Calling all TNs
Comments
-
Hi All
Its been a while since my last post! Life has been quite manic with a new born and a toddler and of course a darling wife undergoing chemo!
I'm pleased to say that my wife has now finished chemo. She completed four rounds of FEC (3 weeks cycles) and 12 weekly rounds on Taxol with a 4 week break to give birth. She tested negative for mutations in BRCA 1 and has a variant in BRCA 2 that is not pathogenic and was not the cause of her cancer. So that's it. Treatment is over and done with, she will have a reconstruction at some stage, but for now the doctors consider her to be NED and she has made the transition from breast cancer patient to breast cancer survivor. God only knows what the future holds now, but we are going to take each day as it comes and try to put the fears out of our minds and enjoy our young family.
I personally want to thank everyone on these boards that has offered words of love and support. Its amazing how complete strangers in cyberspace have helped so much with their kinds words. I'm going to try and post when I can and keep you lovely ladies (and gents) up-to-date with the latest research and offer my own support where I can.
Having just watched my wife go through something at the age of 33 that I never imagined would happen has been hard, but she has got through this and so will those of you going through this now. Stay strong and don't let it beat you.
Lots and lots of love, hugs and prayers to you of all. My thoughts are with all of you.
Tom
xxxx
0 -
Oddswiner, I meant to reply to your other post! That is great the Cisplatin is working you lucked out! As I told you I got the Taxol arm and they are actually taking me out of the trial.... My tumor hasn't grown but hasn't shrunk is 9 weeks
I start AC on Thursday... Then I'll have surgery. Hoping the taxol did something and the AC will finish it off and show some shrinkage... It's scary.
My MO said if I don't have a great response we will use the Cisplatin.
It's really overwhelming and I am just hoping for the best outcome possible.
0 -
Oddswinner. We made a deal when she was diagnosed. I would take care of the research, the doctor hunting, the insurance, the administrative "stuff"...and she would concentrate on healing and getting better. That's how I came to this thread instead of my wife Kathy (she hates computers!) . In my mind I got the easy job! I've kept my end of the bargain...and so has she! So far the plan is working! This group has accepted me into the fold despite the fact that I am not the patient and not a woman. I have learned so much from these amazing ladies!
0 -
LillieRose, I hope that what you're on works and actually after surgery, they will be putting me on taxol or AC, not sure yet to kill anything left over, then rads. If it doesn't work for you, I hope they do the Cisplatin, but I will tell you there are side effects, nausea for at least a week, I now have constant ringing in my ears and my pinkies and some of my feet are numb, hair is thinning, and other little things, but the shrinkage is worth it all. Good luck, will keep you in my prayers.
0 -
It's amazing what you are doing, yes she has the hard part, but you're sharing it all and that is wonderful, there are a lot of men out there that can't handle it, or in my hubby's defensive, after 3 years of back surgeries (3 in 3 years), he has a problem with anxiety, so we had to work on that too, in order for him to help me. I'm the computer geek, and the research nut, so I do it. But he takes care of the house, the dog and hugs or an ear when I need it. Keep up the good work!
0 -
Lilly, I had taxol then ac like you. Taxol didn't seem to do anything for me after the first 6 weeks, but AC really did a number on my tumor. I didn't get a pCR because I had a tiny amount of cancer left in two lymph nodes at the time of surgery after chemo, but there was nothing left of the 2.5 cm tumor I had in my breast. I hope the AC works well for you....I think there is a good chance it will.
0 -
omg! Thank you so much simplelife! I have not been able to find anyone who did taxol first to ask advice from! That really eased my mind a lot! I can't thank you enough!
This whole thing has been hard enough with a new baby and then this taxol crap... I have had my limit so your reassurance is much appreciated!
Did your tumor shrink a little with taxol? I've had like 6mm but it's been 8 infusions now and my MO wants more so I'm moving to AC. She said I can always finish the taxol after surgery if they feel it's beneficial.
0 -
thanks oddwinner! I'm hoping the AC kicks butt and I'm done after this... I have zero side effects with the taxol! I feel awesome actually... So maybe that's the reason I have no shrinkage... I'm sorry the Cisplatin is tough but I'll take anything to kill the cancer! Rest up and stay healthy! I'm at DF on Thursdays
maybe I'll see you!0 -
Am in TN working on "Hunter Haus"- no service there yet, and cabin we are staying in is limited. Enjoying Gods beauty, and working on the house.
Simple, that is simply wonderful, glorious news, and like many others said, I like the sound of FAT
Hugs to all fellow TN sisters
Kath (whose hair is still coming in chemo curly)
0 -
I did it. My hair started to fall out, caused my scalp to hurt, so yesterday I got a buzz. Feels so much better now. A local natural soap/lotion store helped me come up with a oil infusion to put on my scalp to help calm it. Working great!
My son arrives Sunday from Virginia. He will be here for 10 days. I'm excited to see him!
0 -
Angel - you go girl! It feels so much better once it's shaved. I miss my hair now (not used to having actual beads of sweat on my scalp) but I must say getting ready in the morning is a breeze!!!
0 -
Yes, that clinical trial that was posted a few days ago looks very promising. Now I want to try and get my copper levels tested and maybe on that medication.Might email my MO later this week and see what she thinks.0 -
Angel=You are too pretty for words. Have fun with your son.
0 -
Angel: Love your picture! Sending you hugs from one Navy mom to another. Enjoy your visit with your son and please thank him for his service for me.
My boy has been depolyed since January and is not due back in the states till September. UGH!!! Waiting is so hard.
MSMath: What branch is your guy going into? I am holding you close to my heart as you watch him leave. Its been over 6 years years for mine. Truly the best thing he could have done for himself. He has grown into a strong, smart confident man.
Good morning to all...hoping everyone has a peaceful day.
0 -
NavyMom my son is going into the Army. Trying hard to soak in these last few weeks with him. I know it is the best thing for him. Just hard to say goodbye to my little boy knowing the next time I see him he will be a man. I'm hoping to have some hair growing back by then. My hair loss was hardest on him.
0 -
LillieRose, I'm glad I could ease your mind some. My tumor did shrink by about 50% on taxol, but it did all the shrinking in the first six weeks. The second six weeks, it just stayed the same size. On AC mine went down the first week, but then went back up to the same size it had been for six weeks, On the second and third and fourth infusions, it went down a little each infusion and didn't come back up again. A week after the last AC infusion, I couldn't feel it at all. I hope AC works as well for you. It made me very tired, but I actually asked my MO if I could have a fifth infusion because I could tell it was working. She said "no" of course, but I figure that it didn't hurt to ask!
Angel, congrats on taking the plunge and shaving your head. Isn't it such a strange feeling to see yourself without hair for the first time? You look great. I'm sure you are already discovering the advantages of being hairless.
Wishing everyone in treatment an easy time of it.
0 -
I'm doing great as far as attitude, but the stamina is much slower to return after AC2. Next chemo, AC3, will be on the 16th.
I'm starting to notice that my memory is sluggish at times. Figured it was the start of chemo brain.
For those interested, I am happy to share a small bottle of my oil mix for my scalp. It's hemp oil with nettle extract and calendula extract. It has almost no smell and I felt less discomfort as soon as I applied it. I bet it would work on dry hands and feet too. The nettle helps calm irritated skin, and the others provide moisturizing. Let me know if anyone is interested.
Navymom, my son will be 30 next month and he signed up for 8 years, with almost two done now. I haven't seen him since he shipped off to his first assignment last July. He wants to be a lifer! I'm so proud of him for making this choice.
0 -
Just like your name, you look like an Angel.
0 -
Hi Friends, I lurk a lot, seldom post. I wish I had something to contribute, but I'm just rumbling around in my own little world.
I'm about to fire my 3rd oncologist. And they all deserved it too. But now I've about run out of options in the town where they practice. I think I'm still NED, but I don't feel comfortable with their assessments. So here is my question: I've heard and read about dogs sniffing people who might have cancer. Do any of you know about this and where I might find such dog? I'm serious. Looking for a new oncologist at UCLA, about a 5 hour drive from here.
Wishing everyone best wishes, no matter your stage and treatments. Jan
0 -
Congratulations, fat necrosis is great to hear
0 -
I am 62 and almost made it to 5 year mark for HER-2 positive. I am recently diagnosed with triple negative. The right breast was removed in 2010. They plan to start chemo soon. Does anyone take L-Lycine? I took it before and don't remember the daily dosage. Can anyone help me with this?
0 -
Jan69 great to hear from you again. Here I was thinking you had that great book, lazing in your shady glen and doing absolutely nothing and what do I find, you wanting a dog to sniff you lol. Seriously Jan are you having problems and why have you fired all of your oncologists? I have heard of dogs and cats being able to tell if a person has cancer but I wouldn't know how to go about finding such an animal or whether it is really true. Just joking, but I suppose you could try customs or border control, they have great sniffer dogs lol. Seriously, do you have a breast cancer organisation in your mountain town who may be able to help.
0 -
Oh Cocker, I do have a great book, but I laze in my indoor recliner because it is too hot for human habitat on my mountain. For the last week temp has been around a 100F (which means super hot in C). And of course we are in a 4 year drought. We've lost all but 2 of our 100 year old ponderosa pine trees. But yes, I'd like a dog to come and sniff me up. My first onc was too tired to hold her head up, 2nd had no compassion or personality, made me cry, 3rd doesn't seem to know much about breast cancer and he and #2 onc. are getting ready to join their practices. I want a doctor to pay attention to me and know what she/he is doing. I hadn't thought about border control dogs. We've got those here in California. Come to think of it, when I was teaching the sheriff would bring in drug sniffing dogs and sniff the kids' backpacks. Humm...... But as far as I know, I'm still NED, but I need a competent doctor to watch over me. There are no doctors in my tiny little mountain town, and nearby bigger town has only 3 primary care docs and a sorta emergency department. Good idea to check with some cancer organization in the big town. Really just want a dog to sniff me every month or 2.
So how are YOU? Little dog still chewing everything? Hubby still cooking? Daughters treating you right? I miss all the banter we used to have on this thread.
I'll let you know about my dog search. Jan
0 -
Hi, Jan69. It's been quite a while since I have posted on here too. I am 3 years out from my last chemo treatment and, so far, so good. Just before I got the results of my biopsy, a "Cancer Dog" organization was doing an exhibition near my home in Ottawa, Ontario, Canada. So I went and had it done. What they do is have you breathe into a mask for a minute or so and then they seal it up in a jar or bag. Later on, they have the specially trained dogs go by all of the now unsealed jars and they will stop at the ones where they detect cancer. The dogs DID identify my sample as positive. I think the accuracy depends on how well trained the dogs have been. You should do an internet search for "cancer dogs" - I'm sure there are some in California. It may even be possible to have a kit sent to you that you could complete and send in. Let us know what you find out. Good Luck.
Doreen
0 -
Wow Jan Dormac has the answer. How about giving that a try, worth a shot. The warmth of your sun is very appealing to me at the moment as we are in winter and it's so darn cold but sorry you lost your trees and that you have a drought. Yes we did have some laughs didn't we, I miss them too, they made my day. The old feller is still cooking, my girls are still looking after me and Chloe, well she has grown up a lot but still has her moments. Next door to us is the entrance to a large park. She sits on the back of the chair and looks out the window and as soon as she see's anyone taking their dog for a walk she starts, she sounds like a deranged chicken. Then because she knows the person will be taking the dog to the park she dashes across the dining room and lounge, out the back door and races to the fence where there is a little tiny gap and again starts yelling. She must put the fear of God up them all. I've threatened so many times (as it's embarrassing) to take her down the SPCA but when she is not crowing like some deranged animal she is so bloody sweet. Right now her head is in my lap and she is looking at me so adoringly so I will wait until tomorrow to take her lol. Just couldn't do without her. I know how you feel re a recurrence as the longer I go the more I wonder if anything has come back and I don't know about it yet but remember my friend you are NED and are going to stay that way. Keep in touch cause I miss you and enjoy that good book.
DorMac three years out know, keep going girl you are doing well. Sometimes it seems like cancer was all of a dream now but then I get a little pain somewhere and I am back to thinking the "what ifs". We need to laugh more and distress ourselves. I gave up my full time job as I was getting tired at the end of the week and will now look for a little part time one. It will be nice to have more time for my cake making and sugar flowers. Keep well my friend and come on and let us know how you are from time to time.
0 -
Doreen Wow, what a feeling that must have been to sniff out your positive cancer. I'll look up cats, too. I'm so isolated here that my mind just goes wild with any subject. Lately it's been cancer all the time. Thanks so much.
Cocker Annie, And now you are unemployed? After you struggled to work with your poor hands? So glad you are able to kick back a bit and have more time with your cakes. It reminded me that while expecting my first child I took a comprehensive cake decorating class. For dd's first birthday, my old feller took over the cake and made such a beautiful cake. No lessons for him. So now everybody goes to him for their cakes. I hope you find the perfect little job.
Now I'll look for some place that wants me to breathe into a jar! Won't my kids be laughing!
Best wishes for our health and hopes that our kids don't inherent this dreadful disease. Jan
0 -
SureCat, I'm sorry about your recent diagnosis. Do you know what your treatment plan will be yet? Wishing you the best.
0 -
JAN here ya go! Give em a call! http://www.dogsdetectcancer.org/
0 -
DorMac, Cocker, ALH, Thanks for all your suggestions. I've left messages at 2 organizations, They don't seem to be very active; I think it might be because of the lack of funding. I'll be sure to let everyone know what I learn. Most of the google citations are periodical articles about the dogs. The cat sniffers all seem to be articles, too. I'll keep digging each day, and I'll be waiting to hear from the research foundations. This should all be interesting. Jan
0 -
OMG! I just received a reply from the In Situ organization and it is loaded with information. They are about 18 months away from being able to screen patients with their dogs. The method will be that they send a kit with instructions and the kit is mailed back to UCDavis. It will be low cost. Most interesting to me is she cautioned me to not believe any organization not connected with a university. She says they would be frauds since it takes so many years, so many dogs, and so much training that independent groups can't do it. She said she will keep me informed with information as it becomes available. So here we go. Jan
0
