Anyone out there with Thymoma/Thymic Carcinoma

Posted by allisonsnow @allisonsnow, Jan 5, 2017

Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.

@allisonsnow

It has been a busy summer it seems…a lot of babysitting…this week for example had the 3 that live nearby for 3 days next week the one that just graduated is coming down for a week that will be fantastic !!! He has been so busy ,getting ready for college, that I have not seen him much.but it has all added to my stress levels. My pain has increased A LOT and all this humidity has made my breathing almost impossible. I have Dr. appts first of Sept I guess they had planned for Oct. but I really didn’t feel I could wait that long

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Hi Allison, @allisonsnow

Thanks for checking in with us. I’m so pleased that you are getting to see your grandchildren, I can tell that you are enjoying that. I am sorry to hear about your breathing problems and increased pain, though. Stress and hot weather can certainly can add a new dimension to health problems. Perhaps you will get more time to rest this coming week – high school grads are easier to entertain than little ones. I’m glad to hear that you can get in to see your doctor earlier than originally planned. I’m sure that you will feel better after you talk with him/her. Will you keep us posted as to how you are doing?

Teresa

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Yes I will. I have two days of appointments first week of Sept. and see my pulmanologist Sept. 27th.

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@andylevine

I read through your entire chain, and quite a story. I was diagnosed with stage 2B thymoma about a year ago (12/15). I had an intense episode of pain in my left shoulder in September 2013, and while I thought it was a rotator cuff tear, it was diagnosed as a rare autoimmune condition known as Parsonage Turner Syndrome (PTS). My symptoms matched almost identically with intense pain, followed a week letter by a complete resolution of pain, but a loss of 90% of the motor strength in my left arm. I spent two years in PT regaining function and strength, and then the pain returned. This time it was clear there was a cuff tear, but it was not caused by trauma, but rather the tendon was pulling apart due to the muscle imbalance caused by the PTS. The top ortho surgeons would not operate noting that the location of the tear and the location of the pain did not correlate. Finally I found a surgeon to operate, though he warned it could be unsuccessful. I had to do something to alleviate what had become debilitating pain. That was at the end of 11/15. I then went for a pre-op clearance at my primary care doctor, who administered an EKG. He came in to state there was an anomoly, and ordered an echo cardiogram the next day. The result was that I needed immediate aortal valve replacement surgery. Penn Hospital’s chief of thoracic surgery then examined me, and basically would not let me leave the hospital, noting that he didn’t give me two weeks to live with this heart condition. Before I knew it surgery was scheduled, and just before the surgery they performed a CT scan of my chest. The doctor noted that the thymus appeared a bit inflamed, but advised this happens constantly. The surgery went well, and in the process he removed my thymus. A week later, while doing very well in my recovery, the surgeon visited me with an oncologist, and they noted this was the first time in 30 years that the thymus came back positive for cancer, in this case stage 2 thymoma. I went through 7 solid weeks of proton therapy treatments, which were quite debilitating after heart surgery, but it appears successful. The irony is that had my shoulder not hurt so much, I would never have found out about my heart issue. That heart problem should have been tracked my entire life, and the need for the valve replacement was inevitable. But had I been properly checked over the years, the surgery would probably have occurred a couple of years earlier, in which case they would have missed the cancer. As you’ve come to learn, once this type of cancer becomes symptomatic, the issues become very complex. Now what they’re studying is whether the PTS itself was a manifestation of the thymoma, which is frequently linked to rare autoimmune disorders. A year later, and thankfully I am in terrific health. I went from 225 pounds to 163 pounds during this ordeal (and mind you the 225 was with 13% bodyfat). I regained about 40 pounds very carefully and have worked out like a fiend to get in the best shape possible. Now I attend the proton treatment alumni functions at Penn to try to give reassurance to patients entering treatment. Statistically, I really should have won millions in a lottery, but I’ll take my health thanks.

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Hi @andylevine,
I’m re-reading your post here after seeing your messages in the Parsonage Turner Syndrome discussion. What a sequence of events that led to the finding of thymoma cancer. Did treatment end with the removal of the thymus or did you have other treatments as well? Symptoms?

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@andylevine

I read through your entire chain, and quite a story. I was diagnosed with stage 2B thymoma about a year ago (12/15). I had an intense episode of pain in my left shoulder in September 2013, and while I thought it was a rotator cuff tear, it was diagnosed as a rare autoimmune condition known as Parsonage Turner Syndrome (PTS). My symptoms matched almost identically with intense pain, followed a week letter by a complete resolution of pain, but a loss of 90% of the motor strength in my left arm. I spent two years in PT regaining function and strength, and then the pain returned. This time it was clear there was a cuff tear, but it was not caused by trauma, but rather the tendon was pulling apart due to the muscle imbalance caused by the PTS. The top ortho surgeons would not operate noting that the location of the tear and the location of the pain did not correlate. Finally I found a surgeon to operate, though he warned it could be unsuccessful. I had to do something to alleviate what had become debilitating pain. That was at the end of 11/15. I then went for a pre-op clearance at my primary care doctor, who administered an EKG. He came in to state there was an anomoly, and ordered an echo cardiogram the next day. The result was that I needed immediate aortal valve replacement surgery. Penn Hospital’s chief of thoracic surgery then examined me, and basically would not let me leave the hospital, noting that he didn’t give me two weeks to live with this heart condition. Before I knew it surgery was scheduled, and just before the surgery they performed a CT scan of my chest. The doctor noted that the thymus appeared a bit inflamed, but advised this happens constantly. The surgery went well, and in the process he removed my thymus. A week later, while doing very well in my recovery, the surgeon visited me with an oncologist, and they noted this was the first time in 30 years that the thymus came back positive for cancer, in this case stage 2 thymoma. I went through 7 solid weeks of proton therapy treatments, which were quite debilitating after heart surgery, but it appears successful. The irony is that had my shoulder not hurt so much, I would never have found out about my heart issue. That heart problem should have been tracked my entire life, and the need for the valve replacement was inevitable. But had I been properly checked over the years, the surgery would probably have occurred a couple of years earlier, in which case they would have missed the cancer. As you’ve come to learn, once this type of cancer becomes symptomatic, the issues become very complex. Now what they’re studying is whether the PTS itself was a manifestation of the thymoma, which is frequently linked to rare autoimmune disorders. A year later, and thankfully I am in terrific health. I went from 225 pounds to 163 pounds during this ordeal (and mind you the 225 was with 13% bodyfat). I regained about 40 pounds very carefully and have worked out like a fiend to get in the best shape possible. Now I attend the proton treatment alumni functions at Penn to try to give reassurance to patients entering treatment. Statistically, I really should have won millions in a lottery, but I’ll take my health thanks.

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I had 7 weeks of proton treatments but now have semi annual scans. The shoulder pain resolved shortly after the tumor was removed. I still have a torn rotator, but it’s not painful anymore. I have small residual effects from PTS, and you can still see muscle denervation in my infraspinatus.

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I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors…. I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.

So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out…. is there such a thing as Benign Thymoma? Depends on what I’ve read…. some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign…. is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.

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@jacquie1

I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors…. I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.

So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out…. is there such a thing as Benign Thymoma? Depends on what I’ve read…. some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign…. is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.

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Hi @jacquie1
My apologies for taking so long to respond to your post. It slipped by me for some reason. You sure have seen a lot of specialists. What did you find out at your appointment with the surgeon. Is it thymoma?

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@jacquie1

Welcome to Connect – I'm so glad that you posted about your experiences. It sounds like you have had a lot of frustration in finding an answer to your many symptoms.

I hope to hear from you again.

Teresa

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@jacquie1

I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors…. I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.

So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out…. is there such a thing as Benign Thymoma? Depends on what I’ve read…. some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign…. is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.

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@colleenyoung AS I look at the last entries it seems as thought as decade has past. I see I told you that I was goimg back to be tested the results were not good and chemo was begun immediately. They hit me pretty hard did infusion and oroal Kept that going until the halfway point which was Jan. I think. Results came in and results showed…………………….nothing……………………..well I shouldn't say that, there was growth……in the plueral of my lung inside of my lung and they felt next would would spread to othe organs BUT THE KICKER IS it is sarcoidoossis the oncologist says that is not really his concern because it is benign tissue and he only deals with malignant tunors so I should make an appt. with Dr.Vassallo in pulmonology . So now I am waiting on that.

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@jacquie1

I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors…. I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.

So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out…. is there such a thing as Benign Thymoma? Depends on what I’ve read…. some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign…. is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.

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@allisonsnow

I am sorry to hear that your treatment was not more successful.

I hope your next appointment with Dr. Vassallo goes better. What sort of symptoms do you have with sarcoidosis?

I look forward to hearing from you again.

Teresa

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@jacquie1

I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors…. I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.

So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out…. is there such a thing as Benign Thymoma? Depends on what I’ve read…. some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign…. is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.

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sarcoidosis symptoms can be pretty far reaching , around the lung (just what I need) and then on to other organs, most often the liver but my liver functions look "great". The first time they were positive was a large grouping around my hip. I was told I was having a biopsy by my spine for what looked like cancer. When they walked into the room to do the procedure they are marking me only they are marking my left HIP NOT MY SPINE !!!!! after a couple calls I find out "they" had decided to test in my hip area as they looked the same and it was easier to get to. The change didn't sit to well with me don't like last min. suprises. What's done is done and it was sarcoidosis. Now it seems to be everywhere. But symptoms can be joint pain, cough that hangs on, dry eye weight gain or loss…..all over the place and pretty minimal at first. I just haven't been my usual perky self hahaha. Just been so tired. Tired of being tired, tired of the pain and listening to people on the news say I don't need opiods …………….its all in my head …or I am an addict or why don't I try ??????? it cures cancer !!!!!! SORRY I am just a bit crabby, have been to 3 funerals in 4 weeks all to young 1 stroke and 2 cancer and it was just the anniversary of my daughters death.
Life is a gift and I am truly grateful some days the battle I fight everyday has made me weary and I can't be my usual chipper self.
I love everyone on here and that has offered and given me so much support. Going to ask the hubby for a back rub and try to get some sleep!!! Good night to all

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@jacquie1

I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors…. I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.

So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out…. is there such a thing as Benign Thymoma? Depends on what I’ve read…. some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign…. is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.

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@allisonsnow

I am so sorry to hear of your pain and your new diagnosis. Your attitude always remains so good when you say, "Life is a gift and I am truly grateful some days the battle I fight everyday has made me weary and I can't be my usual chipper self." I'm always inspired by that attitude!

I have attended funerals lately and have friends in ICU and hospice so I know how it can create a sense of despondency. I am always impressed at how you create your attitude by good thinking.

I hope you had a good night's sleep and I look forward to hearing from you again!

Teresa

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@allisonsnow

My cancer story is a long (luckily) and convoluted story. Symptoms on the onset are very benign as easily attributed to so many other things. My main symptoms were a congested cough that would not go away (had it about 6 months) trouble catching my breath, but I was 50 and had put on some weight . My primary kept saying that though it sounded horrible she didn’t hear anything in the lungs (as far as pneumonia ) so no chest x-ray was ordered. Last week of June 2009 I got a 2nd opinion he immediately ordered an x-ray then showed me exactly where the pneumonia was showing up in my right lung gave me an RX and sent me home. At dinner I get a phone call from the Dr. and he said ” I am so sorry’ I do not have pneumonia but an anterior mediastil tumor (??) and again ” I am SOOOO SORRY ” he said a ct scan was already ordered . From the number of I an sorrys that were said I said /asked the results of this are not going to be good are they, as in terminal .and his answer was yes. So the CT was done had to wait over the 3 day 4th of July weekend for results ( by this time I probably had logged a hundred hours of research on the computer) the Tumor measured approx. 3×6 had a biopsy again waited over a weekend was positive and we met with my first oncologist. I was expecting a Thymoma diagnosis but she said Thymic Carcinoma ,when pushed by me said she would be surprised if I made it to Christmas she also said that she doubted a surgeon would be bothered to meet with me because there was no point it was to far advanced. BOTHERED I couldn’t believe she said a Dr. couldn’t be bothered with my case. LUCKY for me she was wrong and the wonderful Dr. Deuchamps ( I am sure I spelled that wrong) who was head of thorasic surgery took my case and performed the surgery. By this time the tumor was approx. 14 x 6 x ? had invaded my right lung paralyzed my right phrenic nerve and had wrapped around my heart penetrating the peri-cardiem . Dr. thought surgery went very well. After some recovery time I had 28 sessions of intense Toma therapy radiation. He said the radiation would increase the length of time before recurrence, which I was all for considering most patients die after recurrence, I had almost reached the magic 5 yrs when it came back. During that 5 yrs I was in the hospital over a dozen times, more than once my husband was told to be prepared for my death but I keep defying the odds. With the recurrence I was told my only option was chemo and that I was now in what was considered palliative care and the hope was just to shrink it and stop new growth. It was a tough 6 months but I made it thru. My hair, eyelashes, eyebrows have grown back. I have been complaining of severe lower back pain and during a scan to try to find cause the radiologist noted he saw what he thought may be “drop” metastisis and suggested a chest CT. for what ever reason while my primary covered with me the rest of the results of the scan (bulging disc etc. ) she saw no reason to mention this. I only knew because I had just done a print out of the results at home (because she waited 10 days to call me) . I go to Mayo every 3 months for scans and bloodwork and have an apt middle of Jan. so I will find out then who was right and if I should have put more urgency into it. I really wanted a nice holiday season and to be thankful for my many blessings so I have just put it out of my mind and enjoyed my 5 grandsons.
Believe it or not this is the condensed version !!!! LOL I have had some crazy and beautiful things happen to me during this journey.

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Hello Allison! We have been living parallel lives. In 2012, I also had profound shortness of breath and thought I might have pneumonia. My PA felt it was just pleuresy and wanted to send me home, but my gut insisted that I needed an x-ray. So I pushed for one. That was when the anterior medialstinal mass was discovered. That triggered a follow-up CT scan, but of course, like you, this fell over the Fourth of July holiday, so I had to wait a few days.
By the day of my CT scan I awoke to petichi on my left shoulder and a big bulge at the base of my neck from the blood clot we would find later that morning. I was admitted immediately, and for treatment and removal of the dangerous blood clot, but it took weeks for the cancer to be accurately diagnosed.
Figuring out what kind of cancer it was proved to be tricky. The biopsy was done and sent to Mayo Clinic, as we live in western Montana and they couldn't identify the cells. I was ultimately diagnosed with Squamaous Cell Thymic Carinoma and scheduled for surgery in late July. My main tumor sat directly on top of my heart, but it had invaded my chest cavity everywhere, as well as three veins, with my bracheocephalic vein incurring a blood clot from my left elbow to my sternum. As a very aggressive and invasive cancer it had also wrapped around both of my phrenic nerves, and through my PET scan was found in many lymph nodes in my left clavicular area (thirty were removed). My right phrenic nerve was sacrificed during surgery, but was surgeon was astute enough not to try to unwrap it from the left phrenic nerve, as I would now be a a ventilator. Like you, I went home on oxygen 24/7, and had to sleep upright just to be able to breathe. I then had months of weekly chemo whie the tried to plan how to do the radiation without further damaging my heart or usable lung. Eventually I was referred to MD Anderson Cancer Center in Houston for 7 weeks of daily proton therapy radiation, combined with more chemotherapy. But, I survived after a grim prognosis and I too have beaten the odds like you, and lived to see two of my sons married and we just welcomed a new grand daughter into the world.
I am so blessed to be here! Yes, also the Reader's Digest condensed version, but I am tired and off to bed. Hope we can chat more later.

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