January 2016 Chemo!

Options
1…4950525455…86

Comments

  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    imageMiss Bee... I'm adding a photo to join LoveMyVizsla. Hope it helps you think good thoughts.

    · Share on FacebookShare on Twitter
  • Myraknits
    Myraknits Member Posts: 264
    edited March 2016

    Miss Bee, sending you a double rainbow and a hug.

    image

    · Share on FacebookShare on Twitter
  • kellychameleon
    kellychameleon Member Posts: 100
    edited March 2016

    Sheri64, ugh, I certainly hope it's not thrush. I don't see any white, so I'm thinking I'm in the clear for that.

    Wendi - Super cute hat.

    Quixhobbit - Love your wigs! I seriously wish I could rock all of the colors - there was a time when I could, but in my stuffy profession as an insurance agent, I would be a little out of place!

    MissBee - I'm so sorry for the frustrating news.

    I'm still fighting this stupid cold and am feeling pretty exhausted. My husband and I have tickets to a Stars (hockey) game tonight that were given to me by a vendor, and while I'm looking forward to it and have babysitting lined up (yay!), I really would rather curl up in bed. I'm just going to chug a big coffee after work and hope for the best.

    · Share on FacebookShare on Twitter
  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited March 2016

    Thanks for all the sweet words, ladies. Made my day.

    MissBee - hugs and positive thoughts your way.

    I am also having Pavlovian responses to certain things chemo related. I've been sucking on ice during Taxotere but couldn't do it the whole time yesterday. Just the thought of it made me nauseous. And it's just ice for goodness sake. I also got nauseous the minute I sat down in the dreaded chemo chair. Each infusion day is about eight hours for me so I have to really mentally gear up for it.

    Hang in there all you beautiful warriors!

    · Share on FacebookShare on Twitter
  • fightergirl711
    fightergirl711 Member Posts: 300
    edited March 2016

    MissBee, I am devastated to hear this, I am so sorry. Did your oncologist just not see this initially? Is there another opinion to consider? This is the first time I've heard of genetic testing outcomes impacting radiation treatment. Is this a common thing? I'm sure you have asked all these questions - please don't feel like you need to respond here, but fwiw, I just emailed my oncologist some of these questions, also to see if my "inconclusive" variant of RAD51 falls under this category too. I'll let you know what she says about RAD50, if it helps at all.

    · Share on FacebookShare on Twitter
  • Maya15
    Maya15 Member Posts: 323
    edited March 2016

    MissBee sorry to hear your news. How did you find out about the RAD50? Is it part of the genetic testing?

    Taxol is kicking my butt, felt totally exhausted all week. Went for #3 today. When I told my oncologist I've been having palpitations for the last 2 days, they did an EKG. Nothing serious, but I have "extra" heart beats, so they withheld the Herceptin and just gave me Taxol till I get checked out by a cardiologist (before the next chemo). Also they cut out all the pre-meds because they don't give them at my hospital if you do fine with the first two treatments. So no steroid high for me this week..

    · Share on FacebookShare on Twitter
  • Veronica31
    Veronica31 Member Posts: 97
    edited March 2016

    Cathytoo: Thanks for the stories! My dad also made sure that I knew that he had a friend who was diagnosed stage IV at 34 years old. She's now in her seventies and still alive and doing wel. If that's not hope, I don't know what is!

    · Share on FacebookShare on Twitter
  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    Veronica31...for every bad story there are at least two good stories (maybe more!) We just have to think of the good ones

    · Share on FacebookShare on Twitter
  • Geeper
    Geeper Member Posts: 164
    edited March 2016

    DFWFLYGIRL: My infusion center is great, the staff is lovely and they are all about comfort. I think it is beneficial to the mind, body, and soul. I am having a better week mentally but physically ugghh. The fatigue is getting to me. I've been so tired lately. The more I sleep, the more tired I get. I need to start excercising.

    LoveMyVizsla: That picture is amazing.

    kellychameleon: I hope you are feeling better, wishing you a speedy recovery.

    Wendiwithani: You are beautiful!

    Quixhobbit: I absolutely love your wigs, you rock them all. 

    ladyhumps: Yeah, the LGFB session was great. The esthetician said to use either ice chips or fresh aloe vera doing a spot treatment. I stopped using acne products this week and my face looks a lot better. My mom has aloe vera plants and they are soothing to the skin. I place the aloe vera in the fridge and dab  just a little bit on my pimples. Reflexology is great, my hands and feet felt awesome.

    I only have tingling of the hands when I type so I don't know if I have neuropathy or carpal tunnel. I had tingling in my hands prior to chemo. I mentioned this to my MO and  he said to let him know if it worsens because he may reduce dosage, but I don’t want him to reduce the dosage. I have scans on the 22nd and I pray the Taxol is shrinking my tumors. 

    sarah_sunflower: CONGRATULATIONS on finishing chemo. :) 

    MissBee123 : I am sorry to hear that you are not a candidate for radiation due to your genetic mutation. Sending hugs your way.

    Cathytoo: I am TN and love hearing survivor stories. I am glad to hear your friends are doing great.

    · Share on FacebookShare on Twitter
  • Frill
    Frill Member Posts: 311
    edited March 2016

    MissBee: I'm so so so sorry. You just too bright and shiny a light - we all are - to deal with *more* news. Any news. I agree with Jen, you've gotten chemo chemo chemo and that's knocking out all the bad stuff. And you live so right, exercising, eating right, living in Colorado with all that fresh air and everything. Maybe no radiation is just a good sign for you somehow. *huge hugs*

    Jill: I totally understand about the fever scare. It sucks that something so minor is now such a big deal. I realized this morning I spent more time in the hospital with this infection than I did with my MX! So glad you took precautions and went anyway and that it's a cold and not bacterial hoo hah like I had/have.

    And this insurance business!!!!!!!!!!!!

    I had to know how much the insurance was paying, since I'm at one of the biggie hospitals. Even the invoice from the hospital is unclear. I looked at my calendar though, and on a day when I had labs done, saw MO, had chemo, - went to PT, too, but I don't think that's on there - the total is $6k. That pretty much looks like what happened that day. MD Anderson is in network, which is helpful. I know when I had my aneurysm surgeries, it cost a fortune because Methodist was out of network. Each surgery was over $100k.

    · Share on FacebookShare on Twitter
  • Frill
    Frill Member Posts: 311
    edited March 2016

    Fightergirl: I'm RAD51 also, I'm curious to hear what your MO says. I tried to do some research online, but none of it made much sense.

    · Share on FacebookShare on Twitter
  • fightergirl711
    fightergirl711 Member Posts: 300
    edited March 2016

    Frill I emailed her last night. I didn't get genetic testing where I am receiving treatment, and gave them a hard copy of the results about a month ago. I had naturally assumed that since my results for "inconclusive" for RAD51D and APC I would just go through treatment as planned. I'll let you know!

    · Share on FacebookShare on Twitter
  • Frill
    Frill Member Posts: 311
    edited March 2016

    Fightergirl: I had genetic testing coordinated by my hospital, but after what MissBee has said, and given that RAD51C is a subset, I'm now concerned. And mine wasn't inconclusive, it says "positive for pathogenic mutation in the RAD51C gene."

    But, radiation is a ways away. I can deal with it in April when I see the MO. I'd be more than happy to skip it and get some new boobs faster. Walking around without reconstruction sucks big ones.

    · Share on FacebookShare on Twitter
  • MissBee123
    MissBee123 Member Posts: 186
    edited March 2016

    Thank you everyone for your kind posts!

    Veronica, I don't know why I didn't think about gum! That's such a great idea. I will definitely try that next week.

    Jen, she didn't mention alternatives but I don't think they are out of the question. She was bringing my case up with two panels this week to further discuss and then we will meet again next week. I will ask her, thank you.

    DFWFLYGIRL, I'll be sure to ask about immunotherapy, too. Thank you

    LovemyVisla, thank you for the beautiful photo. I'm doing better today and remembering there are things I can change and things I cannot change. Whatever comes we all deal with what we are dealt.

    Cathytoo, thank you so much for your wise words and beautiful picture. The doctor really scared me when she touted that radiation resulted in a 2/3 decrease in recurrence, but she was also clear to mention that statistic did not include women like me who have had targeted therapy. You are right about taking things one day at a time. I have a friend who was diagnosed AFTER me who went through surgery, chemo, and radiation. She's already done with treatment and I was so envious of her knowing I have at least another year ahead, then 10 years of Tamoxifen. I try not to compare and you have helped me to remember that. Thank you.

    Thank you for the beautiful photo Myra!

    fightergirl and frill, as I'm sure you know, a lot of these genes are newer and not a lot is known about them yet. My testing came up in an unusual way. Last fall when my chemo didn't work my surgeon and I had to decide almost immediately whether I would have a lumpectomy or double mastectomy. My MRI was inconclusive about whether there was more than one area of concern and my surgeon felt the only other information we could use to decide was a fuller genetic panel. We knew I was BRCA negative but she sent away for a panel that looked at 20 genes rather than just the 6 most common. As soon as we got results back my surgeon told me about RAD50 and said they knew it was connected to breast cancer, but no one was sure exactly how. A meeting with a geneticist had a 2 month wait so that was really all the information I had to go on before making my decision. I literally got the results on a Wednesday, had Thursday to think about it, decided Friday, and surgery was on Monday. My MO didn't know much about RAD50, only that chemo treatment was not affected. When I met with the geneticist 2 months later she explained what RAD50 does and how it might affect me, but did not mention radiation. These were my notes from the meeting, and I assume RAD51C is similar:

    RAD50:

    No known risks for men.

    Deals with DNA repair. Works with NBN gene and MIR Ell genes (I probably spelled that wrong, it's phonetic). These all form a complex that interacts with the BRCA gene.

    50% risk of passing it to my children. If just I have it, no risk for boys, moderate risk for girls until age 40; unclear data after age 40. If my husband has it and a child inherits both copies it is extremely serious and physically devastating to a fetus.

    There are not yet any medical guidelines for best practice for this gene.

    It has been implicated in ovarian cancer but only in a single paper with 300 patients where a single woman in the study was RAD50 positive, and they have no information about that woman's medical history.

    There is a correlation between breast and thyroid cancer for RAD50 women, but no proven causation yet.

    Ask about a CA125 blood test (I don't remember what this is for, but I think it has to do with ovarian cancer monitoring)

    Recommends a vaginal/pelvic ultrasound 2x a year.

    Risk for recurrence is lowered for a NEW cancer with a double mastectomy.

    Risk for recurrence of current cancer is the same as women without RAD50 and is treated the same.

    Nothing about radiation, but I'm trying to give her the benefit of the doubt and think that maybe only a radiation oncologist would really understand the intricacies of how these genes and this treatment interact. I'm going to see another geneticist to discuss this further and see what they say.

    Thank you again to everyone. I'm so grateful for the support we are all able to give each other during this time. <3

    · Share on FacebookShare on Twitter
  • fightergirl711
    fightergirl711 Member Posts: 300
    edited March 2016

    Frill and MissBee - Still waiting to hear back, but according to my results for APC and RAD51D, they each have "variants of unknown significance," and that the clinical significance of the result is unknown. The variants are also published in the results, going to do a bit of research later. But I trust my oncologist more than any research i can do on my own. We'll see.

    UPDATED: Just saw this article too, worth reading: http://www.nytimes.com/2016/03/12/health/breast-cancer-brca-genetic-testing.html

    · Share on FacebookShare on Twitter
  • zinny
    zinny Member Posts: 281
    edited March 2016

    MissBee - I am so sorry to hear about your hard news. The little I know of you has shown me that you are incredibly strong and positive. HUGS.

    · Share on FacebookShare on Twitter
  • zinny
    zinny Member Posts: 281
    edited March 2016

    image

    · Share on FacebookShare on Twitter
  • zinny
    zinny Member Posts: 281
    edited March 2016

    image

    The beautiful day we had for skiing yesterday - and day 7 post DD Taxol, I felt pretty normal:) Legs much less concrete encased!!

    · Share on FacebookShare on Twitter
  • ArmyMom12
    ArmyMom12 Member Posts: 1
    edited March 2016

    Hello,

    I am about as new as you can get. I have to make up my mind on what treatment that I want: AC-T 20 weeks total,or TC 12 weeks total then follow up with 30 days radiation plus a hormone.

    The success rate for both are the same just unsure on what to do. I have my next appt the 23rd then they will place my port.

    Any information that I can get on these 2 treatments I would greatly appreciate.

    I am so happy that I found you all.

    Thanks

    · Share on FacebookShare on Twitter
  • jensgotthis
    jensgotthis Member Posts: 937
    edited March 2016

    ArmyMom12 - I am doing TC for 6 rounds (total of 18 weeks) and some here on TC are doing 4 rounds (total of 12 weeks, which I assume is what they are proposing for you). I can't speak medically about one over the other, but I can say that I have found TC fairly ok to tolerate. Each person has there own response to it of course, though. Mine has been sore throat, constipation, body aches, tiredness, super dry skin, and hair loss. These side effects hit hardest for me on days 4 and 5 and then ease up and I have two very normal feeling good weeks before the next treatment.

    One piece of advice I would offer is to think about what day of the week you want to have your infusions. I go on Wed, and that works for me because my worst days end up being Sat and Sun. I lucked out with that since this works with me, but I didn't specifically choose it.

    Good luck! Ask lots of questions - this is a nice, caring and informed group.

    · Share on FacebookShare on Twitter
  • Shiningstars
    Shiningstars Member Posts: 7
    edited March 2016

    I haven't posted for awhile but have been reading everyone's experiences. I'm supposed to be on the cycle 4 or last cycle of TC this coming Friday but it is now cancelled. Cycle 1 was the worse because of constipation. Learned my lesson and was proactive on cycle 2 and 3. Cycle 2, I have a little bit of hives a week after infusion but I didn't linked it to allergic reaction to Taxotere. A week after cycle 3, I broke out in severe hives. Doctor had to give to me steroids through IV and I had to take steroids for a few days after. Dr decided to cancel cycle 4 because the hives progressively got worse and he said if we do cycle 4, it will get worse. Has anyone here have the same experience? I feel bad that I couldn't complete the entire regiment but Doctor is worried about Anaphylaxis. I should be happy that I'm done with treatment and move on?

    · Share on FacebookShare on Twitter
  • zinny
    zinny Member Posts: 281
    edited March 2016

    Shiningstar - I can imagine it is very hard to consider not following the "original plan" perfectly, but it seems that chemo is more like cooking with a recipe than an exact science, and they need to adjust doses and courses of therapy depending on the individual patient, rather than trying to do the same thing with everyone. My biggest fear through chemo was an allergic reaction to Taxol. It is easy for me, then, to say "yes, be happy, and move on!"

    · Share on FacebookShare on Twitter
  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited March 2016

    Shiningstars, yes, allergic reactions can get worse each time. Your doctor is protecting you. My doc dropped my AC dosage by 20% because it dropped my counts too low. Consider it your customized plan.

    · Share on FacebookShare on Twitter
  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    ArmyMom12...I consulted with three oncologists. Two recommended ACT and one TCx4 with 2 additional if I did well with the 4. I chose TC because I was fearful of possible long term heart problems from A. I have completed 3 infusions and the side effects have been almost zero. There is a great post here on how to handle Chemo. I think it's Tiffany's Terrific Tips For Doing Chemo. I followed every suggestion. Whatever you decide I wish you well. It's not great fun, but very doable and necessary. Most important...drink, drink, drink. Walk, walk, walk. If you are getting Neulasta, take a Clariton every day for at least 7 days. Stay on top of constipation with Senekot and Colace. For me Day 1-3 were fine and totally normal. Days 4-6 were different. A little tired (passed quickly, bad taste in mouth, fingers tingling sometimes, Chemo flush on cheeks. I had no nausea. Good luck with whatever you decide.

    · Share on FacebookShare on Twitter
  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    RAD50....I'm interested in all this talk about testing. No one ever mentioned genetic testing to me except for the BRCA mutation. At what point of diagnosis or treatment would this testing be done? I'll be starting rads in about two months

    · Share on FacebookShare on Twitter
  • buttaflydiva
    buttaflydiva Member Posts: 88
    edited March 2016

    my insurance, and a lot of others wont cover the genetic testing because I have no history of breast or ovarian cancer in my family. I discussed it with several people at the cancer and most said theres not too much point in having the test done if you have no family history. Of course a friend had a good suggestion. Her daughter (in her 30's) had breast cancer so because of her daughters cancer, insurance finally covered the test for her. both her and her daughter carried the gene. ive suggested to my mother that she get tested because of my status, that way if she carries the gene, then I will definitely get tested even if I have to pay for it myself

    · Share on FacebookShare on Twitter
  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    I was tested for the BRCA gene, which was negative. I didn't read through the report. I will now after reading about Miss Bee's experience

    · Share on FacebookShare on Twitter
  • fightergirl711
    fightergirl711 Member Posts: 300
    edited March 2016

    Cathytoo I didn't read through my report either since everything was negative except for the 2 genes that were inconclusive. I'm still waiting to hear back from my oncologist. She's usually very responsive, she might be waiting to hear back from their own genetics team.

    · Share on FacebookShare on Twitter
  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited March 2016

    I had genetic testing and was BRCA negative, but was positive for one inconclusive gene which I was told by both my genetic counselor and MO would mean no change in treatment or my future health with concern to cancer.

    Side note - is anyone else's hair growing back?? Mine started coming in like crazy on my head about two weeks ago. I just completed round 4 of 6 last Wednesday.
    · Share on FacebookShare on Twitter
  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 146
    edited March 2016

    Wendi--awesome to hear!! I am on different regimen and still bald as a baby's bum:))

    · Share on FacebookShare on Twitter

Categories