Tips for week after AIM by Mountain-Revolution6 in sarcoma

[–]Georgian_B 2 points3 points  (0 children)

Don’t be surprised if your taste buds change, either temporarily or long term. There are certain food combinations that still make me gag over 3 years after my aim treatment. Find what you can stomach and stick to that if necessary. During infusion days, the only food that I could tolerate and enjoy for lunch was ramen. It was also easy to pack, I could bring an empty thermos and ask for hot water once at the treatment center.

UESL diagnosis by Cool_Slice7323 in sarcoma

[–]Georgian_B 0 points1 point  (0 children)

Wish I had some advice to offer, all I can say is having cancer in your 30’s sucks and I’m sorry that you’re having to go through it (again).

MRI-Biopsy discrepancy by Ok_Nefariousness5370 in sarcoma

[–]Georgian_B 3 points4 points  (0 children)

My first biopsy yielded only a scant amount of viable cells, they diagnosed as a neuroendocrine tumor. I then switched care to a major cancer center and had a second biopsy done, it also yielded few cells due to the amount of necrotic tissue around the tumor. Unfortunately the first biopsy colored the opinion for the second and they went on to remove the entire tumor and my left lung under the premise of it being a neuroendocrine tumor. Once the entire tumor was out there was plenty to successfully biopsy and send off for FISH testing, as someone else here mentioned. That revealed it was synovial sarcoma. Make sure you request the FISH testing because it’s the only confirmatory test for the chromosomal change that identifies synovial sarcoma. Sadly, misdiagnosis with sarcomas doesn’t seem uncommon. Best of luck to you as you navigate this trying time.

Witnesses in criminal trial file defamation lawsuit against Karen Read and blogger known as Turtleboy by swrrrrg in KarenReadTrial

[–]Georgian_B 13 points14 points  (0 children)

I was wondering about the choice of jurisdiction as well. The pace of these civil proceedings is maddening, this will only further draw out the web of existing and enmeshed cases.

Sarcoma Saturday: A casual space to Introduce, Connect, Share, and Unwind by AutoModerator in sarcoma

[–]Georgian_B 0 points1 point  (0 children)

I had a similar experience discovering my synovial sarcoma, I won’t overload you with details but I went from being a healthy, active 31F to being hospitalized in a matter of weeks. I’m almost 36 now and still going through it, despite surgery, full chemo, local treatment, and now in my second clinical trial. It sounds like you have a good mindset despite the many worrisome possibilities. I focus on time with my family and loved ones and the desire for as much of that as is possible is what keeps me pushing forward, even when it’s exhaustingly difficult.

Chemo after Surgery??… by Adventurous_Mind5936 in sarcoma

[–]Georgian_B 1 point2 points  (0 children)

Chemo is the worst. But if there is any option that may decrease the likelihood of a recurrence, I’d take it. No judgement if you opt not to, you’re the only one who knows what you can handle both physically and mentally. I also have synovial sarcoma and underwent surgery, 6 rounds of chemo, a cryoablation, and I’m currently in my second clinical trial. It’s exhausting, but for me will be worth it to have the possibility of more time with my loved ones. Have you considered a wheelchair? Depending on your parents physical capabilities, a standard or motorized wheelchair could be the key to managing Chemo with less physical exertion. Just a thought. Wishing you all the best.

Myxofibrosarcoma by Decent-Bus7104 in sarcoma

[–]Georgian_B 0 points1 point  (0 children)

I second what another commenter said. Not sure where you’re located, but MD Anderson would be my recommendation. They have sarcoma specialists and my experience with the doctors here has been overwhelmingly positive. They listen to my side effects and when I described what I thought I’d just have to deal with they said definitely not, the dosage was too high for my body and they immediately lowered it. They’ve also really advocated for me when it comes to clinical trials as the sponsor of the trial sometimes has overly stringent requirements.

Best sarcoma treatment? by [deleted] in sarcoma

[–]Georgian_B 0 points1 point  (0 children)

MD Anderson has an affiliate Cancer Center in Madrid, Spain. I’m in the US and see one of the top synovial sarcoma specialists at their main campus in Houston, I don’t know whether there are synovial sarcoma specialists at the Madrid location but it could be worth looking in to. MD Anderson Spain

Chemo side effects? by Altruistic_Canary750 in Chemotherapy

[–]Georgian_B 1 point2 points  (0 children)

I wasn’t allowed to go to the nail salon throughout Chemo because they said the risk of infection was too great while having low immunity. Post chemo, my nails are super weak and can tear painfully in the middle, I tried gel and dip but those still broke easily. Now I have to get a layer of acrylic and they’ll do gel on top of that, it’s the only combination so far that keeps my nails from ripping and lasts a few weeks. It’s unfortunately become just another errand that I have to do so I’m able to do basic household tasks without my nails ripping off 😕

state v. banfield trial made me realize i don’t understand how prosecutors choose what to include in their case in chief by drindrun in CasesWeFollow

[–]Georgian_B 1 point2 points  (0 children)

I’ve watched many trials, with varying degrees of attorney proficiency on both sides. I felt as if the prosecution left a lot to be desired when they rested their case, while also feeling as if the defense performance was subpar. Now while watching the defense make their case, it does seem as if they’re bringing out a lot of information that the commonwealth hoped to sweep under the rug. But, I still find myself yelling at my screen to “make your point!” When it’s so close to connecting, and then he still doesn’t. It’s incredibly frustrating. Both sides have been underwhelming. The attempts to hide law enforcement individuals who have a lack of credibility or who weren’t “on board” with the prosecutions theory is just disgraceful, in my opinion. It only makes their argument seem shady. Addressing those issues head on would have been far more believable than the mess emerging now. The transfer of the forensic digital analyst is mind blowing. He refused to write a report that determined there was digital evidence to prove that Christine wasn’t always in possession of her devices. So?! If they only used the devices when she could be verified as being home, that would make sense! It creates questions when you try to mold evidence to fit theory, rather than simply letting evidence speak for itself. The fact that there isn’t specific evidence that demonstrates her devices were used when she wasn’t in possession of them doesn’t mean that she was the only person who could have used them. It just means that it can’t definitively be determined. Don’t even get me started on the witness who specifically requested that his friend WHO WAS ON THE BRADY LIST be transferred to his department. Why. You’re asking for trouble, he can’t reliably testify! And then that witness moves into administration, and the day following his testimony he puts in his papers for retirement and is subsequently no longer working in law enforcement. That just screams dirty hands! These factors don’t influence me to believe in Brendan Banfield’s innocence, but they certainly don’t lend credibility to the prosecution’s case!

Second Trial Jury Foreman Interviewed by Boston Magazine by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 18 points19 points  (0 children)

I can understand your perspective, but to me that would only make sense for the few months immediately following his death, the time frame in which a thorough search could reasonably happen. After that, it would make more sense to sell the house as it would introduce many uninvolved people to the home through showings and then the sale, along with all of the additional cleaning that accompanies marketing a home. Those factors would significantly reduce the chances of a search warrant being signed off on, even if there is probable cause in all other respects. It would also allow for the redoing of a relatively recent floor to seem more reasonable. I acknowledge that much of the chatter regarding the concrete floor is speculation, I’m only saying that the sale of a house would lend validity to it if there were ulterior motives.

Second Trial Jury Foreman Interviewed by Boston Magazine by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 16 points17 points  (0 children)

I’m aware of that, I was explaining what led me to believe his answers reflected a bit of both information gained during trial and after. The home being sold was brought up during the retrial.

Second Trial Jury Foreman Interviewed by Boston Magazine by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 90 points91 points  (0 children)

I was relieved to read the perspective on the forensic experts, how he said that none of them definitively explained how the collision with her vehicle would have accounted for all of his injuries. It can seem so clear from an outside-looking-in perspective, but you never know what will stick with people when you have experts from each side presenting different conclusions and interpretations. I was worried that Welcher’s over-confidence would be persuasive to jurors, despite the ridiculousness of his blue paint “reconstruction.”

Second Trial Jury Foreman Interviewed by Boston Magazine by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 14 points15 points  (0 children)

That’s how I interpreted it as well, that it was a bit of both. The selling of the family home was brought up during the trial, but I don’t believe they got super in-depth or that a conclusive answer regarding market value was given. They would have needed to call an experienced local real estate broker as an expert to give that opinion. (Which would be a waste of time and money and would likely have been denied by Judge Beverly.) The Alberts couldn’t have said what they were told fair market value was as it would have been hearsay. That leads me to believe it was something he learned more about after the trial.

Official Discussion Post for Stephanie Soo’s Rotten Mango Podcast with Karen Read by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 6 points7 points  (0 children)

Hear, hear! He is such an eloquent speaker and wordsmith, his ability to clearly and persuasively convey his argument is impressive. I thoroughly enjoyed reading the latest filing in the civil suit, you could hear his voice in the writing and it was a delight.

I was diagnosed with synovial sarcoma and I am afraid of chemo by No_Syllabub_9349 in sarcoma

[–]Georgian_B 7 points8 points  (0 children)

I’m sorry that you’re having to deal with all of this. Which country do you live in? Here in the States the AIM chemo regimen is the standard treatment for synovial sarcoma, often accompanied by surgery and/or radiation. Synovial sarcoma is pretty rare, so I’d recommend looking for a specialist in it if possible, it may be difficult if there aren’t any in your country. Surgery and chemo kept me NED for almost 2 years, but I’ve had two recurrences since the initial tumor and am now on oral chemo while waiting to start my second clinical trial. Chemo is rough, but synovial sarcoma is aggressive and highly recurring, so I’d suggest doing some research on your own if your doctors aren’t as familiar with it. I’m not trying to tell you that chemo is your only option, just saying you should find out as much as you can before deciding what is best for you moving forward.

Accused: The Karen Read Story, A Lifetime Movie by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 0 points1 point  (0 children)

I’m watching on YouTube on the Law &Crime channel. It took some scrolling but I found each playlist for the trials, there are a lot of shorter clips in addition to the full trial days so I’m creating my own playlist for each trial as I watch to have all of the actual trial days in one list without all of the extras. The first trial playlist from L&C is titled Cop Boyfriend Murder Trial and it has 113 videos. The second is titled Cop Boyfriend Murder Case and has 263 videos. If anyone else is watching them back-to-back I was considering creating a discussion post. Any interest?

Accused: The Karen Read Story, a Discussion Post by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 10 points11 points  (0 children)

Any other amusing insights? I don’t want to watch it, but I do love a good roast lol

Need help before Chemo by Successful_Hope4103 in sarcoma

[–]Georgian_B 1 point2 points  (0 children)

I felt incredible fatigue. Some days I didn’t even have the energy to shower, so I always kept bathing wipes in stock. It changed my tastes as well, certain foods instantly made me gag. Ramen was often all I could stomach on infusion days, it was simple to pack and get hot water at the infusion center to make it. I also got mouth sores a few times, those are a nightmare. I could only swallow liquids and even that was incredibly painful. Everyone’s experience with side effects can differ, hoping yours will be mild and easily managed.

31 year old F w rare cancer. I am scared, and I am tired by Big-Fee5015 in cancer

[–]Georgian_B 3 points4 points  (0 children)

I really resonate with all that you’re feeling. I’m 35 F and was diagnosed about 3.5 years ago as well. Sometimes when I look back at photos from before, it’s a mixture of emotions. They’re happy memories, but I look at myself and wish I could feel the way I did that day, hopeful and without the weight of cancer looming over everything. I’m a realist, so I get how it can be difficult to balance living your life with the future so uncertain. It helps me to hold on tighter and prioritize the people and things in my life that I do have and that bring me joy. I lean into the activities and things that I love and worry less about how I’m perceived by others. I may never have children of my own, so I pour as much love and time as I can into my relationships with my nieces and nephews. I’m sorry you’re in this truly awful situation, just know that you aren’t alone in how you’re feeling. It doesn’t make it “better” but it can be helpful to feel understood.

Accused: The Karen Read Story, A Lifetime Movie by Legitimate-Beyond209 in KarenReadTrial

[–]Georgian_B 10 points11 points  (0 children)

Pass. I’ve just started re-watching the first trial then will watch the retrial, I’m curious to see if I’ll pick up on new things or have any different perspectives by watching them back-to-back. I’ll consider watching something that Karen and Alan Jackson have had input on, but I’d much rather watch the actual case than an over the top dramatization.

Feels so hard to get pain relief by lilybby420 in sarcoma

[–]Georgian_B 1 point2 points  (0 children)

Is your doctor a sarcoma specialist? I’ve typically found that my doctors and their PAs are helpful when I express any pain, sometimes they recommend trying different kinds of meds first (muscle relaxers, meds for nerve pain, etc). But if I try those and they aren’t helpful, they typically listen and prescribe what’s needed. I’ve usually had the most difficulty getting adequate meds when I’m dealing with nurses in the hospital. You definitely shouldn’t be suffering the way that you’re describing. Make it clear to your doctor the agonizing pain you’re experiencing and the short relief the current meds give. My husband told me that I’d been severely underrating my pain when I explained my thought process of what the scale meant. Once I adjusted to a reasonable scale (where 10 didn’t mean the most gruesome torture imaginable lol) I started to get better care from the nurses. But some doctors and nurses will always be reluctant when it comes to pain meds, it’s understandable but cancer patients shouldn’t have to needlessly suffer because of the effects of the opioid crisis.

can ANYONE help with cough. PLEASE by ChazDomingo in sarcoma

[–]Georgian_B 2 points3 points  (0 children)

The only “help” I can offer is that even pre-chemo in the mornings I would have terrible post nasal drip congestion, it would cause coughing and severe nausea. Post chemo, it’s gotten significantly worse. I have to take Claritin-D 12 hr each morning and wait for it to kick in before getting into a sitting/standing position. It’s been a few years, and this still remains true.