Calling all TNs
Comments
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Thank you, LoveMyVizsla. I think you may have shared it here's our on the weekly Taxol thread, but can you remind me how your allergy presented itself? Did you terminate your treatment early? Your posts are of particular interest to me since our diagnoses and treatment plans are so similar, but you're farther along, timewise.
Lyn
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I didn't have an infusion reaction. After about 5 weeks, I broke out in hives. I don't tolerate Benadryl very well, so my dermatologist put me on four days of prednisone. That knocked it down, but my lupus rash flared up immediately after that. Every week that I had taxol, the rash would get angry for 2-3 days, then calm down a bit until the next week. They even switched me to Abraxane for the last three doses in case I was allergic to the castor oil the paclitaxel is iced in, didn't matter. I completed the full twelve doses and was never so happy as when I was finished.
The list of side effects from taxol is twice as long as from AC. I had constioation until the hives hit me, then diarrhea after each dose, super dry skin and mucous membranes, bloody nose, slight neuropathy, nail lifting, folliculitis, dry cough, nightly fevers, rash on my fingers. Near the end I had fatigue, weakened and stiff muscles, especially legs and feet. The fatigue cleared about 2-3 weeks after completion.
Wishing you the best, Lyn, and minimal side effects.
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Thanks for the reply. LoveMyVizslas. Ohmigosh, you got almost every possible Taxol side effect, didn't you? I'm so sorry that you endured so much.
I've had problems already with a nasty infection when my seroma was drained by the surgeon and AC has kicked my butt. I want to move forward, but while my foot is healing nicely from mild hand / foot syndrome from AC #4, I've developed an infection in my eyelid that will probably delay my first Taxol. My first lumpectomy was way back in July so the treatment process seems to be dragging on forever with months of treatment still ahead. Recognizing things will never be quite the same, I'd like to return to something of a normal life.
Lyn
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amw5, I had 12 weekly taxol treatments with carboplatin added every 3rd week. Then I had AC after taxol.
I think it is important to stay ahead of the nausea and take anti-nausea meds before you start feeling sick. I also made sure to take stool softeners regularly to keep constipation somewhat under control. For the neuropathy, I took a B-complex vitamin and also used Glutamine (15 grams mixed with apple juice twice a day). My taste was really affected and sweet things tasted horrible. I ate a lot of roast beef from arbys. Drink LOTS of water!! And, of course all of my hair fell out about 3 weeks after starting taxol, but I am happy to say it is growing back now (started growing back about 8 - 10 weeks after last chemo).
Also, since chemo affects your nails, I kept my nails trimmed short and kept them painted with the darkest nail polish I could find. My nose got dry too sometimes, so I used the Ayr nasal saline gel to keep it moist.
There is a thread for the weekly taxol folks on here, you should check that out for lots of good info!
Good luck with your chemo!
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Cocker, I'm not a regular on this board like I was before, but I am amazed at the number of women and AL husband who love you. I get a wonderful image of you from their comments. I am so sad that you are going through all this and pray that your meeting with the oncologist gives you a plan that helps you feel positive about what's next (so glad that what's next is a great grandchild!). Hugs, Pegg
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Lyn, some of the side effects went away quickly, like the cough and dry nose. Others take a little longer. It all seems like a surreal dream now.
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Lyn just wanted to add had no nail damage. If I remembered I painted my nails dark. They are strong now as they were before. I do take 5000mg of biotin a day. Have been since chemo ended. I don't regret icing because I feel if I had not done so, my neuropathy wold be worse. Just my case.
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Annie - I know getting the official diagnosis is hard, but like I said, stay strong and fight for that little great grandbaby on the way! xoxoxo
And speaking of babies...I am over the moon to share that after 6 years of trying to conceive with failed IVF's, losses, and a breast cancer battle in between...I am finally going to be a mom and watch my husband be the amazing father I know he'll be!!! We're beyond grateful to our friend for carrying our baby and helping our dreams of having a family come true!!!
Our little miracle is due May 26, 2017!!!
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Ally, OMG congrats. I am thrilled for you. Million virtual hugs!!!!!
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cocker, let us know what's up. Sounds like this is not BC but lung cancer. We are all going through this with you. Im not a mushy chick but you are our matriarch. Yay to babies!! xo
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Hi to all Merry Christmas and Happy Holidays. A quick note to Normalnorma,I had the opposite problem with eating. Any meat made me sick. I ate A lot of cracker.
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OH ALLY!!! I am SO THRILLED for you!!! How exciting and wonderful!! I have tears in my eyes as I type!
Keep us updated!
BEST BEST wishes and lots of hugs to you, your husband and your very special friend!
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congrats, Ally!!
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Congrats Ally!! I'm so happy for y'all!!!!!
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Hi Cocker, you are always in my thoughts and prayers.
Congrats Allydp! I am so happy for you. I wish your baby and Cocker's great grand baby will have the same birthdays! That will really be something! Great news to hear!
Happy Holidays to all!
Gina
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I'm so glad my beautiful Ally has now shared her wonderful news with you all. I've been crying for joy and just hanging on until she told you. AND the baby is to be born on my beautiful youngest daughter Mandy's birthday, May 26th. She couldn't have a more beautiful, gorgeous, generous, kind and delightful baby if it comes on my girls birth date. Congratulations my sweet Ally. xxxx
Now for the update on me. Chemo starts tomorrow at 8am. I will get Carboplatin and Etoposide. I think it was you Gina who was spot on with that one. I have a new oncologist as I did not feel like travelling the extra hours this time. He was clear, straight forward and honest but with some humour which really suited me. I've got so many pills at the moment I could open up my own pharmacy. Of course I had to know the odds, well I guess they are not great but at least it is some time. 4-6 weeks without chemo, six months with chemo but if I do well then maybe one year or possibly 18 months though I am a firm believer that only one knows when its time to call me home and at the moment He seems he is in quite a hurry lol. The onco said I should feel better after the first infusion but of course all my hair will now go again. Not that, that bothers me so much as I had a lovely, medium colour auburn hair before which was wavy and I could push it into a style and it would stay there all day now its thin, straight as, and won't do a thing I tell it to so I'll be glad to get shot of it. Not only that my new hair-do for the breast cancer was in the winter so for now it will be very cooling. Will update you more as the dreaded tomorrow unfolds.
Mike are you really going to be a granddad or is your daughter only "Fooling" with you. Seriously I have now got to know you fairly well and believe you will make a special and beloved granddad. As for my But, I'm not even sure you could find one at the moment as I'm almost down to 50kg. I was only 47.5kg when I married with a 22" waist. Gosh those were the days.
I am also giving my password on here to my Mandy and if I can't keep you updated then she will. She is a beautiful, beautiful sole and I'm sure you will love her as we do very much.
Have a peaceful, day ladies. All the ladies in pain, having anxiety, feeling depressed, going through treatment, then believe me when I say I am thinking of you all. And to those ladies feeling well then enjoy every moment and go out and live and be happy. Happiness is one of life's blessings so enjoy every moment of it.
Love you all so much and can feel you in my pocket. xxxooxx.
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Hi Cocker,
Yes I am the nosy one who gave you the chemodrugs likely to be used in your case. I sort of felt heartbroken when you mentioned that you have sclc and did an immediate research on it and quickly posted it for you to read. But then I realized that it shouldn't be me doing this thing for you coz it might cause you more stress. I changed my post to a picture instead. Now I'm blushing with embarrassment. Sorry for being an eager beaver, I just want to help. I also did mention about Traditional Chinese Medicine to "complement" your chemo, but that would only be an option if all else dont work.
Keep well rested and prepare for the battle ahead. You have proven before that you are a tough ass warrior and you can do it again. You will go thru this with all our prayers and support.
Take care,
Gina
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Ally - Aww congratulations. Thx for sharing this lovely news with us.
Cocker (((hugs))) - Thx so much for updating us. Yes, we are all still in your pocket. Love you.
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Ally that's GREAT news. So happy for you.
Cocker, the answer is yes, going to be a granddad and will give it my best shot! It's going to be a boy. I was very sure it was going to be a girl...but...of course I'm wrong!
Kathy had a regular check up today. Everything looks good! All the glory to God!
Continued thoughts and prayers for everyone.
Mike
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Alicia, how exciting... Congratulations!
Thanks for the input on Taxol, ladies.
Lyn
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Sweet Cocker we will all be with you in your pockets tomorrow! I'll send up many more prayers for you and your family as you start chemo tomorrow. Love you so much!!
Mike, I'm do glad to hear all is well with your wife!
Love you all and praying for all of you!
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Mike your best shot will do, that's all you need Granddad to be, and to be there for your daughter. Your love for that babe will yield many many wonderful years for you. So very glad your Cathy is doing well. I don't need to tell you to look after her you are already doing a marvellous job of it.
Gina you gave me no stress whatsoever and was truly helpful. No need for embarrassment either, I loved that you loved enough to help me. The only word I really and truly hate is recurrence because it strips you from any hope, energy or joy. I know of course you know about it but I have never wanted any one of you to worry unnecessarily about it because to me that's worse than the first diagnosis of cancer because at least you have hope then. Please don't feel bad on my account because you and these ladies give me hope. I have never been one to take supplements because I think if you eat green leafy veges and lots of veges along with a healthy diet you get all you need but some of the girls do take them and find lots of benefit and that is good because its what they believe in and feel good about so I say take it, its your body and you know what's good for it. My previous onco was against taking supplements because she didn't want them to interact with chemo but its your choice, your bodies and your health. Please don't feel bad you have helped me enormously and I love you for it.
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Ally .. Congrats to you and your husband!!!! one of my best friends has 2 beautiful daughters with different surrogates and everything has been just roses for them!
Cocker, I'm glad you have a plan - and I agree, that no-one really knows when we will be taken so I hope you can just enjoy your lovely family as much as possible in the mean time - and get to snuggle your great-grandchild!!
Everyone here has been through so much with cancer and then of course everything else that life continues to throw at us. My husband and I went to dinner with a couple the other night that we haven't known long, or well. My husband and I joked and told them about the terrible couple of years we had with all of the cancer and then my accident in July ( my hand is currently in a cast from latest surgery - and they asked about it) ... only to find out from someone else the following day that they lost a 12 year old daughter last xmas season in a car accident - and have hardly been out socially since. Boy, was that humbling! It made me realize, that even with all I've been through, it "could have been worse" ( I know, that is over used!) I hope this rambling makes sense. I've been thinking about this a lot lately, and I'm just trying to be grateful for whatever time I have.
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Cocker,
It's good to hear those appreciative and encouraging words from you. Thank you so much.
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Cocker, following your posts closely, you are always in my thoughts
Ally, I jumped for joy at your post! Thank you so much for sharing those pictures with us. Such great news, very special news.
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Ally...such wonderful news‼️ So happy for you.
Annie...as always, you are in my thoughts and prayers. No matter what we are told...days, weeks, months or years...we do not know what lies ahead for us. All that matters that we live every minute we have here on this earth. I hope you are surprised by the upcoming treatment and it's easier than you think.
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Ally---- I'm so so happy to hear your wonderful news of a baby blessing in May!!!! I will be praying with you and waiting in expectation with the rest of these great people for that day to arrive so we can meet the baby.
))))Cocker---- You are so incredibly loved and we all are believing that you will get much much more time here on this earth than your Dr is saying. Like you said, we know who is ultimately in control of our time table. I must admit that you bring a big smile to my face and I wish we were all closer so we could all get a good laugh in together. You are a gift to us. We forget about the cancer, the side effects and the doom listening to your stories. Praying with you on your new treatment plan and believing for no side effects and lots of good memories with your old feller and grand babies. Thank you for always being real. Xoxo
Georgie---- Such great words of wisdom. Thank you for sharing with us!!!!
Have a great night everyone.
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Ally so happy for you.
Cocker, thanks so much for keeping us updated and encouraging all of us.
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Dear Annie/Cocker - It sounds like a plan. As you say, it's all in God's hands, but many have confounded anyone's medical "outcomes." If anyone out there deserves to do well, it is surely you. It is great that you like your doc. Having confidence in your medical team and being able to have a genuine relationship with them makes traveling down the road easier. Your Mandy sounds like a very special person whose light also shines. Not surprising as the apple doesn't fall far from the tree-:). You are always in my prayers dear lady. Congratulations on your upcoming great grandchild!!! What a blessing!
Dear Ally - Huge smile on my face when I read your exciting news!! Congratulations!! What a lovely, lovely friend you have to give you and your husband such a precious gift.
Dear AL - Congratulations to you too!! You will LOVE being a grandparent!
If anyone out there would like to know of my experience with icing during Taxol, please PM me. I posted quite a bit about it when I was going through it, and am happy to share if it would be helpful. It was completely successful for me. I had no neuropathy at all. And as Cocker said, I was also told to not take supplements during chemo as it may interfere with the chemo's efficacy. The only supplement I was allowed to take was Vitamin D. Low levels of Vit D may be a contributing factor to TN. I continue to take a D3 2000 IU capsule morning & night.
Thinking of all you lovely ladies
Paula
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Cocker - I don't post much, but I do read and when I logged on here tonight and read your recent posts my heart broke. I'm so sorry you have to go through this. I don't know what else to say.
Maryann
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