6

“I don't think yesung hyung is doing very well. I'm concerned about the tumor symptoms. They seem to be getting worse”. Siwon discussing about yesung’s condition with heechul and leeteuk. Leeteuk’s phone ringing, ‘the vision problems that yesung is having (basically no vision in upper right quadrant) is not going to improve because it's caused by the tumor location, not by swelling. Just came for MRI as usual and we talk more later on’. Siwon and heechul seriously look at leeteuk, “why?”.
Yesung had the MRI yesterday. The radiologist is on vacation so they didn't have anyone look at the films with them afterwards. Of course they looked at them themselves after they got home, and it looks to them like the tumor is larger. they'll know for sure after they see Dr. Nicholas next day. 

They saw Dr. Shin that afternoon, and he said the tumor is larger. The official radiology report isn't done yet. Apparently they can't find the films from the last MRI to make a comparison. Dr. Shin said they would have to print new ones. Luckily, they had taken their copies for him to look at today. When they asked Dr. Nicholas what the size was now, he said it was hard to measure, but it's big and diffused. 

Eunhyuk surfing the internet and compare what he found with what the doctor gave him, There are several options for treatment at this point. He going to try to list them with their pros and cons here, partly for their information and partly because writing things down like that helps him to think things through. Ultimately it's going to be yesung's decision, but he told yesung he would let him know his preference, once he decide what that is. Dr. Shin would like them to let him know what they decide by the first of next week. There are 2 options for further conventional treatment which yesung could try. They are Carboplatin or Tamoxifin. 

Carboplatin is a chemotherapy given every 3 or 4 weeks by IV. The side effects are similar to the PCV chemotherapy that yesung had. Blood counts are likely to go down and he is likely to experience nausea. It seldom shrinks the tumor, but could stop growth for several months. Tamoxifin is used in low doses to treat breast cancer. For brain tumors, they use 10 times the breast cancer dose, which would be about 12 large pills per day. It doesn't affect blood counts but it could make Paul feel unsteady and affect his balance. Again it could stop tumor growth for several months. O6BG is a drug that is used to help overcome tumor resistance to chemotherapy. They are both given by IV every 6 weeks. The first time yesung would be in the hospital 2 nights and after that it would be on an out-patient basis. Side effects are likely to be low blood counts. This may not actually be a possibility because the first opening that they have is Oct. 22, and Dr. Nicholas doesn't want to wait that long to begin treatment. They have already decided the optimum dose to give, so if yesung got in this one, it would actually be like being in a phase 2 trial. CPT-11 and Taxol are both being used for other cancers. (A brain tumor newsletter that I have says CPT-11 has been effective in colon cancer and is now being tested for brain tumors. I don't know what Taxol has been used for.) They are both given by IV also. Dr. Shin didn't know how often. Side effects are likely to be low blood counts. Dr. Shin has to check first to see what dosage they are at in the trial. They know it takes a higher dose for brain tumors, and they may not be up to that dosage yet, so it's possible it may not make sense for yesung to be in this one. 

Eunhyuk cy update:
I guess the big question at this point is do we go with a known drug that may stop tumor growth for a couple of months but is unlikely to shrink the tumor, or do we go with an unknown which may shrink the tumor, but may also do nothing. I think at this point, I'm leaning toward a clinical trial in the hopes that it will shrink the tumor and alleviate some of yesung's symptoms. I still have a lot of thinking and praying to do though before I decide for sure what my preference is. I'm sure you will all be praying too that we will make the best decision. 


yesung had a blood test today, and his platelets are 89,000, which is still too low for the clinical trial. They have an appointment with Dr. Shin to discuss options. One possibility that the nurse they talked to today mentioned is to get the CPT-11 without the cyclosporine. It would have to be a higher dose of CPT-11, so the side effects could be pretty nasty. They also ask about the possibility of a platelet transfusion, or some other clinical trial. Anyway, they're not giving up yet. 

Heechul cy update:
It was recommended that our little yesung take tamoxifen, which is a chemotherapy that is used for breast cancer. They would start at 120 mg/day and gradually escalate to 240 mg/day, which is about 10 times the amount that is given for breast cancer. The reason he's recommending this drug is because it doesn't affect platelet and other blood counts. It has been effective with slow-growing tumors, which yesung's seems to be. What it does is get inside the tumor cells and turn off growth on a continuous basis. I hope it will work out.

Leeteuk cy update:
I’ve not updated about our sungie lately, sorry for that. Here are some update. It's taken every day as pills. yesung would get 10 weeks of treatment and then they would do an MRI to see if it's helping. The main side effect is a feeling of dizziness and loss of balance. That is dose related, so if he starts feeling dizzy, they just reduce to the dose back to where he didn't feel dizzy. Dr Shin thinks the previous chemotherapy is the culprit on the platelets. I had gone through my notes and written down the platelet counts for all of the times yesung had CBC's while on the chemotherapy, and when I showed it to Dr. Shin he said that yesung's platelets never did recover during the chemotherapy as high as they should have. He said that if yesung's platelets start to go down that low they would do a bone marrow biopsy to find out if he has leukemia or something like that. There's nothing in his blood tests now to indicate that he might have something like that, so it's not anything to worry about. 


“hyung, if they gonna do bone marrow biopsy, it’s gonna be really hurt him badly right? I saw it on tv hyung it’s bad. They do it while the patient is in conscious”.eunhyuk asking his hyung worried of yesung who sleeping on kangin lap. “they’ll do it if his blood count go down again, I hope it wont”.”it must be hard on him”, kangin softly touch yesung faced. “he looks so calm while sleeping”, heechul wipe yesung palm. “and cute too, he used to be so sensitive while sleeping but now he just too weak..”, siwon add some.

Siwon cy update:
A minor problem is that yesung has thrush in his mouth, which Dr. Shin described as athlete's foot of the mouth. That's caused by the Decadron. Dr. shin prescribed some medicine, and I guess I'd better go pick it up now.

Leeteuk cy update: 
With all of the Christmas activities I think I forgot to tell you all that yesung is having an MRI this week on Wednesday. The original plan had been to have an MRI after 10 weeks of tamoxifen, but Dr. Shin’s nurse called me last week and said that Dr. Shin had asked her to set up an MRI for yesung on Wednesday. We were already scheduled to see Dr. Shin on Wednesday, so yesung will get the MRI and then we'll see Dr. Shin, which means we'll find out the results right away. I'm not sure why he has ordered the MRI, but I'm glad he has because I don't think the tamoxifen is doing much. Yesung health seems to be declining quite rapidly. Yesterday was a particularly bad day for him. 

Sungmin always taken care of yesung medicine and has done fine. (Each day he puts the proper pills in little containers for breakfast, lunch, supper, & bedtime.) This last week, however, there have been several occasions where he had the wrong number of pills or the wrong kind of pills in the little containers. Then yesterday instead of taking the pills out of the original containers like he used to, yesung dumped a whole bunch of pills from all of the containers onto his plate, picked out what he thought went in each of the little containers, and put the rest back into the original containers. However, he ended up with the wrong pills in the little containers and the wrong pills back in the original containers. Luckily the pills all look different so he was able to get them back into the right containers.fortunately nothing bad happened. 

yesung had an MRI and after that they went to see Dr. Shin, who looked at the films with them and compared them with those from the last MRI. The tumor does appear to be growing, particularly in an upward direction. “I really wasn't too surprised because it has seemed to me that yesung's symptoms have gotten quite a bit worse this past month, right?”. Leeteuk nodding his head.

As they reached home, yesung was put on his bed as usual by kangin. Yesung didn’t talk much nowadays and he often sleeping and resting in his room. Dr. Shin said the tamoxifen doesn't seem to be working, so he suggested that yesung stop taking it. yesung's platelets are still low and sometimes patients can go to another part of the country for an initial treatment and then their local doctor can do all of the follow-up treatment. 
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Leeteuk cy update:
Dr. Shin said he should get back to us in about a week, but for the time being yesung will not be getting any treatment, other than Decadron for the swelling and Phenobarbitol to prevent seizures. I suspect that means even more tumor growth. yesung has been easily confused lately, and often gets upset when he has difficulty doing things on the computer, turning on the stereo, making phone calls, etc., 


Few weeks after that, yesung have gone through chemo, kangin and siwon taking him to the hospital. “hyung, it’s time now.”siwon helping yesung up from his bed. “siwon ah thank you for being with me. Siwon just smile back at yesung. When they went home later, yesung as usual will deeply asleep his body become very weak, he lost his weight, and don’t have appetite to eat. His hair start falling too. He didn’t talk much with others. When he woke up, hankyung and heechul bring some porridge for him. While he eating, yesung feel like vomiting thus he put his hand on his mouth calling heechul, “hyung…”in whispering voice. "waeyo?waegure?” heechul panicly asking yesung back while hankyung take basin for yesung and then he vomit all things in his stomach.after clean up yesung take his medicine. “hyung, thank you for accompany me all this time.”yesung whispering to heechul. “yah..why you said that. It’s nothing just sleep and have a good rest” heechul holding his tears.

In living room.”how is he?”shindong asking.”asleep for now. Teukie ah.. He even throw everything out when he’s eating something. It must be hurt to keep vomiting like that”. Everyone just stay quiet.

Next morning, shindong went to wake up yesung for his medicine but yesung didn’t respond. This make shindong really panic as yesung is very pale lying weakly on the bed. “hyung?hyung?yesung hyung?” eunhyuk who heard it come in” hyung?waeyo?”..shindong ignore eunhyuk and keep waking up yesung. “I should tell others” eunhyuk quickly rushed out.