Calling all TNs
Comments
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Aggie, I think it's a good idea to get the Ativan. Ask if you could take it in the morning and night, at least for the first few days after chemo. My Onc said I could do that if needed. I know all doc's are different though. Hope today is better. Please keep us posted! Hang in there!
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Hi all, I have been a member of the thread for a long time but haven't been on for a while. I admit to being a lurker where I read but don't often post. Sorry to see so many new members but the support is wonderful (even for lurkers!). I, like many, have turned into a research junkie as I want to understand as best as possible what we're up against and how we can help ourselves. It interests me as to how TN is treated in other areas and how tx has changed (and not) over time. I was wondering if anyone has read the articles regarding an Australian researcher whose work on another illness resulted in his stumbling upon a possible cause for TN. He has a theory as to why treatment works better for some than others and what drives recurrence and mets. There appears to be a gene called ID4 whose expression mutation is involved in many aggressive cancers. That might explain why we see patterns such as many having a personal or family history of lymphomas and other cancers. Many aggressive cancers seem to be "basal like" (BRACA pos ones as well as others) which platinum drugs show effectiveness. This disease is heterogeneous where one size does not fit all. I think when these patterns are observed and studied the dots can be connected and target therapies identified. Epigenetics is the key to understanding this horrible disease.
Best to all, Nance
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njprn, do you have a name or a link to that article? I would like to read it.
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here's one of them. pretty interesting. we need to push our oncs for more genome testing so we are taking drugs that match cell types
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i don't think the link posted...
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I got the Ativan scrip, yay! Can take every 6 hours as needed.
Also, what is everyone else's experience with Neulasta? How fast do the bone aches start? My lower back and hips are KILLING me already, and it's only been 5 hours
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Glad you got the script Aggie! They told me to take Claritin or Zyrtec after taking the Neulasta shot to cut down on the aches, and for some reason it did help me. I took Zyrtec. So I didn't have the aches. I also took Tylenol though. You may ask your Onc in case they have a difference preference. Sorry you're achy already!
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aggiemegs: Hey, there! I've been living on generic Claritin since my first AC chemo. I've got bad environmental allergies anyway, and the docs said it can't hurt. It really did keep the Neulasta bone pain at bay!
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Why on earth didn't they tell me this??? I have Zyrtec! Will take that now!
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aggiemegs, - take clariten!! - i dont think zyrtec is as effective! i am also a fan of emend and ativan for tummy, - along with ginger root candy!!
i have lots of posts to catch up on, - sending be well wishes to all, - Happy Friday!
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Ok, I didn't have Zyrtec, so I took my son's Claritin, lol
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Just FYI-ing of Pet Scans
Hey Gang,
Had my Pet scan today and would appreciate prayers that all will be clear. We are checking an area where the cancer returned that lit up a bit more last time, hoping it was inflammation. I wanted to let you all know of some new info. on the Pet scan incase you are not aware of it yet. They said it was new findings. They are not requesting that patients wear long sleeves, long pants or skirt and shoes that cover your whole foot and not let the A/C blow directly on you on your way there. They said that when the skin got cold it was showing up brown on the scans and brown means trouble. Even if your place has not told you to do this you might want to. I belong to a big cancer center here in Atlanta, Ga and they get info. a lot faster at these places. Just wanted to share it with you just for your information.0 -
Aggie, I had a terrible time with taxol and neulasta...I know I have a high pain tolerance, but had a super hard time with it...I did take claritan hope you get some relief. Hang in there!
Njprn, I have IBC which is also basal cell like in structure, and it too was very responsive to chemo, thank you God. Thanks so much for the article I like to read about advances.
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I'm praying for you Stupidboob!! Please let us know what your results are. HUGS!
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thanks for the information stupidboob, luv and nj!
will pray for clear pet scan stupidboob.
that reminds me , how are u smlv?
didnt hear from fighter since long too..
keep popping in ladies, even if it is just to say a hi... it is always wonderful to hear that all are doing well!!
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Took Claritin daily through chemo, never had a bone pain or any reaction. to Neulasta. Had a friend in his mid 80's on Neulasta for his leukemia chemo who was told to take it and worked for him also.
Prayers for sure stupidboob.
Paula
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thanks for the link Njprn, very interesting.
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Stupidboob, in your pocket! Positive thoughts and hugs.
Been taking a break and trying to get on with living a normal life, if that's possible! Trying to loose the 25 pounds I put on with chemo, down 7 so far. I had my check up with PCP and she said my glucose Levels are in diabetic range but could be because of the steroids, so she's giving me 2 months and retesting. I've been trying to walk a mile a day despite my very sore joints and achiness. I'm also on a low carb diet so I'm hoping that this high glucose is temporary.
Welcome to all our new sisters. This is a great place for info and support!
Aggiemegs, unfortunately Claritin did not work for my neulasta pain and I was put on very strong pain pills- which didn't do much either but tried (on the late side- think it was my last TX) a heating pad on my thighs and found some relief. Knowing that my pain only lasted a few days made it bearable. If Claritin doesn't work, please tell your MO so you can get pain RX and try a heating pad. Hopefully you won't need it.
Hugs to everyone xxx
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stupidboob, prayers for clear test results!!
Nancy, fascinating article. I want my sample tested for anything they can think of. I know epigenetics are going to be the key to this.
My onc is apparently the only one who has patients using Benadryl instead of Claritin. The nurse likes to keep things as cheap as possible, but I'm getting Claritin today. My bone pain was so severe in my hips, lower back, and legs treaty that I was eventually in tears trying to walk, and I'm no wimp. 😩
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Happy Saturday my TN sisters! got first round of carboplaxin yesterday. Usually I cant sleep well from deccadron: did fall asleep but up at 4.
I honesly feel the chemo destroying these cells. Right now just severe sweats: I look like buckwheat in the morning: my "new hair" is still curly, straight, and all over the place. Going to have fun with it before the next shave. Both our twins will be home 10/16: DH and I will tell them then. I hope they can partake in the fun!
Aggie: I had an awful time with neulesta shot: I did have to use pain pills to get through work. They finally gave me the other one: newu???? and it was much better.
For nausea, zofran worked for a while but honestly putting the patch on for the whole week is a lifesaver. Called Sansusco .
Sweats have been terrible for awhile: I think it is the damn cancer: but the tx does make me sweat.
Sugar free popsicles are the one thing I have always been able to eat. Right now bananas make me gag.
PM me if you need to Aggie
Ally, have a WONDERFUL time!!!!
Cocker, you bring me a smile with all your posts
Supid boob- prayers, prayers and more prayers! I am very active on Christian women thread, although I am under 60 (53)
Are you going to Cancer Center of America? I have looked at them
I am grateful for this drug I am on: need prayers that BC?BS will approve abraxene. that is the second one I need. Apparently its not used for uterine, but my MO has talked with MD Anderson, Sloan, and this is what I need.
I am still in a really good place. I know all of you would fight with grace just like I am.
We are all survivors! My TN is still in remission, I have had another year with family, and ready to see them graduate from college next year.
I hope those that need rest will get it, if nauseated, call and get something else.
Hugs and love
Kath
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Not only are we survivors, we are WARRIORS
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Kath, where is the Christian women thread??
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Thanks so much for all the tips! I feel like the Claritin has helped some. Took my pain level from about an 8 to a 4-5. I have a pretty high pain tolerance too (I had my last baby all natural, by choice!) but the constant ache is enough to make any person crazy!
My nausea is still comin and going. Today is the last day for Emend and steroid, so I assume tomorrow will probably suck. Nothing tastes right, and my tummy constantly feels like I just finished a HUGE meal, so I'm having to force myself to eat. Definitely a new experience for me, lol, I can typically always eat! I added cucumber to my water to make it drinkable, and that seems to be working so far.
I feel "wobbly," and I'm not sure if that's the chemo or the other drugs I'm on. My legs are super wobbly, and my hands are starting to get shaky too, making it frustrating to type on my phone!
Hope everyone is having a good weekend
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Hello slv58 (Shari)
I read your post and wanted to send you my best wishes.
I do hope you will be able to lose the necessary weight.
Is there any way that you can come off the steroids? It is well known that steroids can cause weight gain and diabetes, not to mention osteoporosis.
I have a cousin who was put on long term use of steroids for COPD (chronic obstructive pulmonary disease). She started to put on weight and also had pads of fat forming on her upper back and she developed osteoporosis. She was also told she was at risk of diabetes. She decided to get off the steroids and told her doctor she would not take them any more. She gradually weaned herself off them. She has now lost weight and the pads of fat. She is just taking some calcium supplements to try to keep the osteoporosis under control.
Thinking of you.
Sylvia xxxx
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Hey everyone,
I am on this in support of my mother whom is 48 and just was diagnosed with stage 3 TNBC. She has a PET scan on Tuesday and we are waiting to hear from Rochester. It is a scary experience and the not knowing what is going to happen is adding a lot of stress. The cancer has spread to lymph nodes. She can feel swollen ones all up her neck and she has been complaining about back pain, which I read is not a good sign. This is a hard thing to grasp. We just started doing tests this month and now she is already at stage 3. This was very sudden and a shock to us all. I have loved reading all of these success stories, struggles, and support. It has given me hope that there will be a future ahead of my mom. I plan to keep updating her status in this group. I can see that all of you wonderful individuals have some great insight. God bless you all.
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TDaughter, so very wonderful for you to post. We know how very scary it all is, but please know that a good thing about triple neg bc is that it is very responsive to chemo...does she have a treatment plan yet? Please do update us and give her all my best, all good wishes and prayers
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Stupidboobs praying that all your test result are clear. Let us know how you are doing from time to time. I know you struggle with some of the news on here but its good to her from you when you are able.
Aggiemegs hoping you feel better and the nausea has settled now. Hopefully you may not get it with your next infusion. I also had taste issues. Nothing was how I remembered eating it and sometimes it didn't seem worth eating but you must try and have something or you will get nausea. Sending warm hugs for a better round next time.
Kath how are you doing. Glad you get some humour from my posts. A good laugh is what we all need going through this hell.
BanR yes its a long time since we heard from Fighter. I hope she is doing well and is just enjoying life.
Shari its good to take a break from the boards to recharge your own batteries and try to live normally. I'm sure that weight will melt away with the exercise you are doing. Big hugs to you.
Shorfi yep we are all warriors on here and brave ones at that.
Arlene how are you doing and are you still exercising. I think about it now and again!!!!! but that's as far as I get.
TerrifiedDa we know you are scared as we are but Meadow is right TNBC does respond well to chemo. I also had it in the nodes, four of them, and I'm coming up for four years free now. I am also stage 3a so don't give up, see what the PET scan comes back with and then a plan will be formed for your dear mum. Sending big warm hugs to you and your mum.
Today its spring. We have had sunshine, rain, thunder storm and now its sunshine again. I badly need some warm weather but its alluding me.
Keep well ladies and laugh often.
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Meadow,
As of right now we do not have plan. We are waiting for a call from Mayo and then waiting to hear from her doctors here. It is a waiting game that has brought a lot of stress on us all. We are hoping by the end of this week that we will have a better idea of what to do.
Cocker_Spaniel and Meadow, I have heard that chemo is very responsive to TN and that makes me happy. It is scary knowing that certain treatments won't work, but chemo is a big and important step, that I am hoping my mother starts soon.
I just want to thank all of you wonderful ladies for all the support and prayers. I will be back soon with updates.
Have a wonderful day.
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Tdaughter
You came to the right place. Everyone here is so helpful. Some of us are fairly new, and some have been here a while. And that gives me strength! There is light at the end of the tunnel.
Cocker, I am trying to get to the gym at least twice a week, I really should try harder. But at least I am making it thru my Spin classes without falling off my bike. Lol. And another first for me. I have ditched the wigs. I know I look very different, but it feels good.
Sending strength and hugs,
Arlene
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