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To stage 4 in just 55 days

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Soorya View Drop Down
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    Posted: Jul 13 2018 at 12:34pm
Hi Everyone

I cannot believe this is happening.I had third recurrence and they did CT scan on May 11.Everything was clear and my lump on my chest didn't show up in the CT.
Then my doctor ordered PET scan on Jul6
Now PET scan is showing mets to liver, lungs,spine and bones.

Also My oncologist said, chemo will not be better option since i already had 5 powerful chemos.

They want to give me only immunotherapy this time.

I am 36 yrs old and i want to see my daughter growing

Scared so much and not sure what to do


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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 14 2018 at 12:55pm
Soorya,

I'm so sorry you received this news.  I don't have any suggestions except could you look at clinical trials?


Edited by 123Donna - Jul 14 2018 at 12:56pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Jul 14 2018 at 3:43pm
Hi,

Im sorry for your news. Did u happen to check for the brca gene? U may benefit from a parp inhibitor.

Edited by rstar - Jul 14 2018 at 3:44pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2018 at 12:04am
Hi, I joined this chat to support a friend and I saw this post. I have survived ovarian Stage 4 cancer for 13 years. I know the twists and turns and BUMPS in this long road. I am also a student at TWU.edu in the Medical Librarian program. Let me look up immunology recent articles and post the link so you can read. Take a deep breath every 15 minutes and close your eyes. That exercise will help alleviate anxiety. Remember you can not do anything about "this" on the weekends and non-business hours mon-fri. I used to pretend that I was fine and that I could not receive any more bad news during my off- times. Tomorrow is Sunday- take the day off from "this" and spend the day with your daughter outside doing anything regular and do not let "this " creep back your head  till Monday at 8 am. Then it's back to work kicking this!!!!!!!!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2018 at 12:53am
Found a june 18, 2018 article on the official pubmed.gov website. This is the only official website for every clinical trial done in the US! If there is ever an article you can not open- go to your local college, hospital or local library and ask the Librarian for assistance . Staff at the check-out desk are not usually librarians so ask to speak to the Librarian.
Then take a look at the National Center for Biotechnology Information site www.ncbi.nlm.nih.gov
go to All databases
click Literature
click Pubmed health database
type in your exact questions or diagnosis
The title of the article 29916188 is "New Horizons in breast cancer: the promise of immunotherapy"
WOW! promise is promising and immunotherapy is what the scientific community is praising right now
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2018 at 6:33am
I want to explain that pubmed.gov is the search engine that finds academic and scientific RESULTS of clinical trials and explains the findings of those trials in terms of effectiveness and research and information based on it.
The NLM stands for The United States National Library of Medicine at The NIH- National Institutes of Health.

To find a clinical trial to possibly participate in: https://clinicaltrials.gov ;    is a resource provided by the U.S. National Library of Medicine

Be careful with reading information on the internet!  Always refer to .gov and .org websites. Remember to ask/call or email a librarian for help! Trying to figure out cancer is not the patient's job- we have enough on our plate. We just need to know where to go for help, information and then educate ourselves.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2018 at 6:35am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Soorya Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2018 at 11:44am
Hi All

Thank you for all your support

I am into clinical trial in cleveland clinic for immunotherapy.

I am BRCA -.

Prescreening process is taking more time now.I am worried about this delay.

Its been 12 days after my pet scan.Now the clinical trail needs multiple approvals and scans again.I am worried that this delay should not make things worse

Is it too much delay. They have scheduled scan next week wednesday and then Liver biopsy.I dont know when the treatment will start


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2018 at 12:39pm
Dear Friend, You are in an awesome hospital and receiving cutting-edge treatment that the entire scientific community is excited about from my research. Please reach out to a nurse or anyone in your clinic and ask if there is a support group at the hospital that you can attend in person. A hug and someone to hold your hand right now will help and I know everyone on this site wishes we were there in person.
I can read through the lines of your post how much anxiety you are feeling- 100% natural. Please keep trying deep breathing exercises and getting outside even for a few minutes for some fresh air. It might help to ask your DR/nurse if there are some Light-dosage meds you could try -just while you  are waiting for the scans/tests for anxiety. Waiting and not knowing what treatment is coming next is the hardest part for me. Take care of yourself and keep us posted while we keep you in our prayers.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2018 at 12:08am
Ok freaking out. Had lumpectomy and of oct. 2017. Finished rads this past feb. Had mammo in May and report showed scar tissue. Noticed in the last 2 weeks that there is lump at original tumor\lumpectomy site that hurts. Surgeon said normal pain for scar tissue and nerves rejuven ating. Onc called and wants ultra sound.. I did have pcr. Anyone else have breast pain at this point after treatment?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Soorya Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2018 at 2:06pm
Hi All

I have completed my prescreening and liver biopsy.Doctors and nurse in cleveland clinic helped me a lot in getting all set up in 2 days.I am grateful to them.Still waiting for results.
Will keep you posted
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 10:17am
Originally posted by Lisa s Lisa s wrote:

Ok freaking out. Had lumpectomy and of oct. 2017. Finished rads this past feb. Had mammo in May and report showed scar tissue. Noticed in the last 2 weeks that there is lump at original tumor\lumpectomy site that hurts. Surgeon said normal pain for scar tissue and nerves rejuven ating. Onc called and wants ultra sound.. I did have pcr. Anyone else have breast pain at this point after treatment?


Yes, still have pain and lumpy breast and lumps in my arm-pit.  Also redness persists and orange peel skin.  Had my op 30 July 2017 so a few months longer than yours.
I have had intense physio consisting of massages minimum twice a week for most of that time, apart from the 7 weeks of rads and the odd week off for holidays, etc.
Just had mammo and echo and seen surgeon for one-year check and I am told all is well.

Have you tried massages?  Also ask a qualified physio to suggest some arm exercises to do.  Massages from the physio and my own daily massages have helped immensely.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 12:10pm
Dear Friend, It has been a few days since you posted from Cleveland Clinic. I just wanted to check on you and let you know you have many friends on this site sending you prayers everyday.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2018 at 10:48pm
Plume

Had ultra sound and mammo the other day. All clear! Sometimes I wonder if the mind is so powerful we conjure up these side effects in our head. Have not had any pain,itching etc since my appt. Doc did give me meds for hot flashes that is also an anti anxiety med so maybe that is helping? Thank you for your reply it is nice to know i am not alone with these issues but sorry u have them too!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2018 at 2:42am
Well, Lisa, it is not always "in our head" though I agree that some of it really IS imaginary! Scar tissue can certainly cause pain.  I have lumpy scars and a HUGE fold over my breast.  After months of specialist massages, the lumpiness remains. Will now be having massages with LPG equipment.

Anxiety, that is another real issue, and I think that that is what is making me unable to sleep.  I am not aware of the anxiety as such but I worry about little, ordinary things that never do amount to much!

Great that you are feeling better.  And really good for me to hear that too!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Soorya Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 11:38am
Hi All

I had my first infusion on wednesday

I had severe fever that night and went to ER.was in observation for 24 hrs. now i am feeling ok

thanks for all your prayers and wishes

I am having hip and neck pain on the left side.Not sure about the reason.My doctor is really worried on my neck pain.Any advice for this?



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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bfriend Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2018 at 2:08pm
Hi, I am so glad to hear your treatment has started.....did they start the immunotherapy on you?  If so, you may be the first patient to receive it . Your side effects may be new to us who have only have received traditional chemo. Just mention every tiny weird or funny feeling to your nurse because they need to know so it helps them figure out how to adjust next treatment with a tweak. Are you in the hospital at Cleveland Clinic? You are in my prayers every day!  
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