2017 Diagnosed-- A Place To Share "Whats Next"
Comments
-
Ahhh, the ‘ol you could get hit by a bus tomorrow crap. The difference is that those of us diagnosed with BC are being pushed out into traffic every day
0 -
When my MO told me last week that he would see me in 6 months I almost started crying, not because I was happy but because I didn't want to stop seeing him. The fear is already setting in...what if this comes back? I have been so busy fighting this for the last year, I am not sure what waiting for 6 months looks like. So, I enrolled in a clinical trial, waiting to see if I am approved.
0 -
Thanks for explaining the acronyms! I am sorry to hear about your DH - it was probably all the stress.
VL22 - well said!
OCDAmy - even though I have had such an up and down relationship with my MO it is like they are the one that is steering the boat in all this turmoil of cancer. Now I just feel like it is the waiting game of finding another lump, pain or coughing, or bleeding to indicate metastasis all by myself. What if I don't catch it in time?
0 -
I think we have to learn to see the glass half full since the majority of early stage BC patients do not see a recurrence or metastasis in their lives. It seems perfectly normal to find getting to that feeling is not just like flipping a switch. We have been thru hell during our treatments and we read everyday about someone with a recurrence or metastasis. In my case, doctors have twice ordered a PET scan in 2017 which of course makes me feel like they expect to find cancer elsewhere. Sigh. I keep repeating to myself “no more cancer” or “cancer is gone” hoping to get that thought into my subconscious. I want to learn to be aware of new symptoms, should they occur, but at the same time enjoy each NED day. We sure have to learn new balancing skills, first with side effects then with life in general. I am so THANKFUL for each of you!!
0 -
Ocdamy- that is one of my reasons for asking for the clinical trial..frequent monitoring. It was on the plus side of the trial.
Dodgergirl I try and tell myself the same thing and it is hard. I called in to work/school today. Haven't done that since back in Sept.during radiation. It makes me feel bad. Sore throat and run down but no fever. I beat myself up over it, most likely because I ended up taking half the year off for treatments. Oh well just rambling.
Dodgergirl thinking of you this month for surgery.0 -
Annbee— thanks for the well wishes. Hope your sore throat is short lived
0 -
roaming-star: i am highly ER PR positive and had chemo as well. I asked my MO re: chemo and high hormone positive; she said that yes that it has a higher chance of not being AS EFFECTIVE as in TNBC but that it IS effective in most, otherwise they wouldn't waste tax payers money on it. So that help to reassure me that it was a good idea for me to try it. However she said it would only get me another 6% survival chance for 15 yrs. I would have taken it at 2% haha. Tamoxifin should help by 10% she said.
0 -
I think the thing that bothers me the most is when people ask if it's gone now. I really don't know what to say. Ya, I sure hope it's gone. The potential for Cancer is in all of us and whether or not it gets activated is anyone's guess. There is no cure for cancer. We learn to live with it. Before we had it we didn't think much about it. The problem for us is that we now know we had it and will it come back. I hope as we get further along the nagging in the back of my mind will eventually diminish or perhaps even go away. My friend who's had it twice says you don't think about it. But how do I not think about it. I have scars that I see every day to remind me. I still don't have my hair back. My body is still healing.
0 -
Roaming Star, Terribly sorry for all your trials thru this BC journey. I had a a lumpectomy first. 6/7 of my nodes were cancerous. They got me on chemo right away, then at the end of 4 months of that, they removed all axillary nodes and 5/16 were still cancerous. (I just had to show the total in my profile, as I couldn't figure out to show the nodes separately). So, I don't know what really to think of that, but I am now in the throws of radiation. I just take it a day at a time. People, even family, can mean well but say all the wrong things. It's not an easy journey no matter your stage or treatment plan, but I have met so many women who have had great longevity even with all the things I have gone through. Sounds like you have an unusually amount of high stress, so make sure that you take care of yourself first. (Remember what they tell you when you fly...to put the oxygen on yourself first, if you are helping a child or other...)
0 -
OMG, pink, that question, "How is it going?" Especially from casual acquaintances. I HATE that question. I end up saying nothing meaningful at all.
0 -
Thank you for the encouragement:-)
Tpralph - that is interesting about the increase in percentage. I know that the stats say if you get chemo that you live longer - but sometimes I wonder in those big studies that the little nuances of individual cancer differences don't get represented and everything justs gets lumped together.
KimPossible818 I can't believe you had so many positive lymph nodes. I've read that high hormone positive BC can be treated with hormone therapy neoadjuvantly really well, but I never hear of anyone having been treated with this first to shrink the cancer.
Pink_is_my_colour - I two hope that as I move farther away from this treatment that it will become less powerful presence in my life. I know I will and I am still just trying to handle treatment and figure out what the heck just happened to me and where do I go from here... That's why this topic is so great to process the diagnosis, treatment and the "now what".
0 -
I will be finishing chemo on Feb 6. I will be having a BMX on Feb 27, then radiation and anti hormone thpy, AI. Even though chemo is almost over I still have a long road ahead. About the Everolimus or PALLAS trial. I understand the upside since I am high risk it would be nice to have the benefit of this possible drug combo but I can’t help but worry what if the everolimus compromises the effectiveness of the AI? Has anyone addressed this with your MO?
0 -
DodgersGirl: I see you had cording. How did you get rid of it or did it just go away on it's own. Mine started during radiation, then went away, but I started exercising the upper body with stretches and now it's back worse than before.
0 -
pink is my colour—- I went to a physical therapist for a couple of months. She massaged also BC the cording and SLOWLY but surely the cording “popped” a few cords at a time. I was concerned that my cording wasn’t going to go away as it took 4 months
I always made sure to stretch and reach with affected arm. I also laid in bed and stretched my arm over my head and kept it there for 10 mins at a time. And a held a cane with both arms, parallel to the floor and stretched it over my head allowing my non-surgery side to stretch my surgery side as the non-surgery side could stretch the cane out farther over my head.
I hope you find what works for you
0 -
ItsStillMe— The SWOG S1207 Trial is to see if Everolimus plus AI is more effective than just AI. I haven’t heard of the Everolimus impacting the functionality of the AI in a negative way. Please post info if you have read anything about Everolimus negatively impacting A
0 -
Dodgers Girl - No, I haven’t read that anywhere. This is just a thought I’ve had (during my sleepless hot flashes induced nights). Do you know if the are any results the Stage 1 or 2 Trials
0 -
pink is my color, I had cording after surgery too. It hurts! I went to pt and it worked miracles. I finished rads in October and just last week was diagnosed with cording again - but now it is under my breast. My ribs are so tender and it hurts to getfull extention. Starting pt again next week. It's weird how it comes and goes for some people. I hope you can work it out and/or get some pt. It is not fun!
0 -
Thanks for the advice on the cording. During radiation is when the cording started. The cording started after I started the exercises. I stopped the exercises after radiation finished and the cording went away. I started the exercises again on advice from the nurse practitioner and now the cording is back worse than before. I was wondering if it was because I had started the exercises again? My whole left side is sore where I had lymph node surgery. Right side is okay. I also have cording in my arm from the chemo infusions which they said would go away eventually. It's now four months later and it still looks the same.
0 -
pink can you getphysical therapy? It really worked great for me the first time. (And hopefully next week). I had cording in my armpit and down my arm after surgery. That thank goodness has nit returned. The new cording is definitely in the Radiation field though.
0 -
Moth - everyone is different and has different reactions to treatments. I work fulltime (desk job/project manager). I did not work the days that I received chemo but did work the other days. Week of chemo was tiring, felt better the next week and almost normal the 3rd week, then repeat. I did travel for work during the 2nd or 3rd week. I worked every day during radiation but did not travel during those 7 weeks. I had pain, manageable but increasing, every day during radiation. Keep up exercise as much as you can during all phases of treatment.
0 -
Runrcrb - thx for sharing your experience! Yes, I've read through several treatment threads and it certainly varies how people respond. I'm encouraged by your positive reports though!
0 -
LegoMaster225– I started with cording in armpit down to my elbow. PT seems to have taken care of most of that. After rads, I, too, had cording on chest. Pretty sore to touch or stretch. PT worked on that after rads. Seems better but still tender to touch the breast area in places.
0 -
I only had one occurance of cording. It was getting bad too. It was right before chemo was starting. I had called the PT that the RO gave me and was told that I needed a new RX because it was older than 30 days. I went had my port put in and my cording was gone. I can only think that when I was under they moved my arm and broke it. MO said it won’t come back now. Cording is awful.
0 -
ItsStillMe—I don’t know if results have been posted red the first two clinical trials. I was thinking I had read something but if I did, my short term memory lost it.
0 -
Currently I am doing PT for mobility and cording. I had a 10.5 inch incision so needed PT. I have progressed well and also do exercises on my own. I start rads tomorrow but my PT will continue to work with me while I do rads. She is an expert in PT for women going through bc. So happy she is helping me.
0 -
roaming- I often wonder if I should have PT. I have good range of motion. The only time I have pain is if I do any heavy lifting. Like when I was setting up my classroom.
0 -
I don't think it could hurt to have a professional look at your range of motion and the pain you are experiencing. They may know exactly why you are experiencing pain and get you to your optimum again. For me the treatments are hell enough. I just want to be able to enjoy whatever life and time I have left with the best that I can give it. I am thinking about doing some backbacking again:-) once this is all over.
0 -
Thanks DodgersGirl. Looks like we have similar experiences. I swear I thought my ribs were broken. They hurt just to touch them under my breast. I even got X-rays because I was sure my rib was fractured. X-rays are normal. I. Glad it worked well for you. Hopefully I will have a similar positive response
0 -
roaming- good idea. Thanks for the suggestion and I will look into it.
I am learning a lot here.
0 -
Cording doesn't seem as bad today and pain is mostly gone. I've been massaging the area and applying heat. Not sure if that's making a difference or not. I talked to the nurse practitioner today about it and she thinks it's a good idea for physio to check it out anyway. Cording seems to come and go I guess depending on what I'm doing.
I've got a Rx for physio at the Cancer center. Just waiting for them to call. I figure it's best to go to the physio at the Cancer Center because they likely know how to deal with it rather than a private physio. Also, it'll be free!
Good news, I can actually see some hair on my head now.
I'm so glad I have the support of this website. Otherwise I don't know how I would have made it through this past year. Thank you from the bottom of my heart.
0
