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Newly Diagnosed: Is getting to your blood readings in 3 weeks normal?


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#1 MarieC

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Posted 08 September 2013 - 11:14 AM

Hello, please give me some advice, I need some answers.  I was diagnosed with CML on Aug 12,2013 and have been taking Gleevec for 3 weeks since Aug 15, along with my blood pressure pill, multivitamin, baby aspirin, simvastatin, and Prilosec.  I take the Gleevec in the morning after breakfast, and space the other pills during the day, ending the day with Prilosec.  I have been going to the Oncologist for 3 weeks, and each week the WBC and Platelets are coming down, with the last visit on Sept 6 all my blood readings were normal, and he said I was in remission and will take another blood test in 2 weeks, he will read them, and then another 2 weeks a blood test, then I will have a visit with him.   I guess this 400mg Gleevec is working but I am so concerned that this is happening so fast and am worried about getting below the normal readings, and what are the symptoms if I do?  I was instructed to take Allopurinol for 3 days then take the Gleeve and Allpurinol for 30 days and then just gleevec.  I could not urinate with the allopurinol and had to stop it after a couple of days.  I am having trouble urinating, and a CT scan of the kidneys said everything looks OK, but may have medicinal renal disease,  The Onc. said probably blood pressure problems over the yrs.  I am to make an appt with the Kidney specialist.  The problem I am having from the beginning is I am so sick to my stomach with these side effects of this Gleevec, that I can't even function during the day.  I have all these Drs. appts. and don't know when I can manage to get to them and feel a little human.  I drink during the day as much water as I can tolerate, but my stomach is so bloated I am uncomfortable, I pass some water maybe 3 hrs later but not enough from what I am drinking,  Then during the night I wake up every 2 to 3 hrs and go like there is no problem, that sometimes in the morning I am so dry. I do drink some water during these night wake ups just so I don't get dehydrated.  I am not sure what is happening to me.  I also am retaining water in my ankles, but in the morning they are down then during the day start up again.  The Onc. said this Gleevec does make a person urinate less, is this  true?   All I know is I am so sick I just want to give up.  I want one day to feel good  and wish I could go back to before I got this unwanted sickness, where I could plan my day to do things, I just stay in the house now, and work around these miserable pills, and hope I can move my bowels and urinate.  I am sorry to complain so much, but I am an elderly senior citizen, and in a new area, with few friends and just family, and I don't want to dump all this on my sons, as they are trying to go to work, and I don't want to put these problems on their shoulders and worry them some more.

Could anyone give me a few hints I can try about this water business, now that the blood readings are normal, do I have to drink all this water?  Also, has anyone gotten their blood reading down this fast? What do some of you do for the sick stomach and nausea?   The prilosec does help some but I take that at night because the other pills take precedent.  The Onc. did suggest I take that at night also.  Any advice and tips would be appreciated, and thanks for listening.

Marie.



#2 CML2012

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Posted 08 September 2013 - 01:07 PM

You need a PCR for BCR/ABL test to know what % of cells are cancer cells. Your white blood count has responded but you do not know if chromosomes 9 and 22 are normal or not without the PCR test. I take the Prilosec and vitamins in the morning and Gleevec after dinner. I have not been sick on my stomach. I do not think the oncologist can say remission without a PCR test.

Also this is info I have found

A complete cytogenetic response means that no cells with the Philadelphia chromosome can be found in your blood or bone marrow.

A complete molecular response means the PCR test can't detect any of the bcr-abl gene in your blood. Most people with CML don't have a complete molecular response. They still have a tiny amount of the bcr-abl gene in their blood. This is called a major molecular response. Doctors still consider this to be an excellent response.

A complete hematologic response means your blood cell count has returned to normal, and tests don't show any immature white blood cells. Also, your spleen has returned to a normal size if it was enlarged.

Unlike with other cancers, a full response, or "remission" doesn't mean that you're cured and can stop treatment. Even if tests can't find any trace of CML in your cells, the disease can relapse.


Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#3 TeddyB

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Posted 08 September 2013 - 01:12 PM

I eat at least 2 slices of bread for breakfast when i take gleevec plus a good sized glass of water ( 2.4dl ), and have not have any major problems (some dhiarrea), but i too had some nausea in the first few months of starting treatment, then it went away. Your side effects should get better, so hang in there.



#4 MarieC

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Posted 08 September 2013 - 04:20 PM

Hey TeddyB, thanks for answering!  I have a small breakfast because, I do not have any appetite, but force myself to eat.  I usually have some cereal w/banana or soft boiled egg on toast, then the Gleevec and a glass of water around 8 ounces if I can drink it all. I have never been a person who could take medicines, they always seemed to effect my stomach.  When I was younger I would take a pill or 2 a day, but now that I am older, the pills have increased and the stomach  is still sensitive.  

I hope you are right that the side effects will get better, but how long does it take before you can see any difference, I want results yesterday

Thank you for your response, and will keep you all updated as I go along.  I am so glad I found this forum, and the help that has been given to others has  been very helpful and hopeful.

By  reading it. I don't feel so alone!

M



#5 MarieC

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Posted 08 September 2013 - 04:35 PM

Thanks CML 2012  I answered you but I think I forgot to click ADD REPLY, and don't know what happened to the reply?  Anyway I will learn, just bear with me.

I will print out all those test this way when I go to the Onc. I will know what to ask.  I know that this disease just does not go away that fast, and there will be relapses along the way, just was hoping that I could cut down on the dosage, and the Onc. said no. My spleen was never enlarged, no swollen glads no rash nothing.  I was going along fine until my primary said to take a blood test because I could not shake a cold I had in May.  That is when this blood work showed some problems. A couple of other blood test, still showed the same problems, that is when she suggested to get in touch with an Oncologist.

I live in the U.S. and my Presc. Plan does not carry the Sprycel or Tsinga, that some posters are using,  just Gleevec, maybe once Gleevec's patten expires there will be some generics that I can try that will not give me such a sick stomach.

Here's hoping.

I hope this stomach problem eases up once my system becomes adjusted to the medicine, I am one of those people who just cannot take pain.  Thanks for your response.

Marie



#6 CML2012

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Posted 08 September 2013 - 06:39 PM

Marie

I tried to private message you with some information about me but it will not let me.  I do have a story...I myself went in for a normal physical and my white blood count was 116000 so they put me in the hospital, straight to the cancer floor, five days before Christmas....scared me and my family worse than anything.  I do not know where you live or if you have an oncologist that is also a hematologist or specializes in leukemia, but my oncologist is also a hematologist.  He has not been the best about explaining what everything means and I have learned a lot by reading myself. But he has made it clear that it will take at least months for the Gleevec to make the Philadelphia chromosome undetectable.  (Also have you had a bone marrow biopsy to be sure you have the Philadelphia chromosome that causes Leukemia?)  My Oncologist did the bone marrow biopsy before he even started me on Gleevec to be sure of the diagnosis.  The Gleevec first gets your WBC in check then eliminates the current Philadelphia chromosomes you currently have then keeps you from producing them.  That is why you have to take it forever. Unlike you I did not even reach out until April or May after being diagnosed last December.  I was just too scared.  Now I know I will be on Gleevec forever and I am thankful for the drug.  I just had a PCR test and am praying it will be PCRU (undetected ... no more Philadelphia chromosomes). I have been taking Gleevec for exactly 8 months.  My Pharmacist is also great and they are the ones who told me to take Gleevec at night after dinner and there was a less chance of nausea.  Another good tip is no ibuprofen it blocks the Gleevec.  It is best to only take Aleve.  You may want to check with your pharmacist about the aspirin and make sure that is okay.  I have found it is a good rule to check everything you take with your pharmacist to be sure it does not block the Gleevec.  My pharmacist is actually at the hospital and they are great about doing all the research for you.  If you want to message me I will email you back, but I hope this helps.  By the way I am 43 and a mother of two.  Hang in there!!!


Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#7 GerryL

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Posted 08 September 2013 - 09:18 PM

Hi CML2012,

You have to be "friends" with someone before you can private message them.



#8 pamsouth

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Posted 08 September 2013 - 09:43 PM

Cml.

Even if you are

undetectable you still have Phil+, perhaps a million or more, who knows.  The TKI can only kill from the bottom level so far up the genaology chain, thus the TKI 's are not a cure.

  The bone marrow make the first stem cell at the top, and finds a pathway to go hide instead of dying off, she the defective stem cell, comes out every so often and has 10 to 20 more stem cells like herself, that makes all the blood lines, so at one point the PH+ is in everything.  That is what one oncologist told me, he also said she the original stem cell at the top, does not die off, if so not for a long, long time.  Sometimes I wonder if this defective stem cell at the top does die off, does the bone marrow continue to make bad stem cells??   I don't know exactly how it all works.   So the TKI is killing the PH+ off on the lower genalogy/level, but not at the top levels, so the stem cell at the top keeps reproducing bad cells, thus we always have to keep take TKI's as we kill them off more are being made.  I don't know how accrurate all these theories are, but that is my understanding.

Most ocologist/hematologist and others do not refer to it as a remission but as a response to the TKI's.

Trey has some good articles and charts as does Scuba or Lucky.

Regarding you kidneys.  I have been on Blood pressure pills and diruetics since 1997, the diurectic were given to me as a combination for blood pressure not fluid.   I went on Gleevec around Sept 1st 2005.  My labs fro the kidneys in 2006;  Creatinine and Bun was good, but potassium and sodium were usually off.  Probably because of the diurectic effect of dyhdration on the kidneys.  Then they started putting the GFR on my labs in 2006, that is your kidney filteration to get rid of waste and sometimes if the tubes or filter is not working you will have to much protein, blood, etc in your urin.  My GFR now runs between 56 and 60 which is Stage 3 for chronic kidney failure.  I went to a kidney specilist and he said if I did not swell at the the ankles/feet/lower leg I probably did not need the diurectic.  I have since lost 35 lbs and no longer take the blood pressure or the diurectics.  Hoping my next GFR will be higher, stage 2 is 60 to 89 ( I think) Oh, he did say if you have swelling of the ankle or fluids you need to take the diurectic you wouldn't want congestive heart failure or filling up with fluid in your lungs, etc.  Check your GFR most doc's don't like to put it on there as it scare people.  You can go a long time in Stage 3.  Usually if your kidney are failing you are low in vititimin D as your kidney make vitimin D.  Just google or search kidney failrure and vitimin D.  and you can read the article yourself.  I now get a script for vit D and take B12 shots.  My new primary doc is going to run some labs to see what else I am deficient in.  Your kidney do a lot of things, one of the most important organs you have, be sure and see a kidney speclist and look the kidneys up on the internet.  Remember everything is filter thru your liver and kidneys, they do a lot of work, so try not to overload them with to many chemicals, etc.  You can eat right a good diet but sometimes if the kidneys and organs aren't working right, plus the med's you take, it get tricky for the body to absorb the right vitimins and mineral and send them to where they are suppose to go.  I went on the Jenny Craig progam to lose the weight, probably was 60 % of daily food Carbs and I was boderline on my glucose, so I cut back on their food and took fish oil and my Triglycerites and glucose dropped back to normal.  Tryiglycerites went down from 223 to 130, just cutting back carbs and taking fish oil.  So you got to have a doc run some good labs on everything and figure how what your body needs and how it works.  Everyone is different.  I have had to pursue different docotors to get the info I needed, has not been an easy task.  Sometimes you have to fight for your life.  But just take it a day at a time and try not to get overwhelmed you will get there.  Med's are harder on you the older you get.  If you notice on most lables, it will say if you are over 65 years or have other chronic health such as kidney etc, check with your doctor before taking.  We took care of mom for 3 years before she passed away, they had her on way to much med's elderly people should be taking lower dose and becareful of the combinations.

PamSouth


PamSouth


#9 MarieC

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Posted 09 September 2013 - 06:08 AM

Hi CML, You gave me so much info, I thank you for that.  I don't know how this forum works, I am learning, I don't know how you make friends as Gerry L says to e-mail a person personally.

To your questions, yes, I had a bone marrow biopsy done, I do have the Phila. Chromosome, that causes this disease. I do have an Onc. that is a hemotologist and cancer/Leukemia specialist at the Cancer Center here.  The only problem for me is I live in a small town, and the C.Center is 25 miles away, and taking that trip every few days and by myself and not feeling good with this stomach, is taking a toll on me. 

My Onc. says take Gleevec in morning, I did in the beginning take it at supper, but thought, I had all this water to drink for this pill, how can you do that at night, and still get some sleep?  That then changed me  to morning time.  The aspirin a day was given to me by my primary Dr. because my platelets were so high, she was worried about a stroke.  She suggested 325 aspirin once a day.  I used to take for years a baby aspirin, now that my platelets are down, I am going back to the baby aspirin, the aspirin (325) even tho it is coated gave me problems. 

This pill makes my stomach so bloated, and gassey that everything I put in my stomach seems like it never leaves the stomach.  Around 4 pm then the stomach seems to settle down.  I know the kidneys have to be checked, and I will get an appt. when they decide they want to see me.  This waiting is taking a toll on me too. 

Can't a person just  talk by answering a persons  comment?  I will try to find out how to be friends to e-mail another member of this forum personally.

I am 78 yrs old and have 2 sons and their wives that live in the area about 15 min. away.  Moved here from New Jersey 3 yrs ago, where within my front door in N.J. had medical centers, Drs . Specialist whatever you need in a 3 mile radius of my home.  Here, you travel to what you want and always miles away.  Rural life is fine but the emergencies at an older age is wanting.  No offense to those who like the rural life. I needed to be close to my boys.

My Pharmacist is the local Rite Aid Pharmacy and he does not get a call for this Gleevec only another young lady who is 31 yrs old, so he does not have to much of other people to go buy.  He does keep in touch with how I am doing, so everything is new to him too about this pill.

Please can you answer a Q? What do you or anyone else take when you have constipation?  Please advise.

Thank you

Marie



#10 MarieC

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Posted 09 September 2013 - 06:11 AM

Thanks Gerry L, but how do you go about being "friends" with someone before you can private message them?. Am new here.

thank you

Marie



#11 LivingWellWithCML

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Posted 09 September 2013 - 07:29 AM

Hi Marie,

You've come to the right place with your questions!  CML patients on this board often have more to offer than some of the oncologists who treat us - although we aren't authorized to write prescriptions.   I have been on Gleevec 400mg for 2-1/2 years and although I've tolerated it well, my stomach and GI tract still seem to be suffering a bit, because I lost a lot of weight over the first few months of treatment and haven't been able to gain it back yet.  I suspect that my GI is out of balance because of Gleevec, so I've started implementing a few changes in my routine to see if it will help.

Here is what some folks do to help with the stomach and GI - feel free to run these recommendations by your onc as well:

  • Gleevec 400mg can be scored into 200mg half-pills and take the first dose in the morning, and the 2nd dose a bit later in the day.  Sometimes when the dosage is spread out like that, it can be a bit easier on the stomach - and it can also help lessen some of the side effects.  I always take Gleevec with food, otherwise I would get nausea.
  • Your breakfast routine is almost identical to what I've done for the past 2+ years, although I usually start the early morning with some coffee first.   I have been taking my Gleevec 400mg with breakfast pretty much every single day - either banana + cereal, or oatmeal + banana, and of course a glass of water.  I still can't figure out why us CML folks crave bananas so much?!?  Anyway, that breakfast routine has served me well ... no nausea when I have enough food.
  • Dissolving the pill in water could be an option too, although it's more of an extreme measure I think.  It's safe to do and does not appear to cause any issues with absorption of the drug.  I actually tried this yesterday for the first time, and although it takes a full 30 minutes to dissolve completely, I gulped it down with a meal and my stomach is already feeling a little bit better today as a result.  Although I'm in my 3rd year of treatment, I'm at a point where I feel comfortable changing my routine a bit to see if it settles down my stomach and GI tract, so for you, this approach might be something to try as a last measure.  Regardless, it's well known that Gleevec can be pretty hard on the stomach and GI tract!

Regarding blood cell counts:

  • In general, once your White Blood Cell count has dropped close to the normal range, you should be able to cease the Allopurinol (unless you need it for an unrelated condition re: kidneys).  When first starting treatment for CML, the kidneys can get overwhelmed with the billions of CML cells that are being killed by Gleevec initially, so Allopurinol helps flush everything out.  I took it for about 2-1/2 weeks when I started treatment while my White Blood Cell count dropped, and I haven't needed it since.
  • Blood Cell counts are important numbers to monitor, but once they are stable, it's the deeper level of testing that will show how well you are responding to Gleevec.  The first scheduled test is called a FISH and should be run after you've been on Gleevec for 3 months.  It's a test that reports a percentage of detected CML cells, so the goal is for that test result to reach 0% over the first year or so (although faster is definitely desired!).  For now, you just need to plug away and get that 400mg dose into your system daily, and let your onc monitor your blood counts to make sure they stay stable and don't drop too low.

I personally found the first 3 months to be quite a rollercoaster with weird side effects, wacky blood counts, and my weight loss, but things did eventually settle down.  Keep us posted!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#12 MarieC

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Posted 09 September 2013 - 08:21 AM

Hi Dan, thanks for all the info, a lot to absorb,but God Willing, I will have that time.  I could not tolerate allopurinol, it just completely stopped me from urinating, and the bloating was unreal.  The Onc. stopped me after taking it for 3 days, then my main Onc. said go back on, which I did for another 4 or 5 days.  Finally after all the worry and complaints, my onc said you can stop it, you were on it over a week so that should be ok.  I did stop, and the burning I had also stopped, so that told me that most of the cancer cells were out of the body.  I still get a burning sometimes, but the uric acid levels are within  the  normal readings, so far. 

I am not a coffee drinker, I am a green tea drinker for the past 45 yrs, don't miss it, I guess I am odd, but never liked the taste of coffee.  My husband on the other hand could not sleep unless he had coffee, go figure. Wish he were still here to joke about my green tea. I do not have an appetite, I force myself to eat so I have something in my stomach to cushion this Gleevec,  I have been eating just bland food, and miss my spaghetti and all that good stuff, but don't want to push the lining of the stomach any more. Will look forward to eating normal again.

I have read where some people cut their pill in half, I hate taking pills the first time, let alone cut it in half and have to take them twice, does not appeal to me, but whatever works for you and others is what is important. 

I could tolerate all this fluid retention in the ankles and around the eye, if my stomach would just give me a break and feel not so sick, I could handle this better.  It is only 3 weeks on these pills, but if someone could say the side effects cease at week 7 or 8 that would give me something to reach for, but I guess that is asking for to much.  In time, hopefully, I can come here and say all the griping I did about this pill are over and I am doing fine, am sure that will come to be, but patience was never one of my virtues.  I am grateful that the blood readings  have come down to normal, but I know this is just the beginning of a lot more test. Hopefully I can report periodically good outcomes.

thank you Dan, for your input, appreciate how all of you have responded to this newbie complainer.  Blessings to each of you.

Marie



#13 mariebow

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Posted 09 September 2013 - 02:27 PM

Eating prunes has always helped me, and drinking a lot of water helps.  If you like prune juice maybe try that also.  I do not want to drink it but I like prunes.  I am 59 years old dx a year and a half ago.



#14 GerryL

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Posted 09 September 2013 - 06:53 PM

Hi MarieC,

You click on their name and when their details come up there is a box in the top right hand corner  +add as a friend  .

They then need to accept you, after that you can then private email them.



#15 MarieC

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Posted 10 September 2013 - 04:45 AM

Thanks Pamsouth, you gave me much to think about and very informative information.  i will see a kidney specialist in the beginning of Oct. hope I can hold out till then.

Yes, as I age so do my pills, and this is what is giving me a hard time with taking Gleevec and other pills during the day.

I have so much to learn, just hope I have the time to absorb all this.

Thanks again

MarieC



#16 LivingWellWithCML

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Posted 10 September 2013 - 09:13 AM

You bet!  Note that Gleevec isn't the only weapon in the CML arsenal, so if the side effects are too challenging to manage, then you and your onc will want to try one of the newer therapies.  There are plenty of patients who have too much trouble with Gleevec, then make a change to either Tasigna, Sprycel, or one of the others and find that they have less side effects overall and do very well.  Each of us responds differently to each of these therapies -- it's all about finding the right one for you!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#17 MarieC

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Posted 10 September 2013 - 10:57 AM

Dan, this is the problem, my prescription drug plan, does not cover tasinga or Sprycel, just Gleevec, I have no choice but to stay on this, until maybe next yr when the Gleevec patten is supposed to expire.  In your part of the country and others in other countries, have the options.  I wish I had them too.

Thanks



#18 MarieC

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Posted 10 September 2013 - 11:01 AM

Hi Marie Bow, prunes are good, and tried them over the years, but as with everything I put in my stomach, had a difficult time with them too.  I am getting to be a lost cause, and am getting very depressed with all the stomach issues, and no option to try other pills, I wonder if all this is worth it.

I sometimes use sennokot, but not often. 

Thanks again.



#19 mariebow

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Posted 10 September 2013 - 12:19 PM

Yes MarieC this is all worth it.  Call your dr office and ask for something that they think will help you. If that doesn/t do it call again and I am sure someone on here should have a remedy, hope you get to feeling better soon.



#20 chriskuo

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Posted 10 September 2013 - 12:33 PM

A  lot of new insurance plans are becoming available for next year so you can check out your options over the next few months.

Also, you may be able to have your doctor request coverage because of medical necessity.

Drug companies provide copay support in many cases.






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