their thoughts and words than you.

    Thanks for the compliments about the twins. They are Nana’s pride and joy! I’m constantly amazed how they change from one week to the next. We don’t get to see them as often as we did so I cherish the time we have. X GFF has asked me to babysit a few times but I wasn’t able to. She usually asks the day before and usually it’s all day on Fridays but I plan ahead so I’m usually busy.

    I do try not to scare myself when a friend has a recurrence but it’s hard not to. We all know we aren’t promised to be cured. I’ve already lost 2 friends. It makes me feel like we are losing the battle instead of winning.

    Have a good week!

    Diane


  • josie123
    josie123 Member Posts: 1,749
    edited November 2017

    Diane, the twins are so cute. Thanks for sharing.

    Joan, so glad to hear from you. Thank you for the condolences. He was a very well loved man and he will be missed.

    I haven’t been on lately since I have been working as a temp full time at an OB dept in a hospital owned clinic setting. It’s going well and there is a opening as Medical Assistant in the position I’m working in

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017
    Thanks Josie crazy about those little guys!

    Good sounds like you have a job opportunity in the future. You always land on your feet.

    How is your daughter doing? When is her due date?

    Had a pre-Birthday dinner last night with DS and DH at a cool steak house. Pricey but hey I’m worth it! They even brought me a fabulous piece of chocolate birthday cake. Yum! Wednesday - actual birthday - brothers are taking me to lunch and 2 friends taking me after Thanksgiving. I won’t be able to eat for weeks with all these lunches. Got awesome framed pics of the twins from my DS and a beautiful birthstone necklace from DH. Even got a beautiful scarf from the dog! I am too blessed. I even bought myself a Notre Dame hoodie, orange jacket with hood from Talbots and Uggs shoes. Btw my birthday runs all month. Haha!

    Ordered a fried turkey from the Knights of Columbus at church. So good.

    Sister and BIL are coming in for Thanksgiving. 2 dinners on Thursday. Oh good more food. Annual football game with brothers, sons and friends Friday morning and then Sis and I are going shopping. Dinner Fri night with all the adults. Cool place on the town square so I’ll be fat and broke by week’s end!

    Happy pre-Thanksgiving everyone!

    Diane
  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    Leaving shortly for first RADS. Green tea ready to go. :) The day has arrived! Have a good one, all of you.

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited November 2017

    Josie, so glad you're working as a temp. I hope it turns out that you are the perfect fit for their opening.

    Diane, I'd just love someone to deliver a fried turkey to me! What a convenience! Our Knights are more comfy with pancake breakfasts and the annual St. Patrick's Day bash. Even if they could be persuaded, I'm in the sticks, about an hour away. Distances are so miserable that I don't currently have a home parish, but usually just watch the Diocesan Mass on TV.

    By now, Nancy, I imagine you are very happy to have your first treatment behind you. Did it go as you expected? I've been thinking you would have Thursday off, but I realize you're in Canada, so no rads holiday this week.

    I'll be staying with my youngest son in Connecticut, then riding (not driving!) down to Long Island where my oldest (mostly his wife) is hosting the holiday. Middle son will be having dinner with wife's family, then will come down either that night or Friday. I know I keep referring to my sons as though they were standalone persons, but they all have wives and children. Two have dogs and one five year-old is desperately "needing" a kitten.

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    BrooksideVT, So, I have had my first treatment. Not as fearful as I expected. BUT I have been told they would prefer no green tea, no cabbage leaves, no Aquaphor, no calendula cream, no aloe Vera.They told me the only thing they want me using is Glaxol or Lubriderm.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited November 2017

    Nancy53, I'm glad you're thru your first treatment, but I find their list of no-no's to be strange at best. Well actually I've never heard of green tea nor cabbage leaves, but the rest of the items most of us relied heavily upon. Were they, by any chance, saying no to these items just before your session each day? We weren't allowed to use anything within 4 hours of our session, but were able to use them immediately after. The science does become better and better with time though, and it's been 5 years since my rads, so perhaps there have been changes.

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    MostlySew, they don't want me using any of my choices at all during treatment or two weeks afterwards. Only Lubriderm or Glaxal. I found the following on another website:

    Hi everyone,
    I have breast cancer in right breast. Lumpectomy and 3 sentinal nodes removed on Jul 31st.
    I will be start radiation probably next month (Sept) so started looking into this topic. I wanted to do everything possible to prevent or treat side effects to the skin as a result of radiation.
    I came across this chat on breastcancer.org (US version of this site, I think)... I'm going to ask my RO before I use, but it seems to be highly recommended by users, with no apparent objections from their doctors or radiation oncologists. Let me know your thoughts, or if you get the "thumbs up"/"thumbs down" from your doctors to use.
    1) Green Tea: Preparation - Steep 2 tea bags of green tea in about 5oz of boiled water in a coffee mug. Steep for 30 minutes or longer - you want it good and strong. Squeeze out the bags and put the tea in a jar in the refrigerator overnight. For each day of treatment use some of the tea, 3 ziplock baggies, 3 cotton pads/squares for each baggie. (Use enough tea to thoroughly wet the cotton pads. Use pads/squares instead of cotton balls because they are larger and swab the area easier.)
    For each day of treatment you will "bathe" the area 3 times: (1) 3-4 hours before treatment; (2) right after treatment while still at the treatment centre in the change room; (3) later in the day/early evening. Here's how: rub the entire breast with the cotton, the arm pit area and chest up to collar bone - be sure to get under the breast too. Repeat this w/ the 2nd cotton square, then the 3rd cotton square. Bend at the waist and fan yourself dry then get dressed. All 3 times are very important, but using the tea as soon as you get off the rads table is thought to be the most important treatment of the 3. Do treatments on weekends as well. Make a fresh cup of tea every other day so that it stays fresh and strong.
    Another option is to put tea in a spray bottle (versus cotton pads and baggies).
    2) Emu Oil (pure). Massage in a generous amount at bedtime to keep skin from drying out.
    Aside from these 2 things, other recommendations included staying out of the sun. If you do go out, apply sunscreen under your clothes. Wear a crew-neck shirt (not tanks or V-necks). Keep up to the collarbone covered at all times while outside. Shower off if you get sweaty and don't expose yourself to heat (sun, hottubs, sauna, etc).


    The idea of the cabbage leaves is they mold to your breast and because they are cool, they will keep you from feeling the burning. I would be interested in your thoughts.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited November 2017

    Hi Nancy, if you really want my opinion it’s that I know nothing about homeopathic, holistic, aroma therapy nor much about alternative nor eastern medicine. I wouldnt trust them but that’s probably due to my own ignorance on the subject. I have heard good reviews from emu oil but did not use it myself. Calendula, and aloe I used myself. Staying out of the sun is good advice and sun screen after rads is good advice. I think you have to follow what your rads team says. There may be new evidence about creams since I had rads

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    Thanks, MostlySew. Staying out of the sun is never a problem for me. I get burned tooeasily. I will try to clarify tomorrow whether it was just before the session or altogether, but the impression I got was that the only things they would be happy with is the Lubriderm or Glaxal. If that is what to be, so be it, but I have had experiences with doctors didn't follow my progress, i.e., my diabetes and an episode last year where I was told my blood oxygen and iron were so low, they were surprised that I was "still standing". When I asked how long those results had been on my chart, they told me six months, so I was left feeling that someone missed something that led to be dealing with anemia longer than I should have. I am so thankful that I only have 15 more treatments, although we have already found out that the one on December 8th is being done on the 12th, because the machine is under maintenance that day.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited November 2017

    Nancy, yes, do check then follow what they say. If you have any skin issues, check with them at that point about remedies. On your date change from the 8th to the 12th, I’m glad they let you know early. I had an unexpected delay for a day because of burning and I was so depressed. I had marked my “finish”date at the start of rads and was set on it. You probably will be quite happy for the delay when it comes, as it’s quite nice to have a day off..

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017

    Brookside - our KC are very proactive. They sponsor lots of church activities and are always cooking for things like our Spring festival at the church. That’s a shame you don’t live closer to a parish.

    We figured your sons had significant others. I hope one day my son finds his soulmate. That’s great you can spend the holiday with them.

    Nancy - I was blessed I had no issue with Rads. My doctor gave me a silver cream that worked. I’ve never heard of drinking green tea or any of the other suggestions but it’s been 6 years since I had radiation treatments.

    Diane

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    MostlySew, yes, the 8th is at the end of my third week and I will be ready for a long weekend. When you said you used calendula and aloe yourself, do you mean you did those on your own, over what they recommended. And did you keep treating on the weekends? I see from your info you appear to be six years out from treatment. I am happy for you. Do you still take hormone therapy? That is out for me

  • MostlySew
    MostlySew Member Posts: 1,311
    edited November 2017

    Nancy, my docs knew I was using it, it was fine with them. Yes, I used the aloe about 4 times per day, then went to calendula (by Boiron) about 3 times per day until I had to go to prescription burn meds. Yes, I used on weekends too, especially to try to heal my skin before the Monday treatment. I ended up having to take a 1 day break 3 different times due to skin damage, but my case was unusual. I finished rads Nov 3 rd 5 years ago, yes, I was on an AI for 5 years. No problems with it that I couldn’t live with, as it were. Why no AI for you? Are you er/pr negative?

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    MostlySew, I am triple negative

  • Palene
    Palene Member Posts: 1
    edited November 2017

    Hi. I just finished radiation treatment one week ago. I have been very very tired and weak. It's not an all day thing but it has been the greater part of the day and it's been every day. Since radiation I have times where i feel pretty good, but more times for sure of generally icky almost as if I'm sickly. . I have times of depression as well. I try to stay positive but I seem to rock back and forth on that. During radiation and since completing it I have noticed that my urine smells foul. It's an odor unlike any I have ever had. Has anyone else had this problem? I will be seeing my doctor soon so I'm sure he'll run tests. As far as my skin goes I'm doing pretty good. I have some mild dryness but that's about it. I have used aloe topically (3x's daily) since starting radiation. At about mid way thru the treatment plan I began using aquaphor & silver sulfadiazine cream (mainly over surgical scar). I also drank aloe juice during the treatment time and have continued that. I did notice that even though there is not a problem with the skin itself, my breast (mainly nipple area) feels hard and thick. During treatment I had some sharp pains but nothing to bothersome. Since completing treatment the pains are stronger and more frequent. I'm so eager to get one more week down so I can start my regime of internal and external herbs, oils and some supplements. I feel a need to build my immune system back up. I know this is a long post but for people trying to find out if anyone is experiencing what they are, I thought it might possibly help someone.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited November 2017

    Palene, you sound like you're right on track for recovering from your rads. Remember your body has been thru a lot, it will take a bit to get back to what will be your new normal. The tired feeling will slowly fade away and soon you'll feel fine almost all the time. Your nerve endings that were damaged from both surgery and rads are starting to wake up and sometimes they scream in protest (at least mine did) but that too will fade away. I used to get very sharp, sudden pains where I would inadvertently grab my breast with a huge intake of breath it hurt so intensely. It always surprised me when it happened, but it stopped after a few weeks. Also, most of us found that we had a sort of PTSD reaction to being finished with active treatment, grief at our loss, pain, anger, depression, you name it. But you will deal with that also and it will fade over time. Just give your body time to adjust and heal. Right now I'd recommend lots of protein, some exercise but not strenuous, stay hydrated and eat a balanced, sugar free (if you're er/pr positive) diet with lots of veggies. Your summary will certainly be helpful to other women. As far as the urine smell, I didn't experience that, but I would ask if you've always been drinking Aloe? If not, perhaps it's your body sloughing that off.......

  • mistyeyes
    mistyeyes Member Posts: 581
    edited November 2017

    Palene, Mostly Sew - I had sharp pains shooting through my breast and my doctor said that it was good that was scar tissue breaking up. Sometimes my nipple area will feel thick and hard but most of the time it is normal, I feel it more right after I put lotion on. weird. Now my skin is itchy, but still sensitive and I don't want to scratch it, I just keep putting lotion on it.

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    Hi, everyone. I had my second rads today, and now they've backed off on what they said yesterday about Lubiderm and Glaxol only, and I can use my Calendula ointment after all. :). :

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    BrooksideVT, I noticed I missed one of your posts. I hope you have a great Thanksgiving. If all goes, treatment and weather-wise, we plan to cross into ND on Friday to check out the Black Friday deals. We got some good ones last year

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017

    Happy Thanksgiving everyone!

    Diane

  • 53nancy
    53nancy Member Posts: 295
    edited November 2017

    edwards750, have a great Thanksgiving

  • edwards750
    edwards750 Member Posts: 1,568
    edited November 2017

    I did Nancy thank you. Hope you did too.

    This has been a tough year health wise for my family. DH has Parkinson’s and now my sister’s BC has recurred. Not metastatic thankfully but a small tumor under her armpit where she had her MX. It was discovered last winter on a routine exam. She was 4 years out last year. She had it removed and 33 radiation treatments. The tumor board advised chemo but she declined because of kidney issues- she has 1 now so she has to have a shot once a month.

    I am stunned, sad and bummed out. She is frightened of course but staying positive and I will be that way for her. There are reasons to be.

    I can’t share this with family members because she asked me not to except for my husband.

    Praying for her to be okay. We had a great Thanksgiving with she and my BIL before she shared the news.

    Diane

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