Starting Chemo Aug 09

gillyone

yay!

msmpatty

Hooray for all the good results!   I hadn't checked in for a while so I missed all pre-check angst, but I'm glad all is well with Gill and Lilah.  You're next Weety!

"Left over boob"  LOL. 

My Onc pretty much does the same as everyone else's.  I get an annual mammo but have also been getting an ultrasound every 6-months because they are following a couple of lumps that so far have been fine. 

Patty

gillyone

Forgot to mention the onc gave me a "prescription" for PT for my shoulder to improve my range of motion. Have to find time for that! I said I didn't need to see someone, just exercise my arm. He insisted I see at PT to make sure I learn the correct things to do.

jenn3

Lilah - I was getting ready to type in that I'll be thinking of you for your check up, but.......I missed it.  You've already gone and finished.  Congrats on good results.

Gill - I hate going to PT too.  The last PT I went to for my back prior to all of this was the best I've ever been to.  He really focused on my hurt areas, watched me to make sure I was doing things right, etc.  It was the first time my back felt good after getting the exercises from the PT doctor.  There was a point to the story, maybe you'll get a great PT doctor that will help you with the arm.  Good luck.

Weety - OMG........your story is hysterical!!! You have to remember that for many, many years and tell it to your daughter over and over. 

Patty - How have you been doing?

My pain got a little out of control again, had another meltdown, etc....The onc increased the dosage of my long acting pain meds and I feel like new again, full of energy and mentally ready to fight again.  I started chemo yesterday, so far, so good.  I'll keep y'all posted.

gillyone

(((((Jenn)))))

Loveshermother

Sorry this is a duplicat post. I had this posted in ILC, but wasnt getting much of a responce. Hope someone can help.. Our main concern is the heterogeneous nodule.. Thank you for any advise.. I just wish I could understand all this so I could help my mom to put her mind at rest... My mothers scan results are in and there is a area of concern. Her reg dr. read them for us sence her onco dr appt isnt until 4/22. Here is where there is concern. It reads: There is PET activity visualized in the cervical and thoracic region which correlate with areas of fat consistent with brown fat activity. on axial image # 82 there is a focus of increased PET activity visualized in the lateral aspect of the left breast region demonstrating a maximum SUV of 2.1 and correlating on the CT image with a focal 8mm heterogeneous nodule. This is indeterminate clinical significance. The possiblity of malignancy cannot entirely be excluded. Moms left breast is where she had the masctomy. Is it possible this is a reoccurance. Any help will be welcomed. I have already made a appointment with her breast surgon for 4/29 sence I figured her onco will referr us back to him, so there wont be any long waiting in between. She is very nervous and so am

Lilah

Janet -- so sorry you have this to worry about.  What did your mom's regular doctor say about these results?  I confess I don't understand a lot of it, but certainly agree with you that the "possibility of malignancy" comment is not encouraging.  I think you did the right thing making an appointment with her BS so that you won't have to wait should she need more surgery.  Did your mom have radiation?  I assume she had chemo (and that's why you post in this group).  Is there any way you can get your onc to see your mom sooner? 

Jenn -- I am SO sorry to hear your pain got worse and that it caused you to have a meltdown.  I know what that is like and it just sucks.  That said, I'm delighted to hear that the new meds are working better and that you feel so good!  Yay!  I am praying that the new chemo does the trick.  Sending you hugs.

Gilly -- I know how you feel re: PT.  I should be going myself (for some lingering shoulder/shoulder blade pain I still have) and my onc gave me a prescription a few months ago when I saw her last; I have not gone.  I just am so tired of doctors and am focused right now on seeing LESS not more.  I did get some exercises from a friend (who got them from her PT) and they have helped me a lot... so that should make me go, right? 

Loveshermother

Lilah

First I want to thank you for the responce. He (her reg dr) said that he didnt understand it well enough to comment and it really wasnt he field. He is the kind of dr. who dosent like to alarm anyone and said dont start to worry until you talk with him.. She sees him on 4/22. Mom never had radiation. She only had chemo 4X and a mascotomy left breast only. I actually joined this group when mom started her journey with BC and learned so much from all of you. Its a scare that we were not prepared for. Mom and I were talking last night and she said she knew something was going to be wrong. She has not been feeling well and just couldn't put her finger on what was wrong. So I guess we now wait. At least I got in touch with her breast surgon and he will read the reports tomorrow (I faxed them to him) he was out of the office until friday. The nurse made the appt for 4/29 and he will call me if he wants to see her sooner. Mom is a strong woman I just hate to see this terrible disease come back. Is it unusual for it to come back in the same place? Well now I'm rambling. I have been trying so hard to get the right info on this and I'm worn out. Didnt sleep much last nite just kept thinking on what we do next. She knows I will be doing everything in my power to help her threw this. She is my Mom! She is priorty #1.. 

Lilah

Janet -- don't worry.  My guess is that the only thing to do with info that says "possibility" is to biopsy the area of concern and test it.  So making the appointment with the BS now was smart.  I hope your mom is wrong and whatever she is feeling is not more cancer. But I can sure appreciate how scared you must be right now.  It's the 4/22 appointment I was thinking you should reschedule -- that's the one with the onc, right?  Because the onc can tell you what you need to know as far as how to interpret the results of the scan.  4/29 is with the BS right?   And that is fine. 

It can't hurt to call the oncologist's office back -- tell them you are specifially concerned about the report (which you've seen but don't understand) and if there is any way to see the doctor sooner it would really be appreciated.  I think if they know that you've seen the report they will try harder to get your mom in sooner.

Loveshermother

Lilah,

I took your advise and called her oncologist. He will see her tomorrow at 2pm. I called my mom to let her know and she was happy that she didnt have to wait another week. So I will let you know what he has to say. I am also hoping to hear from ther BS tomorrow too. He was out till friday and the nurse said she would give him the reports. I know he will have lots to catch up on but I hope we do hear from him, If not well then we will see him on 4/29. It feels good to have the ball rolling. Thank you again

Penny

Loveshermother

I have a question... If this is cancer again. How would they treat my mom this time.  Would it change her stage? We go today to see the onocologist at 2. Just wondering what is next. Guess I should just wait and see but I like to be able to be on top of this and take the worry out of it for her the best I can. We need her to be strong to fight this beast.

Thank You in advance

Penny

Lilah

Penny -- so glad you called and that he will see your mom tomorrow!  (And sorry I misread your sig LOL and thought YOU were Janet).  Since it says "possibility" it's hard to say what they will do... but my GUESS is that a next step would involve doing more tests and/or a biopsy to get more conclusive info.  Let us know what the onc says after you see him.

jenn3

Penny - The SUV (Standarized Uptake Value) on your mother's PET scan is low @ 2.1.  Most activity that is metatastic is above 2.5.  However, I am not a doctor, it's from my research when I had a PET scan.  The grade is measured from 0 - 10 or 20.  Mine was a 9, which was considered high.  The nodule seems to be something they aren't certain of, it's there, even/uniform in shape and size.  Most dr's do PET scans with a CT or MRI to confirm the findings because the PET scan will light up on any area with a lot of activity and have something like a 40% false positive. 

I know it's hard, but know that your Mom is in good hands with doctors receiving good care.  IF.......by chance there is a recurrance, her onc would then look at her particular case and give her either  harmonals, Herceptin, chemo and/or radiation.  Each situation depends on each patients cancer cells and what is driving them. 

Good luck at the appt today.  ((((hugs)))) and I'm really sorry you have to go through this - it sucks!

Loveshermother

Not so good news.... Her onco said that he wants the nodule out.. He dosent like the uptake and the ct and pet scan both picked it up. He said that ct scans are 98% accurate and he will call the BS and let him know what he thinks. I called BS and moved her appt from 4/29 to 4/19. So we have the ball rolling. My Mom is upset and just kept saying she just dosent want to do this again. I asked what would be the treatment and he said radiation. He also said that she is a triple neg that on the DX report even though it had her ER + but he had that changed. SO there will be no harmonals or herceptin. He wouldnt treat a local recurrance with chemo. My concern is that mom has a arotic heart valve and the radiation will be on her left side. I asked if it could damage her heart and he said it could but they will be watching it. Ahhh so much to think about. The one thing I did forget to ask is will this change her stage? Would anyone know this??? I worry for my mom she isnt a well woman and this is just to much for her to handle. Plus now with the surgery she will have to come off her coumadin and that just ware her out.. Well at least we have the ball rolling and we will get threw this too. She is upset that my two daughters both seniors one in college and one in high school that I should be enjoying them and not dealing with this. Had to set her straight on that one. I can and will enjoy them and get her threw this new journey of BC..... We all will!!!! Thank you all so much for the concern and prayers and helpful information. Jenn you are right cancer SUCKS!

Penny

Lilah

Penny -- that sounds very enouraging and treatable.  Remove the nodule and give her radiation.  Hopefully the radiation won't affect her heart and she will be done with cancer when she gets finished with this round of treatment.

gillyone

Penny - we are thinking of your Mom as she deals with this (and you too!).

Loveshermother

Sorry as I sit here I think of more questions. I have them written down for her breast surgon but wanted to see if anyone might be able to help. When we were at her onco he said that ct's are 98% accurate and sence the pet scan picked it up too that it more than likely is a recurrance,BUT he didnt think it was ICL due to its not the way it acts. Also he said that (during other visits with him that he felt something then sent us to BS) that what ever it is he wanted it out... BS said it was nothing?? So could this have been growing ever sence?? Now with all that being said should we demand a biospy or remove it all. Onco wants it removed..

#2 if this is BC would it change her stage of cancer. I dont know if recurrance changes that or not. Or would it only change if the test lymph nodes? During her origional DX they removed 12 lymph nodes all we clear. Still real nervous about the radiation so close to her heart.. Quess they will watch that closley but just real nervous due to all her heart complications.

Hope you all enjoy your sunday. Should be a decent day her in NY. Finally. We had some very strong storms here last night. We went and picked up my daughters prom dress yesterday. Now to get the alterations going.

Have a great day!

Penny

Lilah

Penny -- if the spot is small enough you might as well simply remove it (rather than biopsy it).  I don't know about the staging.  You could ask the BS all these questions when you see him (or her) on Tuesday.  Make sure you write all your questions down on a list and bring it with you. 

Let us know what the BS says!

buccaneersdj

Penny- Staging would depend on whether this is a re-occurance or a new cancer. My mom had a breast tumor in 1998 followed by a mx and 5 years later a brain tumor that was acualy a breast tumor in her brain (that changed her staging) However, if it is a new cancer all together it would be staged like they did with the original cancer according to " TNM" tumor size, node involment, and metastisis. I'm thinking of you, hang in there!

To all my fellow mammogram graduates congratulations! I go today to get my mammo, apparently back in November when I had that lump biopsy I should have gone then to have a new baseline done, but my primary dr. and the facility I had the biopsy failed to mention that. I never told my Onc because it came back negative. So it wasn't until my 6 month check up I told her and she said I should have had the mammo. Anyway....it is almost time for my annual so off I go, anxious like always! I have lympodema in my leftover boob and last time I had a mammo on that one it hurt for a month! So wish me luck!

Jenn- I'm glad to see the ball is rolling...how is the chemo treating you? Hopefully not like last time! I hope the pain is under control now too! I think about you everyday! Keep your chin up girl!

{{{HUGS}}} D

msmpatty

Donna - Good luck on the mammo.  I just hate getting squished in that machine.  I bet your results are just fine.

Penny - I'm sorry you and your mom are dealing with more tests and uncertainty.    Hopefully, the doctors will be able to answer your concerns.

Jenn - Wow.  Your grasp of the PET information is impressive...I'm just sorry you had to learn about it.   Thank heavens you've gotten the pain back under control.   

Patty

Loveshermother

Thank you all for the helpful informantion and your concern. Mom has her dr appt tomorrow at 3pm. So hopefully we will have concrete answers before we leave. Mom had a tough day today. I told her we are all allowed to have a bad day but tomorrow we should have some answers. We all thought that she was done with this but I guess you just never know. Our wish is that all this worry is for nothing but If it isnt then we moved forward. Thank you all again for you help. It truly means alot to me.

Penny

Donna good luck on your mammo. Jenn I hope that the pain you have been having is now under control. Bless you all

jenn3

I've been absent from the boards.  I peeked in for less than 10 minutes here and there, but stayed away for the last several days or so. 

The Xeloda/chemo is treating me well.  At this time, no SE's.   I know it's only a week in and the SE's can build up, but so far so good.  And.........the loosy goosies that come with Xeloda are not there because of the severe back up I have due to pain medication - it seems to have balanced out for now.  I am still having pain off and on, but for the most part is under control.

Loves....sending you a big cyber (((hug))) and hope that today's appointment goes well and all of your questions are answered.  If not, we'll try the best we can to answer them.

Donna - wishing you good luck with the mammo and sending you a (((hug))) as well.  I like hugs in person or through cyber space - they seem to lift the spirit.

Lilah

Jenn -- so glad to hear the "so far so good" on the chemo ... and it sounds like the pain, as well, is under control.  Hang in there!  I hope your absence is because you are enjoying life!

Loveshermother

Pure fustration... I am so angry right now. Sorry for the rant. So from all three doctors that we have seen in the past week. NOT one can agree on any of this. Reg dr... Its not my field but you must follow up with your BS. Onco... I want it out.. demand it... CT and PET scan show it to be something... BS.. I'm just not sure and dont want to put you threw anything more right now. Lets wait 3 months and you monitor it and call me if you see that it is growing... Really not one dr. can agree with each other. Mom decided to wait the 3 months and keep a eye on it. We went a bought a perment marker and circled the lump. This way we can see for sure if it is growing. I am so fustrated right now that I just need to have some time to myself and sort it all out. Mom thought that I was angry with her agreeing with the BS.. I made it known that is not it at all. Just fustrated with more waiting. I just hope that they are not taking a chance with my moms life. I know its just 3 months and they are carefully watching her. Maybe its just me. I just dont know. Maybe its time for me to relax some and let life happen and take it all one day at a time... Stop trying to be it all. I just love my mom so much and I dont want anything to happen to her. I will hear and listen to anyone..  Thank you for letting me rant and get it off my chest. I hope I have not upset anyone. Also I just want you all to know that Im truly thankful for all your help and suggestions. Tomorrow will be a better day.

Penny

jenn3

Oh.....Penny, I am so sorry you had such frustrating appointments.  There are so many times, the doctors in the field of oncology don't agree on many things.  It's very hard to get the right answers from them and sometimes get the answers we want to hear.  If your Mom is comfortable and okay with waiting, then yes, relax as much as you can for the next few months. However, if your Mom feels like she was bullied or pressured into waiting, see another BS and have the lump removed.  At this point it is your Mom's decision.  My suggestion - wait a few days, cool off, then talk to your Mom and get her feelings, not the feelings of the doctors, but hers.  Then accept what she really wants or if necessary push the doctors hard to make sure your Mom gets what she wants.

((((Hugs))))

jenn3

I just got back from the oncologist and it doesn't look good.  My baseline scans showed progression of the tumors, 3 and 4 times in growth, one doubled and now there are many more nodules in the lungs.  The onc decided not to wait another 2 months on Xeloda alone, he wants to double my chemo. We talked about various combinations, including Xeloda.  I've decided on Gemzar and Carboplatin, starting Monday. 

I'll keep you posted.

Loveshermother

Jenn,

Hearing what you are going threw .. I feel so selfish for my rant. You are one to look up to, being able to help others while going threw your own health issues. I'm so sorry for the progression. I will be praying for you and your family. I will take your suggestion and cool off. I know mom was ok with waiting. She just isnt up to anymore right now. Like I said to her and she ditto me. We just want life back to normal. Will it ever happen? May tomorrow will be a better day. If I could reach threw this computer I would give you a big hug.. Hugs and prayers.

Penny

buccaneersdj

Jenn- I'm so sorry to hear this news. Am I correct in thinking, it's not that the Xeloda isn't working, was the baseline taken before you started the Xeloda? I'm glad the Onc. is being aggressive and I hope your body can handle the double dose as well as it has been the single. I am hoping he finds the home run chemo combo quickly! Remember what an August Amazon is...head held high girl! Sending {{{HUGE HUGS}}} your way! D

gillyone

Jenn - I hope this aggressive approach will kick these mets to the sideline. It is so unfair that you are having to deal with all this.  ((((Jenn))))

Loves - you are entitled to rant and demand the best care for your Mom.

Lilah

Jenn -- I am so sorry to hear this news but happy to know that your doctor has a plan.  I am sending you strength and hope -- beat the monster!

Loves -- I agree.  Rant.  And I also think Jenn's advice is wise.  Cool off and then see if she is willing to talk to another BS.  If it were me I'd want it out.