Calling all TNs
Comments
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Has anyone heard from LuvRv Michelle?
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Her daughter - Lovinmymom - posted an update an hour ago on the "So...what's for dinner" thread. She's had a rough few days, possibly a reaction to her chemo, they think.
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Thanks Kayak. J
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No scans, blood tests, MRI or anything for me either. Saw breast surgeon once only after surgery (lumpectomy) and she said she didn't need to see me any more. I see my MO every 3 months - she checks my lymph nodes and breasts. THe only thing she said is to be aware of new aches, pains or little pimples along the incision line - then to call her immediately. Keeping my fingers crossed, and doing the diet and exercise regime. It is a lonesome path now. I feel so vulnerable and yet there is nothing more I or the medical system can do.
I am 4 months pfc and I have good energy and feel almost back to normal - thank God. I have one year's leave from work which is up on August 15th - then I have to make the decision whether to go back at all.
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Thank you Kayak, I had been concerned about the fact we hadn't heard from Luv. *blows kisses and blessings to Luv*
Jan - here's the message her daughter left on the board:
Hi Ladies,
"This is a quick update for you on my mom LuvRVing (Michelle). Mom went to the hospital early Thursday morning. She was very weak and disoriented, and unable to get up. She was given fluids and Magnesium which seemed to perk her up and she went home that afternoon. She was back in the hospital all weekend and though they've continued to push Magnesium and give her transfusions she's shown little improvement. They did release her to go home, but walking is extremely difficult and she has some moments of confusion. As of right now, it seems like this is a reaction to the Gemzar. She had an MRI last Monday that looked good, with everything continuing to shrink and no inflamation. She was supposed to have a PET scan on Tuesday but there was an insurance snafu. Her last tumor markers test had her at 250, which is slightly higher than her low of 165, but the doctors seem to think her current condition is her intolerance to the chemo. Unfortunately we had to deal with on call doctors all weekend, so we're hoping for more insight from her oncologist whom she's meeting with on Wed.
Fingers crossed that this is just a bump in the rode, and that with rest and a chemo-break she can regain enough strength to continue her fight. I know she has so very many of you here routing for her. Please feel free to repost this in the triple-neg and Stage IV threads. It's possible mom will be able to read through these in the next day or so, but unlikely she will be up to posting a personal response.
All my best to all of you strong, amazing women."0 -
Thanks Kathy
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Michelle - sending you love and wishing you better days ahead.
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ALHusband,
I started feeling 75 percent my old self about 3 months after treatment ended. The other 25 percent is lingering chemo brain and some late afternoon fatigue I didn't use to have.
Everyone is different however, depending on types of treatment, surgery radiation as well as the person's constitution and the disease process itself. I hope my and others' answers help.
Peggy0 -
Michelle,
Sending you lots of love and hoping you will be feeling better very soon!
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I am now 2 months out from chemo and 1 month and 9 days from surgery. Started radiation yesterday. My surgery indicated no evidence of cancer. When they did a mammogram and MRI, there was nothing to see. Feels very promising! My surgeon did a beautiful job on my lumpectomy and sentinal node removal. When I went to a new cancer center for the rads (closer to home) they couldn't believe how good the surgeons work was.
I have some neuropathy in my left toes, about an 1/8 of an inch of hair on my head. My eyebrows are beginning to grow as well as my lashes. My left big toe nail is disconnected (I've superglued it to my skin). My right 2nd toenail is bruised and loose. All of my fingernails are separating from the bed from the ends down, not the quick. I've gained 4 lbs from the whole ordeal.
I managed to work, move from one apartment to another and leaned hard on my significant other when my strength diminished.I have only happiness and joy everyday!! Though I have been angry at my initial doctors, I never let this disease take my happiness. Even if the prognosis was to be bad I had accepted it early on. This disease has been hell, but there has been some good from it. My daughter and I reconnected after a long struggle.
I found and felt love at the age of 46! I am 49 now. I still feel lucky everyday of my life and will battle this disease until my last breath!
I wish everyone who has this nasty disease to always focus on the good things and the things that make you happy, it helped me so much!0 -
Thank you PeggySull and to everyone in this group. What a great place this is for TNBC "warriors", but it's also a great place for us spouses. I am inspired every day by you ladies and your courage and your willingness to support each other. Hat's off to all of you, and please accept the sincere gratitude of a husband who wants nothing more in this world than to help my wife get well again. I know that, as a husband, and not someone with TNBC, I could never really claim to know fully what you are all going through, but I have committed to my wife that I will do everything I can to gain as much knowledge to at least try and understand it and be helpful. Much love to all of you from the land of "Husbandville"!
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Hi ladies,
My mom (Michelle/LuvRVing) is happy to be home. She's eating much better then she was during her hospital stay. They've decided to up her Decadron to 12mg which, if you know my mother, is not making her happy. She is walking a little better and has a little more energy at times, but her blood pressure has remained oddly elevated and she seems to spike a small fever at least once throughout the day or night. She also has moments of confusion.
She is in really good hands. My step-father is taking excellent care of her, and her sister has been visiting and helping out as well. Unfortunately I'm home with the kids, as my husband is in California this week and I have a cold. Please keep her in your thoughts and send her strength. It's been a tough week and we could all use a turn for the better.
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thank you so much for the update on your mom...I have followed her journey and think often of her. I hope they get this straightened out for her soon
Maggie
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LovinMyMom -- Good to hear from you. Yes, she is fortunate to have such loving care-givers. Sending my best and strongest thoughts for quick return to her normal self. Jan
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It's been awhile since I posted but I was perusing this thread and thought I'd check in.
Someone asked about aluminum free deodorant. I've been using Earth Science Tea Tree & Lavendar (http://earthsciencenaturals.com/product/245/Deodorant-Tea-Tree-%26-Lavender-2.45-oz.-.html) and it's been wonderful! A little sticky at first and it took about 2 days for it to really work but I've been using it for nearly two months now. It smells strong at first but otherwise great. I've also used Herbal Clear Sport (http://www.herbalclearnaturally.com/home.asp) when I was running and that worked as well.
Next week is my last EC treatment and so far so good. I'm slightly nauseous most of the week of treatment and work from home but by the weekend I'm good and the follwoing week (this week) I go into the office. Other than being slightly tired things seem to be okay.
My main problem is pain/redness in my arms a few days after treatments. I saw the triage nurse on Monday but she confirmed it wasn't due to the epirubicin leaking and that it was almost like an allergy - just a reaction to the treatment.
In August I'll start my 12 weeks of Taxol and wanted to ask what that is like. How are the side effects? I heard it can be taxing on your vein and I'm not so keen on a picc line or a port and will ask my MO but wanted to get some opinons as to whether it was better to start with the treatment via IV and go from there. I'm really hoping the nausea won't be as bad but after reading this thread I'm a little freaked about losing my nails! LOL
One last note -my pic is not representative of my current hair cut - it's MUCH more sparse now!!
Thanks everyone for posting and helping a girl through all of this
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Sending hugs to Luv. Thank you LMM for posting an update. Please let her know that the TN's are pulling for her.
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Wishing Luv feels better quickly! She is lucky to have such a loving daughter! Lots of positive happy vibes your way!
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Hi aeryno - Everyone is different, but Taxol was very easy for me..... no nausea, no nail issues, and barely any other side effect to speak of. They give you IV benadryl to prevent any allergic reactions, so really the biggest issue for me was trying to arrange rides, since I was afraid of benadryl's drowsy side effect and didn't want to risk driving myself back and forth. I had a port, so vein irritation was not an issue. Since you are having 12 weeks of taxol (as I did) rather than the compressed dose dense regimen that others have had, the likelihood for side effects is lower. Hope your treatments are as uneventful as my were. Regards. Carol
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Another interesting article from Life Extension....maybe a cure is closer than we thought.
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aeryno - I didn't get a port and my veins were just fine. Although I had mind every 2 weeks for 4 treatments . Side effects on taxol vary from person to person - far less nausea in general - but for me I had joint aches and pains and a bit of neuropathy which was managed by getting a reduced dose of taxol. Over all, taxol seems easier for most people.
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Luv - glad you are at home. Hope you are feeling better real soon. Thoughts and prayers are with you. Hugs!!
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ALHusband - this a place of support for EVERYONE on this journey, including husbands. I'm very glad you've found this place helpful.
LovinmyMom - Thank you for the update. Your Mom is in my thoughts and prayers every single day.
I wanted to share with all you ladies that I was REALLY, REALLY BAD at my visit with my MO today. (The purpose of the visit was to chose my chemo and to arrange to transfer to a local facility for the treatment)
She asked me what I had decided. I explained that the decision had been difficult because 3 MO's had all given different recommendations. I reached in my bag and took out a small gift box and proceeded to shake it. I opened it up and reached in and took out one of the many slips of folded paper that were inside the box. I unfolded the paper, read it and looked at her and said, "okay....I'm going with CMF." (I wanted to bring a Magic 8 Ball, but I couldn't find one)
I wish I had a picture of the look on her face!!!!! Her eyes got as big as saucers and her mouth dropped wide open. She blurted out, "OMG.....tell me you didn't really just pick your chemo by that method!!!!!!!" She figured it out quickly when I started to laugh. (All the slips said CMF). I explained that it wasn't really "a choice".....out of all the chemos that were suggested, it was the only one that was at least mentioned by all 3 MO's (none of the others were the same).
In my defense, when I met her 3 months ago, I warned her that I was going to be her "worst patient". Sadly, this poor, very sweet young woman is finding out that I was telling the truth!0 -
kathyrnn - that story about your MO visit just made me laugh so much. Thanks for sharing!!! Not to sound negative, but sometimes I think that is what the medical community does - just picks a treatment out of a hat - and most of us go along with it!! Scary thought - eh?
Don't worry about being the "worst patient" - it is the "difficult patients" that get the best treatment. Good luck.
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aeryno...I finished my 12 weekly Taxols 18 months ago and I am now almost 70. I had weekly IV's with no problems at all. Sometimes the drip would be a little painful at the site (no port) and the nurse would just speed up the drip a little and that took care of that problem.
I got a very LITTLE neuropathy in my toes on both feet which I still have but it is not bothersome at all. Just a little numbness but no pain and no trouble walking. After the chemo was done, I noticed my big toenails were dark at the cuticle but that quickly grew out as well as the lifting of one nail on the side. I just kept an eye on it until it grew completely out so that I didn't catch it on anything.
I had nausea about 3 every afternoon for a few months but the gravol type meds they gave me in the beginning worked just fine. I was fatigued but that was more likely my age than the Taxol. I did get sleepy tho during the IV so you should make sure you have someone to drive you home after the treatment. After the first AC chemo, the Taxol was a walk in the part...so were the rads if you are having those as well.
Good Luck!
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AlHusband---I finished chemo late Oct. 2012, and November was a wash-out. Developed Lymphedema and had to travel to a PT/Ot for treatments most of that month. December I started radiation, and although I was very tired, I managed to drive by myself (an hour drive each way) and get home without falling asleep at the wheel (except once when I went off the county road near home and into a snow bank. Woke up and hit the brakes just in time to NOT go down into the creek.) In January I finished chemo and we wnet to Florida for 2 weeks, and I managed to walk 3 miles on the beach. Then I knew I was on the mend.
But I'm still not ready to walk a half-marathon as I used to do. Age may be a part of this slow recovery. I'm 76. Nat
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Kathymn - I love the story of choosing your chemo treatment. Good chuckle there. Nat
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Aeryno - I did 12 Taxol then 4 AC. I didn't have a port. I made them start with the veins in my hands and gradually work their way up my arm. My veins are still in perfect shape and they had no problem doing blood draws using that arm after treatment. I found the Taxol to be fairly easy. One tip: if the IV site gets an achey feeling, have them put a warm towel on it. The heat opens up the veins. I did lose all my toenails, but it didn't happen till about 6 mo after finishing chemo. I didn't lose any fingernails.
Adagio & Nat - I'm glad a gave you a chuckle. Getting different chemo recommendations with no rationale why one would be better than the other was frustrating. I felt like I should get some monkeys and have them throw darts at a dartboard to make the choice. I figured the little trick with the box clearly reflected how I felt about the whole process and I didn't have to spend a lot of money on bananas.0 -
Aeryno,
I am in the middle of taxol treatments which are weekly. I have a port. So far I am doing well, no pain or neuropathy. And my hair is growing back. Strange cuz my eyebrows are gone and I am in the midst of teatment. I do get tired, but it is tolerable. I talked to a young gal who lost her toenails and some of her finger nails, but is feeling good. This is much much easier than a and c treatment.......Good Luck...and take care....Lori
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Wow, thank you Carol, adagio, schatzi14, Kathy and Lori for your insight. I don't like being surprised so having some inclination as to what to expect helps.
Continued good wishes to all!
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aeryno my wife just completed number 9 of 12 weekly Taxols. In 9 weeks, so far she has missed 3 days of work. She felt very good for most of the first 6 or 7 weeks. Went to work every day. Weeks 8 and 9 you can tell it's catching up with her. She's getting tired faster and having slight nausea. Her counts (red and white blood cells) are dropping a little each week. My point being that she has had great weeks for 7 out of 12 and numbers 8 and 9, while not as good as the first 7, weren't that bad either. She has no issues with finger or toe nails at this point. She is a little achy...but it's tolerable. Bottom line, even if the next 3 weeks are terrible, she will have been pretty good for 75% of the treatments. Not a bad percentage. Be strong. Eat well. Stay as positive as you can! You'll get through it!
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