Dis Breast Cancer Survivors Part III - GAGWTA!

[jackskellingtonsgirl]

GAGWTA, Ladies!

Many, many good thoughts for you Cheryl & Lisa!!!

 

[CherylDan]

Hi all, thanks for all the well wishes. Still haven't heard from the hospital yet, so don't know when I'm going for the scan. I'm feeling somewhat less freaked out about it today, or trying to anyway. Anybody have any experience with elevated markers?

Lisa, so sorry to hear that things are not going well. Seems like when it rains, it pours. Add me to the list of all the good thoughts headed your way.

GAGWTA!!!

 

[KJ Luvs Pluto]

Lisa - I'm so sorry you are having to go through this. I hope you hear good results from the biopsy.

Cheryl - Waiting is so hard. Sorry I can't be of any help or encouragement for you.

You are both in my thoughts.

 

[wdw4us2]

Thanks for all of your good wishes. I knew I would feel better after reading your posts!

Cheryl - I don't have any personal experience with the elevated markers, only what I have heard other patients discussing at the Oncologist's office. Sometimes the news is not that dire - hopefully, this will be the case for you.

I went for a two mile walk this morning. I have learned in the past that doing nothing during recovery makes returning to my usual exercise routine incredibly hard. I actually feel better when I'm moving around. I'm trying to be off the pain meds by tomorrow, but I think I'll still need one to be able to get some sleep tonight.

 

[snappy]

Although I was tested for 5 years, I never had elevated markers, Cheryl.

Lisa, glad you dove back into the exercise. What a good plan.

Is your daughter home yet? I understand you wanting to spare her but I doubt that she will overlook your concern. Too hard to hide.

Thinking of you both, Cheryl and Lisa.

 

[MinnieTink]

Just wanted to offer good thoughts and prayers for those who are awaiting results and those who have to make decisions on treatment.

 

[Pea-n-Me]

Anybody have any experience with elevated markers?

My first oncologist routinely tested, but when I got a new one, she didn't. At first I was kind of nervous not having them done, but she was pretty convincing they really weren't very accurate or helpful so I eventually let it go. I will say it did feel good each time I did have them tested to hear they were ok and for a while I missed it. (And to be honest, it's been so long now that I'd almost be afraid to have them done. ) I wish I had more to offer, but that's about it. I will reiterate our favorite saying, though, not to bleed until your shot. I know it's incredibly hard. We're here for you and keeping you and Lisa in our thoughts, and praying hard. I'm so sorry you both are going through this. It must be terrifying, but hopefully it will all turn out to be just a scare.

 

[luvmarypoppins]

Good morning ladies

Laurie - have a great trip. Maybe you could swim in the pool for some aqua pt

Lisa - I hope your pain is not too bad and that you have a good visit with your dd. I cant believe you walk 2 miles. I walk to the mailbox and get out of breath. I am pathetic.

Cheryl - I will be joining you in the reclast dept. They need to get it approved which will take about a month they say. Did they tell you the fracture score? They said mine is 3.1.

MinnieTink - hope your trip went well and that you could recharge and have some family time together.

Well my endo visit yest. went pretty well. The blood tests show undetectable cancer levels, so PTL for that. But the other stuff makes my head spin. I also got a resident who was very sweet along with my endo. My bp is not good so she is upping the dose of that, of course I need the reclast as I just mentioned, then she wants me to have another neck sono, said every 6 months, then I used to see her every 6 months and now she wants to change that to every 4 months. Also she wants me to see a cardiologist because of the high synthroid levels that cause palpatations and my family hx. I walked out of there with so many papers my head spins.

Dh leaves today and then he told me in a few weeks he will be going around the world again. That will be a long trip. He is waiting on the other guys to get their visas approved from the various countries. He will be training like 7 people to take his place. Ds18 got an e mail to call the second pt place for an interview, the lifeguard place callled him and wants him to work sun. afternoon and his bowling alley boss called and asked if he could work sat. Wow.

GTAGWTA. Enjoy your week end everyone. My thoughts and prayers are with you all.

 

[wdw4us2]

Laurie - DD daughter will be home around 3 pm and has a doctor's appointment at 4. We are going to visit my friend's son who is having ACL surgery on his knee today. Tomorrow, we're going to the movies and 4 o'clock Mass. She's leaving late Sunday morning to go back to school. I plan on keeping busy all weekend.

MaryAnn - Happy you got good news on your doctor visit. The only reason I'm walking 2 miles is because I'm not allowed back in the pool until Monday. I am not a fan of walking - particularly in the Florida heat! There's never a good time of day out there, maybe in November.

MinnieTink & Pea - Thanks for your thoughts and prayers.

Went on my 2 mile walk again. The pain has subsided quite a bit. Looking forward to DD's visit - she's always so entertaining. Have a great weekend everyone!

 

[CherylDan]

Lisa, sounds like you have a nice weekend planned with your DD, hope it helps with the waiting on your results. Distractions are a good thing!

maryann, I had my reclast infusion a few days ago. Took about two hours all together. Had it in the chemo room, wow was it weird being back in there again. Felt rather flu-ish the day after, with body aches and fever, but not really too bad. Mine had to be approved with insurance too, not sure why, maybe its an age thing? They did say that its usually older women who get it. Hmmm, no idea about the score thing...

Linda, it's always good to be reminded not to bleed until your shot! So easy to forget.

GAGWTA!!!

 

[CrabbyYetLovable]

Hey ladies, can I join you? I'm not a survivor... yet! Just diagnosed, so if there's another thread that would be more appropriate please let me know. I had some questions...

I'm 28, and have an almost 4 cm mass on my left breast, which has been diagnosed as invasive ductal carcinoma. The tumor is ER+/PR+, Her2/neu+, and BRCA negative. My first consult was a joke and told me that I would need a mastectomy without even doing any additional scans. My surgeon now (2nd opinion) is recommending me to have a lymph node biopsy, several scans to see if it has spread (already had breast mri and lymph node ultrasound which did not show any spreading), many rounds of chemo, then surgery, radiation, and then Tamoxifen for 5 years.

My chemo treatments will consist of 4 rounds of Adriamycin and Cytoxin, one round every two weeks. Then 12 rounds of Taxol and Herceptin, one round every week. Heres my question: I live about an hour and a half away from where my surgeon is located. The bulk of my treatments (where I would be going once a week for 12 weeks) are occurring in the middle of winter, in Northern, IL/Madison, WI. They'll be starting in the end of November and going to the end of February. Another thing I found out while reading the boards, is that I'll probably be having Neulasta while being on this dose-dense treatment regimen (called the office this afternoon to confirm). I had no idea that I would have to possibly go back to have these shots. I've only had one meeting with my oncologist so far, and I met with her and my surgeon for about an hour. We did not spend all of the time talking about chemo, so I feel as though I'm a little in the dark. Unsure of all the side effects, how long the chemo will take during the day, etc. The office is trying to see if I can either have the Neulasta shots in my hometown or give them to myself, but if my insurance doesn't cover them, administering the medication myself would be very expensive.

Ok, down to my real question: Should I have chemo done in my hometown to eliminate me driving back and forth to chemo in the dead of winter?? I'm worried that my counts would be down on a particular day and I would be unable to have treatment done that day, and would have to come back. We had talked about having treatment done in my hometown, and the doctors mentioned that it could be done, but they would prefer for me to have my treatments done up there, then have radiation done down here in my hometown. I think my surgeon's said "Give us these months, and then we'll set you free!" Ugh, maybe I just need to email/call them on Monday.

Any thoughts? Anyone gone through this intense regimen that could give me some advice?? Sorry for my first post being such a long one!

 

[Pea-n-Me]

Welcome, CYL. I'm sorry you're joining us, but glad you're here.

I had a somewhat similar regimen, minus the herceptin and fewer taxol treatments (4). My chemo center was an hour + from my home and I had to go there during the winter as well. It was tough. I didn't want a port and there were days I'd be so cold and exhausted from the ride in, my veins were collapsed and they had trouble getting a line in. But it worked out ok. I could have gone closer to home but that's where I felt the most comfortable, directly under the care of my oncologist and her team, who I chose out of many others. Both my chemo nurse and the NP on the team were BC survivors, so that made it feel real for me, like they truly understood what I was going through.

I think you need to go where you feel the most comfortable and you should take your team's concerns into consideration. They've probably got a lot of information under their belts about the other place, and want you with them for whatever reason. You will need someone to drive you to appts as some of the meds can make you drowsy and not feeling the greatest. Think of things you might like to do during infusions as it can be long and boring - and scary at times. Find out if you'll be alone in a single room or in a room with other people and think about which you'll prefer. Being with others can be a mixed bag. My DH drove me in and then went off exploring while I had my treatment alone in a treatment room. I enjoyed talking to staff (I'm a nurse so felt right at home there) and then I got lost in either my laptop or my meditations (that I taught myself how to do just for this experience, as I was admittedly pretty scared). Many of these medical practices are great with physical care but not always great with emotional care. If your place has anything available, consider taking advantage of it. Otherwise, consider seeking out support on your own. Someone I knew hooked me up with a fellow survivor in my town, and we became fast friends. She was instrumental in helping keep my anxiety in check as she was similar to me (with young kids), had a very serious case and was several years out when we met. I also joined a support center and that was very helpful as well.

As for the neulasta (and procrit) shots, I gave them to myself. I screwed up pretty bad, though - one day I walked out of the pharmacy with $32,000 worth of shots in a shopping bag. I felt like such crap that when I got home I shoved them in a drawer and forgot about them. A week or so later I went to use the first one and when I realized they should have been refrigerated!! Not too funny at the time, but seriously, you have to see the humor in this stuff in order to keep your sanity. At any rate, even if you choose the place an hour away, I'm sure they'll find a way to make it easy for you to get/take the shots somehow. Will you still be working? Do you have a family?

Please ask any other questions you can think of. There's a wide variety of experiences here. You sound like you're in good spirits, which is great. Oh, and btw, we've discussed this a while back, but most consider you a Survivor from the day you're diagnosed. So welcome, Survivor.

 

[MinnieTink]

Welcome Crabby! You sure have come to the right place. These ladies have been a huge source of information, guidance, and support during my mom's journey thru breast cancer. I'm sorry to hear of your diagnosis. You will be in my prayers while you fight and defeat your illness. I know everyone has different experiences but it helped me to hear what others said....

My mom is doing quite well. She had her 3rd of 4 chemo treatments yesterday. Almost done. For Crabby... She goes in @ 9:15 and has blood work. Starts the infusion around 10 and is done anywhere from 1:30-3. She does go back for a shot of newlasta the following day. She goes on Thursday and she feels ok til late Sun or Monday. Then not too good for about 3-4 days then starts perking up. By the following weekend she does much better. One thing that someone here stressed was that you should really hydrate before and during chemo. She didn't listen the first time and got quite dehydrated. The second time was not as bad because she did take the advice.

On a totally different note, my son turned 4 today! He's very excited tho yesterday he told me he didn't want to be 4 because then his favorite shirt and sunglasses won't fit anymore. So funny how kids think they will have some huge growth spurt the second they have a birthday.

Peace all.....

 

[KJ Luvs Pluto]

Hi CYL - So sorry you have to join us here but there is a wealth of information from the wonderful ladies on this thread.

I too had to have my chemo during the dead of winter in Wisconsin and had to drive more than an hour to get it. The onc. told me that if I needed the neulasta shot I could get it from my local clinic or give it too myself but I worked real hard at keeping my blood levels up and never needed it. I just had Taxotere and Cytoxan though for chemos. My radiation too was the same distance every day for six weeks but it really did go by fast. I kept working through chemo and rads as much as possible and that helped.

Feel free to ask any questions you want here - there is always someone that knows the answer or can just give some support.

 

[luvmarypoppins]

Good morning ladies

Crabby Amy - welcome, but sorry you have to be a part of the club no one wants to join. The ladies here are a wealth of information and a source of strength and encouragement. I have thyroid cancer and they have adopted me. Feel free to ask anythng, vent when you want to etc. Wishing you all the best.

MinnieTink - glad to see your moms treatments are going well and happy b day to your little guy.

Lisa - hope you had a wonderful week end with your dd and wishing you all the best with the test results

Cheryl - wishing you all the best too as you are waiting for your results. Hmm, maybe some nice Garth Brooks music would be a good distraction??

Things here are o.k. I took a long nap yest. Which reminds me to call the gp. I have been putting that off. I am going to ask for a blood test script first. I want him to do b12,blood volume,cholesterol etc. which the endo did not do. Dh has callled me from china every day but the callls dont come through, they just go to voice mail. He is well though. Ds20 met the dog he is sitting this week. His court case also got postponed till january. Its a joke here. They now wont let you mail in proof you got the car inspected within 24 hrs. of being stopped you have to go and bring it to court. Also ds18 got pulled over for a inspection check point last night. He was fine. Looks like they are doing this just to raise money for the state I think. Ds18 has not heard from the lst physical therapy place. So I told him to call and then set up an appt. with the 2nd one. I just dont want him to wait, assume stuff and miss the whole job opportunity etc. A lady from my church called me, thanking me for the cards I send her each week. She is having chemo tomm. I think she has kidney cancer? She came to see me in the hosp. after my lst operation etc.

GTAGWTA. Have a great day everyone.

 

[wdw4us2]

Amy - Welcome to the thread! If I were in your position, I think I would opt to have the chemo closer to home. Since it's quite a distance away and you're concerned about the weather, it makes the most sense to me. Besides, after my last two chemo treatments, I didn't feel so great and I was thankful that I only had a ten minute drive home. Good luck to you as you begin on your journey back to a healthy life!

I absolutely had a great weekend with DD at home. We went to see the movie "Easy A" on Saturday and took DS along with us. I can't remember the last time I laughed so much at a movie! I managed to keep my surgery from her since I'm feeling pretty good. Got back in the pool this morning and did my 100 laps although it took me six minutes longer than it usually does. Still awaiting biopsy results. . .

 

[CherylDan]

Crabby, welcome to the thread, but sorry you are here. Peace of mind is really important, so I wouldn't compromise that. It would be a good idea to have a chemo buddy or two lined up who would be able to run back and forth with you. When friends and relatives are asking if they can do anything for you, say yes, and ask them to drive back & forth with you - have a sign up sheet of sorts.

Linda, your procrit story had me . What a nightmare that must have been at the time!

MinnieTink....such a cute story about your son! Glad your mom is doing well.

MaryAnn...sorry you haven't been able to actually talk to DH. Hope he gets home soon!

Lisa, sounds like a great weekend. Hoping you get good results, and soon!

My CT scan is scheduled for today at 5:30. Have a jug of barium I have to drink between 3 and 3:30. (insert puke smilie here!) Good times. They are scanning chest, abdomen & pelvic.

GAGWTA!!

 

[luvmarypoppins]

Good morning ladies

Cheryl - hope the ct scan went well for you yest.

Lisa - thinking of you while you are waiting too

Laurie - we wish we were in disney with you!!

Linda,Anne,Barbara - did you hear that the apple crops are suppose to be 20% less this year? I read it somewhere because of some hard May frosts?

Well guess who I talked to - DH!! Yup!! He is in Chicago and will be home later toight. We both agreed that they were screening his phone calls and wouldnt let them go through, only to voice mail. I think it might be due to the nature of his work etc.? It was not a good situation not being able to actually speak to him. DS 18 did not get the lst pt job and has not heard from place 2 again and now sent a resume in to place 3. He is motivated for sure. DS20 starts his 10 days of house/dog sitting tomm. My stomach draining got a little worse again. I think this will be the story of my life these days. I just want to be normal. I told the surgeon, this is not normal etc. No matter how small it is etc. Sigh,sigh.

GTAGWTA. Have a great day everyone. Blessings always.

 

[MinnieTink]

Sending positive thoughts and prayers for everyone!

The power of positive thoughts and prayers was aparrent on Monday for my family. My dad (dx with bladder ca in July) had a follow up cystoscopy Monday. There was scar tissue but no evidence for recurrence. The area of scar tissue will have to be rechecked in a couple months but we were so happy with this so-far-so-good news.

Thanks everyone for your kindness and good thoughts!

 

[CherylDan]

Minnie Tink, hooray for good news!

MarryAnn, glad you finally got to talk to DH and he's on his way home! Sorry you are having issues with the draining again.

CT scan went ok, I guess? They didn't tell me anything, but I didn't expect they would. Haven't heard anything yet.....I just cringe everytime the phone rings. LOL, I'm stuck in the place of being tired of waiting, and terrified to know!

GAGWTA!!