Thanks to everyone for your kind words on the passing of my father I also just 
lost my aunt, like a second mother to me. I deeply appreciate your support and 
friendship. My thoughts and prayers are with each of you for good news as you 
keep battling on with CML. 

Sent from my iPhone

> On Jan 25, 2015, at 12:22 AM, 'Susan Zimmerman' via CMLHope 
> <[email protected]> wrote:
> 
> Hey Greenie and all,
> 
> So sorry to hear you're having these struggles.  Nausea is like having the 
> flu all the time.  The doc (our mutual Altman) prescribed a nausea pill when 
> I began bosulif. I've used it about 4 times since going on bosulif.  (10 mos. 
> ago).   If it continues after you've gone off gleevec for a week or more, I 
> would ask for some.  You have lots of options, but I truly hope a quick 
> vacation will do the trick.  We might not get to meet in New Carlisle if you 
> can't get this problem solved~!  And I had such a good time meeting with you 
> and your sweet wife, we'll need to do it again when you are in the area.
> 
> I went to Chicago Northwestern Medical again last Thursday.  I now get 3 
> months in between visits since I'm in remission.  I do have to go to a 
> cardiologist to check out a few chest pains I've had, and a neurologist for 
> the shakes that have been going on for far too long.  I'd like to blame 
> everything on bosulif, but I don't think I can.  
> 
> You are sure in my thoughts and prayers about your nausea.  Enjoy your 
> vacation from gleevec and sure hope it helps!  
> All you guys have been posting so much.  I read, but I can't always write 
> with other things going on.  This time I'm reporting a praise report about 
> being in remission, and asking for prayers about the chest pains and 
> shakes!!!  Rearranging my blood pressure medicine and one other to see if it 
> improves things before the neurologist.  It was too strong I think....we'll 
> see.  God bless you all!!!
> 
> 18's, 
> 
> Susan 
> -----Original Message-----
> From: 'Icandoallttc' via CMLHope <[email protected]>
> To: cmlhope <[email protected]>
> Sent: Sat, Jan 24, 2015 3:25 pm
> Subject: [CMLHope] Greenie
> 
> Hi Greenie 
> Check your potassium and ect.   You might have an imbalance.   That happened 
> to me when gleevec quit working.   I was so sick.   Do you have diarrhea?    
> I had both.   I finally started taking psyllium seed--crushed--you can get 
> them at health food store. Just go by the directions.   
> It cured the diarrhea but I had to finally change tkis. 
> 
> 
> Blessings Jeanie 18's
> 
> On Jan 24, 2015, at 11:39 AM, "'Icandoallttc' via CMLHope" 
> <[email protected]> wrote:
> 
>> Hi Richard and hang in there.   I wake up with nausea every morning which I 
>> think is the hydrea.  Do you eat a big meal with gleevec?  I know I had to 
>> and no spicy foods.  Your success on gleevec has been great.  It quit on me 
>> after 5 years.  You could just have a bug.  
>> Good luck and blessings. 
>> Jeanie
>> 
>> Sent from my iPhone
>> 
>> On Jan 24, 2015, at 10:56 AM, Myvety2k via CMLHope 
>> <[email protected]> wrote:
>> 
>>> Hi to my friends in our group,  well I've been on Gleevec for 15 years and 
>>> 14 days all of a sudden for the last 4 days I'm having nausea problems.  
>>> I'm taking some promethazine that helps some what but it's not a fun thing. 
>>>  I have no idea what started it either.  I had this problem before when we 
>>> lived in Springfield, MO. I got over heated and got hit with nausea every 
>>> day for a little more then 2 years then I awoke one morning and it was like 
>>> someone turned off the switch and it was gone.  This time of the year it's 
>>> not hot here so I know that's not what caused this problem.
>>>  
>>> I'm going to take a Gleevec break for a week or two to clean out my system 
>>> and hope that I get back to normal.  I did this before about 6 years ago 
>>> when I had a sinus infection and the doctor back in Indiana put me on and 
>>> anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. 
>>>  After getting blood work some cancer cells did show back up in my blood 
>>> work but after stating Gleevec again the next test showed that I was clean 
>>> again. 
>>>  
>>> My doctor at that time was doctor Tallman and he gave me a call and said 
>>> "well if it worked before it will work again" and that was that.  So I have 
>>> my fingers crossed to see what happens.  I can't stand this nausea problem, 
>>> my heart goes out to the women that have babies and have to put up with 
>>> nausea.  I just hope it's the Gleevec again and not something else.  My 
>>> blood counts are O. K. so I'm not worried about that.  This does not help 
>>> my anxiety problems
>>>  
>>> Will keep you all up to date as how things go.
>>>  
>>> greenie
>>>  
>>> In a message dated 1/23/2015 11:35:02 P.M. Eastern Standard Time, 
>>> [email protected] writes:
>>> Seventeen and on my first adventure  this wonderful world we live in.
>>> 
>>> Richard H. 
>>> 
>>>> On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote:
>>>> That's cute Richard--how old were you?
>>>> My IV went in good-no swelling.  
>>>> This morning I am sick-- sore throat and mucus.  
>>>> Glad everything went good Sherri but couldn't they give you something for 
>>>> pain??
>>>> Blessings Jeanie 
>>>> 
>>>> Sent from my iPhone
>>>> 
>>>> On Jan 23, 2015, at 12:03 AM, Richard H <[email protected]> wrote:
>>>> 
>>>> May I add my sea story of needles,  I don't like needles but do not have a 
>>>> phobia.  When I arrived  at boot camp the first thing was get our shots. 
>>>> We walked through a line getting shots in both arms as mentioned.  They 
>>>> were using hugh syringes and had large pillows with the needles that was 
>>>> changed while we were stepping in front of them. Someone was calling a 
>>>> slow cadence of step, step. As each recruit stepped He was given a shot in 
>>>> each arm.  All of a sudden the corpsman I was getting ready to step in 
>>>> front of yelled "BRING BACK MY NEEDLE."  The recruit in fount of me had it 
>>>> hanging in his arm.  When I received the 4 pricks for allergy testing I 
>>>> then had to sit in the dentist chair I promptly passed out. 
>>>> 
>>>> Richard H.
>>>> 
>>>> 
>>>> 
>>>> On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote:
>>>> Jeanie, Needles lord knows I hate them.  The first time I had a blood test 
>>>> it was to get married.  My  Doctor lived 3 blocks away form me and I 
>>>> worked for him when I was in High School.  They did the blood work and he 
>>>> walked in after and took one look at me and he put is hand behind my head 
>>>> and pushed it down and told me to pushed as hard as I could to keep me 
>>>> from passing out.
>>>>  
>>>> Then when I went into the Navy I was on active duty for a year and a haft 
>>>> they found out that I didn't get any of my shots.  Well you know what 
>>>> happened then, I received them all at once, both arms.  So years go by and 
>>>> I end up with CML and we all know about needles.  Yes, some are good and 
>>>> some are bad.  I had to get blood work this Monday and I think the lady 
>>>> took the needle outside and scraped it on the pavement plus I think it was 
>>>> square and bent. I think it when through my arm and out the other side.
>>>>  
>>>> And the first BMB all they gave me it was so          much fun that I 
>>>> asked them to do another one. Ha, Ha.  After about 10 or 11 of them I 
>>>> asked to be put into lala land which they did but I had to have someone 
>>>> drive me home.  My wife has to give me a shot of testosterone every two 
>>>> weeks, the needle is 1/1/2 in long another fun shot.  So for me they do 
>>>> the molecular blood work and no more BMB.  Thank you.
>>>>  
>>>> Take care and hang in their,
>>>>  
>>>> greenie
>>>>  
>>>> In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, 
>>>> [email protected] writes:
>>>> Hi Marty. 
>>>> How are you?
>>>> I am going to have the endoscopy today.  First I will go to the blood area 
>>>> and have blood checked. Then to dr for consultation.  Then to have the 
>>>> endoscopy.  
>>>> Long day. 
>>>> Needles are no fun but we get used to them.  Some draws are good some bad. 
>>>>  
>>>> Pray for me and all in need. 
>>>> Love Jeanie 
>>>> 
>>>> Sent from my iPhone
>>>> 
>>>> On Jan 21, 2015, at 7:52 AM, Marty Gartenberg <[email protected]> wrote:
>>>> 
>>>> Hi Jeanie,
>>>> 
>>>> You have been through so much it's about time that you got a break or two. 
>>>> Not feeling that IV go in and no black and blue afterward then having a 
>>>> BMA with little or no pain. 
>>>> 
>>>> Well, two out of two ain't too bad is it? <360.gif>
>>>> 
>>>> When I was a kid I had a phobia, and it was needles. I hated them that on 
>>>> the day my school was giving shots I told my mother that I was sick and 
>>>> couldn't go to school that day. So, she kept me home and I went to school 
>>>> the next day. Guess what? I got the shots that day.
>>>> 
>>>> OK I'm in the army and in those days you had to walk down an isle to get 
>>>> all of your shots. They used a machine that looked like a gun and I 
>>>> thought it wouldn't hurt. Guess what? It did!
>>>> 
>>>> Then when I was 45 years old I got CML and went for a bone marrow 
>>>> transplant. So many, many needles that I just got used to them. Then 
>>>> having 17 BMB's. It looks like needles and me are just like twins, always 
>>>> together. Not to mention that one of the aspiration needles break off and 
>>>> lodge in my illiac. So in go more needles and an in-cession follows to 
>>>> remove that needle. Then four stitches, of course using another needle.    
>>>>   
>>>> 
>>>> So about 4 years ago my kidneys fail and I go on dialysis. Two very large 
>>>> needles are stuck into my arm every Monday, Wednesday and Friday, and they 
>>>> stay in there for four hours.
>>>> 
>>>> I wouldn't say that I have gotten used to them but maybe I just don't pay 
>>>> that much attention to them anymore.
>>>> 
>>>>  So much for any phobias., but life goes on. Hopefully I              will 
>>>> be getting some more needles for a kidney transplant soon. Now doesn't 
>>>> that sound warped from someone that had a phobia against needles? It just 
>>>> all depends on how one looks at it I guess...
>>>> 
>>>> 18's,
>>>> 
>>>> Marty
>>>> 
>>>> 
>>>> 
>>>> On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope 
>>>> <[email protected]> wrote:
>>>> Hi Marty and thanks so much for that uplift.  I have been dreading it for 
>>>> some reason.  
>>>> I pray that you get your kidney soon-- I know those fistula operations are 
>>>> tedious.  
>>>> The procedure I dread most is the IV. 
>>>> My last one last week was a miracle.   The nurse put it in and I didn't 
>>>> feel a thing.  Later I looked for the black and blue mark left by the IV 
>>>> and no sign at all.  I have never had this before.  It's usually black and 
>>>> blue and swollen. 
>>>> My Bma has hurt very little. Thank The Lord!!!
>>>> 
>>>> You are our spice of life and thanks for being there for. And thanks to 
>>>> all if you for your prayers and uplifts. 
>>>> Blessings
>>>> 18's jeanie<emoji_u1f42c.png><emoji_u1f42c.png>
>>>> 
>>>> 
>>>> Sent from my iPhone
>>>> 
>>>> On Jan 20, 2015, at 10:06 PM, Marty Gartenberg <[email protected]> wrote:
>>>> 
>>>> Hi Jeanie,
>>>> 
>>>> Good luck with your endoscopy. They usually do put you out for that 
>>>> procedure. I don't know if they will use a Propofol cocktail but if they 
>>>> do you will go to sleep and when you wake up you will still think that the 
>>>> procedure was not yet done. Very good sleep with no after effects. I have 
>>>> had at least a dozen of them. Every time they operate on the fistula in my 
>>>> arm they use it. It looks like I will be going in for another procedure 
>>>> for my fistula, there is a narrowing in two sections. This will make 13 
>>>> procedures in the last 12  months. I sure hope that a kidney transplant 
>>>> will be coming soon.
>>>> 
>>>> I have to share a story about my anesthesia doctor. She knows me so well 
>>>> that we are on a first name basis. So, the                  last time that 
>>>> I had to be put out I asked her if I could "knock myself out" Of course I 
>>>> was only kidding but she told me that she would let me do it to myself.
>>>> 
>>>> So, i'm in the operating room and she is standing over me and she puts the 
>>>> oxygen mask on my head and as she is holding the needle that is connected 
>>>> to me IV she tells me to put my thumb on the plunger but not to push it 
>>>> until she tells me so. 
>>>> 
>>>> Ok I got my thumb on the plunger and she tells me to push it very slowly 
>>>> when she counts to three. So, I'm waiting and her thumb is on top of mine 
>>>> and she counts "one" then she starts to count "two" and the next thing I 
>>>> know is that I am waking up in the recovery room. 
>>>> 
>>>> When she came to see me I asked her if I was the one that knocked myself 
>>>> out and she just smiled. 
>>>> 
>>>> By the way this Propofol is white in color and looks like milk.
>>>> 
>>>> Humor is the spice of life.<360.gif>
>>>> 
>>>> 18's,
>>>> 
>>>> Marty 
>>>> 
>>>> On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope 
>>>> <[email protected]> wrote:
>>>> Hi Marty 
>>>> Yes a fl cracker--hope you are great today!!!
>>>> I am going to have an endoscopy thur. 
>>>> First one--they put you to sleep. 
>>>> Blessings
>>>> Jeanie
>>>> 
>>>> Sent from my iPhone
>>>> 
>>>> On Jan 19, 2015, at 7:55 PM, Marty Gartenberg <[email protected]> wrote:
>>>> 
>>>> Hi Jeanie,
>>>> 
>>>> You sound like a real southern gal. As for me, I'm just a good old plain 
>>>> city boy that also loves to go fishing. When I was a kid my father would 
>>>> take me out deep sea fishing and my favorite fish was blue fish. My mother 
>>>> used                      to cook it in milk to get rid of the fishy 
>>>> taste. It was really good but I can't seem to find blue fish here in 
>>>> Florida.
>>>> 
>>>> Anyway, I am kind of surprised to hear that your having a difficult time 
>>>> with Hydrea. That was the first drug that I got along with Allopurinal 
>>>> when I first had CML.
>>>> 
>>>> Both of those drugs never gave me any problems except if I took too much 
>>>> and it would take about a week for them to start working. Once they did 
>>>> then my blood counts would drop sometimes drastically so the doses had to 
>>>> be adjusted, but I never got sick or anything like that from them.
>>>> 
>>>> Good luck,
>>>> 
>>>> 18's,
>>>> 
>>>> Marty
>>>> 
>>>> On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope 
>>>> <[email protected]> wrote:
>>>> Hi all,
>>>> My family all love to fish, and we keep and eat                        
>>>> everything legalhehe.
>>>> I was reared on good fried to a golden brown perch                        
>>>> that live in the Fl lakes and rivers.
>>>> There is nothing better than good fried mullet with their roe fried to t 
>>>> golden brown.
>>>> We love it with grits and tomato gravy and cornbread.
>>>> I am feeling some better, but taking Hydrea is no fun at all.  Knocks you 
>>>> for a loop.
>>>> I haven't heard about the pontatinib yet.
>>>> My doctor says its a powerful drug and has to be kept monitored every week.
>>>> Well all the drugs are powerful as far as I am concerned.
>>>> Good luck everyone,
>>>> Jeanie<3
>>>>  
>>>>  
>>>> In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, 
>>>> [email protected] writes:
>>>> Hi again Greenie,
>>>> 
>>>> Like you said, don't look back but only forward. 
>>>> 
>>>> By the way, I am an animal lover whether it be dogs, cats, birds or fish.
>>>> 
>>>> I am glad to hear that you threw back those fish where they belong. 
>>>> 
>>>> 18's,
>>>> 
>>>> Marty
>>>> 
>>>> On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope 
>>>> <[email protected]> wrote:
>>>> Marty, My aunt left me some stock and money and one of the stocks was 
>>>> Novartis and my stock guy told me to sell it.  That was before Gleevec was 
>>>> in any kind of study.  Because of him I also lost $43,000.00 and I pulled 
>>>> my money out and fired him. If I, would have, could of.  Of course I wish 
>>>> I would have kept some of my early Corvette's that I had I would be worth 
>>>> a more money then                            Novartis.  But can't look 
>>>> back, just look forward.
>>>>  
>>>> Thanks for your reply, also I live in South Fort Myers not far from the 
>>>> beach.  In fact I went fishing yesterday by the beach and caught 8 fish.  
>>>> But I do not keep                            any, back into the water they 
>>>> go where they belong.
>>>>  
>>>> greenie
>>>>  
>>>>  
>>>>  
>>>> In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, 
>>>> [email protected] writes:
>>>> Hi Greenie,
>>>> 
>>>> First, where in Florida do you live? I am on the east coast, Boynton 
>>>> Beach. If we are not to far maybe we can do lunch one of these days. If my 
>>>> memory serves me right I think that you may be in Ft Meyers??? If so then 
>>>> I guess that lunch is out of the question...
>>>> 
>>>> About STI571. Do you know how it came about? As everyone already knows Dr. 
>>>> Brian Druker who was the one that had first discovered it. He tried 
>>>> finding a drug company that would produce it and finally found Novartis 
>>>> which was at the time an agricultural drug company. 
>>>> 
>>>> One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and 
>>>> it was working. Novartis didn't want to produce it in quantity because of 
>>>> the start up costs. Both Zavie and I got in touch with one of the 
>>>> principals of Novartis and told him that we may be able to bring a lot of 
>>>> investors into the company. 
>>>> 
>>>> At the time there was another CML site and we got on and asked if people 
>>>> would like to invest in                              the Novartis stock. 
>>>> At that time their stock price was $1,200 a share but there were also what 
>>>> is called American registry shares of Novartis that was                    
>>>>           selling for only $20.00 a share. 
>>>> 
>>>> Everyone started buying those shares and Novartis then started production 
>>>> but only after it was approved by the FDA which normally takes about 10 
>>>> years. With pressure being put on the FDA STI571 was approved in about one 
>>>> and a half years, and became Gleevec.
>>>> 
>>>> I bought many shares of Gleevec at $20.00 a share and have nor will I ever 
>>>> sell them because of my support for Novartis. As of my December stock      
>>>>                         portfolio Novartis is listed at 92.6600. Novartis 
>>>> stock has continuously gone up and up over the                             
>>>>  years.  
>>>> 
>>>> I am however disappointed in the price they are                            
>>>>   getting, most notably there are people with CML that can not afford it. 
>>>> Now Novartis does have some options for those that are having a difficult 
>>>> time but it still would be nice if Novartis would look back at what they 
>>>> were and what they are now, and maybe consider dropping their price for 
>>>> Gleevec. Wishful thinking? Maybe but maybe not, hopefully...
>>>> 
>>>> But Greenie, as you mentioned it is all about greed and money.
>>>> 
>>>> 18's,
>>>> 
>>>> Marty
>>>> 
>>>> On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope 
>>>> <[email protected]> wrote:
>>>> Thank you Marty,  Everything you wrote is so true about Gleevec and CML.  
>>>> It's unfortunate that greed and money has to be in the equations in the 
>>>> final outcome. After Interferon that almost killed me all that was left 
>>>> was Hydrea.  So when Doctor Tallman called me and wanted be in his study 
>>>> for STI571 I had no idea what was going on.  Within 3 months I was 85% 
>>>> clean and after 6 months I was clean.  Yes their have been over the years 
>>>> some up's and down's put that's part of life.  Like my late Aunt used to 
>>>> always say when she was in her 80's I just                                
>>>> take one day at a time. 
>>>>  
>>>> I wound like to see a cure in my life time because the old hour glass is 
>>>> starting to run low on sand.. And the way these people drive here in 
>>>> Florida the end could come anytime I leave the friendly confines and 
>>>> that's not any guarantee because most of the people speed and run the stop 
>>>> signs in this 55 and older                                community.
>>>>  
>>>> Keep in touch,
>>>>  
>>>> Greenie
>>>>  
>>>> In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, 
>>>> [email protected] writes:
>>>> 
>>>> Hi Greenie,
>>>> 
>>>> So you have been on Gleevec for 15 years. That is something good to know 
>>>> because what would you have done without Gleevec? This drug is responsible 
>>>> for saving countless lives. Thank GOD it is here or you wouldn't be here 
>>>> right now. 
>>>> 
>>>> If it weren't for dialysis neither would I be here right now. This is the 
>>>> advancement of what medicine has on our lives today. I always say that 
>>>> there will be a cure for CML and you can mark my words it WILL come soon. 
>>>> Just like all of the things that were not around years ago now they are 
>>>> coming.
>>>> 
>>>> GOD bless you Greenie!
>>>> 
>>>> 18's,
>>>> 
>>>> Marty 
>>>> 
>>>> On Thu, Jan 15, 2015 at 5:47 AM, Shannon L <[email protected]> wrote:
>>>> Hi Greenie 15 yrs on glivec,  i will be 14yrs this yr (started roughly 3 
>>>> yrs after dx)
>>>> Shannon
>>>> 
>>>> On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote:
>>>> Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting 
>>>> to retain fluid around my ankles a little but that could be and age thing. 
>>>> 75 years old.
>>>>  
>>>> greenie
>>>>  
>>>> In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, 
>>>> [email protected] writes:
>>>> Hi Richard and thanks for the update. My onc doesn't like for me to be 
>>>> informed either; he just ignores what I say and goes on to tell me what he 
>>>> thinks.
>>>> My uric acid was high along with my WBC and Platelets.  He seemed to be 
>>>> more concerned with the high uric acid--even called me on my cell 
>>>> personally twice; never had that happen before.
>>>> He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny 
>>>> the same thing they did 11 years ago when I was first dx.
>>>> He took another blood sample to see if I have a mutation against the 
>>>> Sprycel.  It seems strange that I had a mutation with Gleevec after 5 
>>>> years.  Is five years a cut off point? Has anyone else have this happen?  
>>>> Anyone else been on Hydrea after tki?
>>>> Going next week to Moffitt to see if I have the mutation.  Will let 
>>>> everyone know.
>>>> The leukemia has reared it's ugly head once again!!
>>>> Pray for me and everyone in need.
>>>> Blessings
>>>> Jeanie
>>>> (18)
>>>>  
>>>>  
>>>> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, 
>>>> [email protected] writes:
>>>> WOW! Just read todays posts.  I am praying for the group.  I will add my 
>>>> problem to the list.  Dec. 30 I contacted ONC about gaining 9.5 pounds 
>>>> water weight in 20 days after restarting Gleevec.  His nurse called that 
>>>> he was out of the country on vacation with his family.  She checked with 
>>>> the DR. covering for him and he asked me to stop Gleevec as he thought I 
>>>> was gaining weight  too fast also.  My ONC did return to the office on 
>>>> Monday but finally had a conference with his Associate and he agreed with 
>>>> that decision.  They both thought that I should be on a different 
>>>> treatment.  My ONC was to draft an e-mail to the VA ONC (the one 
>>>> controlling my prescriptions) about my reaction to Gleevec and to 
>>>> recommend the treatment he thinks I should be on. So I am still in a wait 
>>>> and see stage. My ONC tells me I am too informed about my condition and 
>>>> that challenges most blood cancer specialists that rarely see CML. 
>>>> So let the fun and games continue.  I am still feeling great, but the 
>>>> "Gleevec Brain" was also starting to show itself, but nine days off has 
>>>> cleared it. I'm as sharp as a busted tack, but that is "normal" for me.
>>>> 
>>>> As always, "life" and may your tomorrow be beautiful and better than today.
>>>> 
>>>> ...
>>> 
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