Wink333

Shiny,

Sorry I haven't written in so long. Kids back in school, parents doing poorly, working nearly full time, daughter on computer nearly all evening, etc.  I know by now you have the results of the biopsy on that enlarged lymph node. I hope and pray it was nothing. I imagine you have posted results somewhere else but haven't found it. Was what the verdict? Hoping good news!

Are your children still in school? Guess you only have short vacations and not a long summer one?  Ours seemed really short. 

Hope to hear from you soon and I will try to check more often. I've got to go now. Husband in cleaning mood which means everyone else has to jump to his commands!

Hoping you got good results!

Hugs,

Wink 

Hello,

I had 4 dose dense treatments of Taxol and I was given oral steroids to take the evening before treatment. I also received steroids in the IV so I did gain weight during Taxol.  I had all ready been on nuelasta so I also started taking it the first treatment of Taxol but had to switch to nuepogen (which I didn't like as well, one trip, one shot better that 5 trips, 5 shots, and the nuelasta brought white count up better) because nuelasta caused me to run a fever for 2 weeks. I never really had much bone pain on any of my treatments but have had lots this year after. I bet you will feel up to going to watch your son. You can always leave right after he performs. 

I watched my son in marching band during treatment and I went up and down the stands like an 80 year old with lots of resting and had to wear hats to keep my wig from blowing up and looking bad, but I made it. Take lots of cushions to sit on too as those benches are bad when you aren't fighting bc! 

Good luck with treatment! You are in my prayers. 

Okay ladies, all this talk about low expressor's is scaring me. My report doesn't give % of expression. All it says is negative. How do we find out if we were truly negative or do they only put % when there is any at all.  I guess I should call my onc and get her to contact the location that did my path report, is that right? Does anyone know how a cancer can change receptors? Has it really changed or is it a new cancer? Is TN like a bacteria or virus that mutates to survive after exposure to antibiotics or drugs? Has anyone had a health professional explain receptor changes?

Thanks for any info,

Wink

Shiny,

Hope you get rested up soon. You are just getting out of school and we start back Aug 13th. Our summer is going way too fast. Son had great time, in band camp now then home for local band camp. Daughter in soccer practice 4 days a week now. Busy, Busy moms we are.

Thanks for the vibes, sending back to you.  Hope you get your to do list done soon and can get caught up on rest.

Hope the pains continue to get better. Can't believe the hormones are back. Wonder what your docs say about that?

Take care and stop in when you can.

Wink

Roxy,

Oncs need to learn to be honest with us but need to be sure and give us all the best treatment options out there, then make sure they give us extremely close follow up testing. I agree with everyone else who told you that we can always be that 1 out of 100 that doesn't relapse or get mets. I fight constantly with myself to remember that my glass is half full, not half empty. I tell myself that I've had my bad luck and it's my time for some good luck. I am not good at waiting and I think the unknown is the hardest for all of us.  We all need to keep positive so that we enjoy to the fullest the NED time. No one knows for sure if that NED will be short lived or 20 - 25 years long. We just have to make it the best time of our lives whether it is short or long.

Saying all that I was wondering if anyone can tell me what Ki67 and P53 are? I am not familiar with these although it appears to be from pathology reports. Is this something new? I don't believe that I had any of this on my path reports? Thanks! 

Hang in there Roxy.

Wink   

Shiny,

I'm glad you are enjoying being the hands on mum again. It is nice to be able to do that. Praying for rest for you so you can finalize plans and mostly enjoy the parties with the kids. I bet they are sooooo excited! It's hard to believe you are still in school. Tell the kids that people in New Mexico are thinking of them and wishing them a Great Big Happy Birthday!

Congrats on your 1 yr anniversary! Yes, I just had my one year in March. Your right, it is nice to get one of the high risk years out of the way.

Walked 10 miles with my son this morning and thought I might have to send him ahead and come back (illegally) with the car to pick me up. We have done 7 miles and another 10 which were not too hard for me (he carries a 30lb pack but I just carry light day pack). Today I hurt so bad. I was sooo glad to get back to the house. Sticking to 2 miles from now on. Wondering if I will be able to get out of bed tomorrow! Bryan leaves for camp this Friday so he better be in shape (just wish we had some hills to climb - his flat land muscles are ready but bet his climbing muscles will hurt!) Just hoping he has fun - he won't know anyone there and he is very shy. Good experience for him but I will worry the whole 2 weeks he is gone. They are never too old to worry about.

Tonya (daughter) is feeling much better but hasn't made it to soccer practice yet and will be so out of shape compared to other girls. Come July she has to go so think we will just let her recuperate until then. Thanks for asking about her.

Hoping your ar is better. I started taking joint supplement again (glucosamine and Chondroitin). Hoping it helps and doesn't hurt any. Had to try something to feel good enough to help son get ready for trip. Taking lots of ibuprofen too. Onc didn't act like she would give me anything to help and see BS this Thursday. Took things into my own hands.

Have you had any skin reactions after chemo? I am having tiny, clear blisters on arms and legs this summer. Never had b4 so wondering if this is another gift of taxol.

Too long I know. Sorry! Better go now! Hope you have AWESOME PARTIES!

Hugs,Wink

Faith101,

I too am trip neg and had/have felt extreme tiredness. I finished rads 11/07 so I am not as far out as you. Long story short, finally got a CT scan that was clean, I suddenly felt much better physically. Still some issues but not near what it was. Didn't think I was depressed but obviously worry was one big problem for me. Now having to walk a ton to help my son get ready for 2 week walking boy scout camp. Physically exhausted but amazingly feel better than before. Exercise helps me get more rest. Wondering what will happen while I worry about my son and he's not here to walk with.

Sorry, so long. Just letting you know my trouble is/was worry and lack of proper exercise. Last thing I really feel like doing is walking but it is so much less tiring than house work or watching tv.

Hugs, hope you feel better soon. Push for scans, the words nausea and discomfort in abdomen seem to be magic scan words for chest, abdomen and pelvis scans.

Wink 

Fitz, hugs, prayers, positive vibes, all being sent your way! Hang in there. We are all sending extra prayers for it to be nothing at all.

Wink

Nancy,

I am so sorry to hear that you have the met in your hip. Sending hugs, positive vibes and prayers your way. I have read many postings from ladies here that have done so well with bone mets (all types of mets actually)! I hope you can relax and enjoy your summer!

mthomp2020, I'm sorry for your troubles too but so glad to hear from you that you feel taxol can aggravate preexisting arthritis. I too had taxol but didn't have any problems while taking it. I was 6 months out from taxol when my joints started up. I had minimal problems before but now much joint pain off and on. My docs, of course, tell me that don't think it is taxol, not documented to cause pain. She does say that no one really knows long term effects. Anyway, thank you for the information. It helps.

To both of you, hugs, prayers and good wishes!

Wink   

Shiny,

Sorry to hear that your visit will not bring you rest but sounds like more work to help mil after her surgery,(hoping she is doing well though) hubby working, and kids. Also, sorry to hear about you not feeling well. Chest cold? Hope the doctor can fix you up. Guess you are back now or tomorrow from the countryside. I sure hope you feel better and are able to enjoy some of your visit and get some rest.

I'm sorry to hear about the lasting se from the taxotere. I have been lucky as I haven't had a lot of lasting neuropathy from the taxol.

I don't think I would ever lose weight if I couldn't walk. Not doing very well with walking. Only gained 1 1/2 in 3 days at farm but spent over night with my folks and shopped in "big city" and gained 2 lbs. What's up with that? Hoping it's "water weight" and comes off soon. I lose 3 lbs. and seem to gain 4 -5. UGH! Weight went on so easily and off so hard. One of my fears is that I will have a recurrence b4 I lose the first treatment weight then more will just come on from next treatment. I can picture me as big as a house. I had lost 20 right before I was dx then gained it and more back. 

My son and I were supposed to be walking 6 miles this morning around 6 am (b4 heat starts) but we got in from Lubbock, Tx (the "big city" ha) about 11pm last night and the kids stayed up until I don't know when. We decided we might have to go early b4 church tomorrow. Supposed to be 97 here tomorrow and over 100 in some local places tomorrow so will definitely have to go early am to beat the heat. It was 100 in Lubbock yesterday. Thinking this summer the heat and drought is not letting up. Thursday it looked like the "dust bowl" again with the heat, wind and blowing dust. Very depressing.

Better go now, I could visit forever.  Hoping you are feeling better. Hugs and best wishes! Oh yes, my back is killing me from walking but joints are a bit better.

Wink