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Radiation | External radiation
The initial treatment isn't bad if you really adhere to applying aloe and burn cream hourly. But the long term effects are bad. The muscle and skin are completely altered. Mine are so tight they pull my body out of line. My implant wasn't able to drop into the pocket because the skin and muscle never relaxed., I have…
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Greg's progress
I don't come on very often but for some reason thought of Greg today. It's good to see everyone being so supportive. Of course, why wouldn't he get all this support. I'm sure he's feeling all the love. Hope his hospital stay is short and is able to get home soon.
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Oh No | Not knowing that a bum in the head was the beginning on cancer
When my husband found the 1st site on the top of his head, he had thought that he had hit it and not remembered, not knowing that it was the beginning of cancer. So until it had started growing, he didn’t see a Dr to have it checked out.
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Psa up. Now what do we do
Hi the psa is up after a couple of years at close to 0. We have had chemo immunotherapy and are on xtandi and elongard. Not sure what the dr will recommend any thoughts on what we might do next. We are trying to do anything but chemo. Thanks in advance
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Thank you, Greg. An Inspiration, A Fighter, A Survivor
I haven't been active recently on What Next, but am an old-timer. So I've known Greg for many years; read his insightful & encouraging posts, & followed his amazing, inspiring story of survivorship. I am heart-broken that cancer has taken him from us, and more importantly his family, friends & loved ones. We have learned…
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Celebration | Finished treatment
September 11,2019
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Decision Point | Go alone?
Sometimes I feel like I want to go to my first oncologist appointment alone, but a family member insists on going. It makes me feel anxious.
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Decision Point | decision to go with the neurology group that my oncologist referred me to.
Thank you for sharing your experiences. It always helps me think things through especially when I am not sure what I should do. I want to work with my oncologist because this is more cancer related and I am worried about a possible cancer connection although the back is a problem as well. About 2 months after my surgery…
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My turn for a medication question - Megace
We may be going a different direction than chemo, after I get a set of CT scans. Had an appointment with my oncologist, virtually, this morning. Rather than the traditional taxol/carboplatin, he thinks we might be better off with Megace. Anyone been on that one? I think it's akin to tamaxifin (or however it's spelled - I…
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Celebration | Relief At Minimal Treatment
After thinking initially that I would have to undergo radiation, that was off the table when we decided to move forward with mastectomy. After getting news that there was no evidence of spreading to the sentinel nodes, that was another relief. After the Oncotype DX score came back low and my oncologist said we would just…
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Procedure or Surgery | Sentinel lymph node biopsy
Sentinel Node biopsy was done at the same time as the mastectomy. I really didn't know people did it at another time. So I just thought it was part of the deal with the mastectomy.
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Recurrence treatment decision inquiry
Hi everyone, a family member recommended this network and I have joined in hopes to share my experience and obtain thoughts from others going through the same. I have a diagnosis of Endometrial Serous Carcinoma stage IV. I heard news that my cancer has come back after going through the first line of treatment options which…
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Clinical Trial | inhibitor of cyclin D1/CDK4 and CDK6
Started Sept 2020. This is a trial of ribociclib combined with Femara. Only side effects so far are fatigue. 2 women are on this trial at our facility; the other woman had to reduce the dosage due to her lab values. As of Oct 22 Pat's labs values are still reasonable., CA-125 reduced from 327 to 307---not great, but down.
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What to do next...
What to do next
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Clinical Trials
Are there clinical trials being done for metasticized triple negative cancer
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Prayers for Greg
I usually check out the What's Next Digest when I first open my computer, and I am always a little disappointed when it skips a day. But, now, I find myself being disappointed when there is still no post from Greg. It has been 20 days since he left a word here about the stomach tube craziness. I know we are ALL concerned…
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Trelstar
Hi All, I'm trying to get any info on Trelstar. Due to the shortage of Lupron Depot my Oncologist wants me to start taking it. I've been on Lupron for 4 1/2 yrs. I was hoping to be off of it. My Ca27.29 us up and down. I'm use to being 41 or 42. I've gone up to 67, had pet scans. watched everything I did. Got it down to…
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CT results
I promised I'd add in my CT results. Had a virtual appt with my oncologist this morning. Looks good. There are a couple of areas we'll keep an eye one -- diaphragm and right adrenal gland -- but we've been keeping an eye on those since 2012. I forget what exactly is up with the diaphragm. I've known about the cyst on top…
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Prostate Cancer Radiation
Do any of the Prostate folks have a good resource for a beginner's guide to this topic? I have a friend who is trying to figure out how to help her Dad through this, he seems to be Stage 1 but not totally sure. She said he is having radiation with spacers and markers. Thanks in advance!
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Not Forgotten
We all tend to get focused on certain situations at times and lose sight of the forest as we concentrate on the trees. Our world is a mixed up and crazy place right now. Things can feel awfully bleak, but most of us have learned some good coping skills. As we focus on some pressing problems, don't forget that all of us…
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Clinical Trials
Are there clinical trials being done on Triple Negative Cancer which has metasticized?
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Lymphedema discomfort
My arm is always throbbing. I see no outward signs of blood clots. Massage taught to me by a therapist does not help. The sleeve does not help. Is this just my new normal? I am very puffy next to the arm pit area as well. Thanks for listening to my lament!
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Missing Greg
Anybody hear anything about Greg lately?
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Missing Greg's Posts and Praying He's Okay
Donna, would you give us an update if Greg isn't up to it? Or Jane, it seems you keep in touch with him outside of these posts - have you heard how he's doing? Or ... anyone else who knows ... update, please? Prayers that they are finding a solution to his feeding tube issues and any other problems he's been encountering.
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Drug or Chemo Therapy | Targeted therapy
All TACE Procedures (N=3) were uneventful. Post procedural complications ranged from minimal to rehospitalization x 1 wk.
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Procedure or Surgery | Liver transplant
At 10 months post transplant, doing ok now. Not an easy road but worthwhile.
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Medication question
I know we are all sidetracked with Greg's illness and hospitalization. However, MelindaLV wrote in 4 days ago asking the community about TREISTAR and anything you may know about it. I told her that I had no knowledge of it and that I was confident that someone would know something and would respond. I was wrong, she's not…
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Oh No | Just Diagnosed
Just diagnosed with GIST in the head of the Pancreas. Dr recommends Whipple procedure and Imatinib. Part of my trouble making a decision for the surgery is that I have no symptoms and am not suffering in anyway. This recommended surgery and drug seems like a difficult life-changing decision.
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Just got diagnosed with thyroid cancer
Now I have two cancers. How often does that happen? Anyone else?
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Other Care | Doctor visits
I still have to go see my oncologist about every 3 months and I still go see my surgeon I don't know how long I've got to keep doing that and I still yet to keep my appointment to get my Orthopedic breast with bra so I still have a lot to do
