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#1 jstevens11

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Posted 16 June 2012 - 07:01 AM

Had my first blood transfusion yesterday. Two units, and five hours. I'd like to here from others who had a transfusion. What should I expect from it?. When will I feel a difference. My whole body is sore, and I'm nauseous.  Is that normal?



#2 chriskuo

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Posted 16 June 2012 - 10:43 AM

What type of transfusion?  What condition was it for?



#3 Tedsey

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Posted 16 June 2012 - 03:43 PM

You may not feel a difference unless it brought your Hgb level back up to normal.  From what I remember, a whole blood transfusion only raises your Hgb by 1 or maybe 2.  For the anemia brought on by my CML, I needed the transfusions to get me out of the  "danger zone" (for me, it was when I was below 6).  So, one or two numbers higher did not make a difference in the way I felt, but kept me from a coma.  I also was given bi-weekly shot of Aranesp to increase Hgb along with the transfusions.  Neither brought me up to normal levels, but it was enough to stay among the living.   

Like you, I always felt worse after.  But, by body has issues with blood products (I get anaphylactic shock, but if you didn't your first transfusion, you are probably in the clear).  I did not have a sore body or nausea, but my arms hurt during and for days after (the big needles are not kind).   I didn't feel a difference either.   It just took a drug change and time for my body to to get "back to normal".  I am still a little under avg., but I feel fine and no longer need transfusions or shots (fingers-crossed). 

Good luck.  I hope your condition improves quickly.  I dealt with it for about a year.

Tedsey  



#4 Judy2

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Posted 16 June 2012 - 04:09 PM

Hi John,

I had a blood transfusion, 2 units also, when my hematocrit was down to 18, never knew what my hemoglobin was at that time. It brought my hematocrit up to 26 but I did not feel any difference. I was given Tylenol during the transfusion as I was beginning to get a temp but other than that I had no reaction. I only started to feel better once my condition got under control, once all my meds started to kick in. John, are you having severe immunosuppression from your TKI? Why did you need the transfusion? Hope you feel better soon.

Judy



#5 pamsouth

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Posted 16 June 2012 - 04:54 PM

Judy2,  I was just wondering what caused your hematocrit to get down to 28?  Is that the only thing that was low?

I should get my lab reports in the mail next week.  I have an onc office visit July 2. 

Me and doc's, new nurse, did not hit it off very well.  Did you ever hear of an onc nurse say she doesn't know how to read your Fish Lab or what it means? I said well it is in the middle of the paragraph and it starts off like this "two hundred nucli examined and percent demonstrate evidence of two fusions."  Got a big lecture from her,  why I should wait on my doctor.  The first she read them to me, I hung up the phone and was a bit upset until I realized there was no way they could have been right, so I called her back and got the lecture.  Duh, she has no insight.  I don't where they get some of these nurses from, I think a few of them are lazy!  I have been getting these reports for almost seven years, doesn't take an Einstein to read a sentence.  Not like I am newly diagnosed.  I would like to get two more labs from there as they do their own, but don't think I will be going there until the new year when I turn medicare age, 65.  The onc doc only gave me one refil for July, so I will need to start looking again.  I so... hate to send my labs off, but I don't care for this care at all!!!

Well I won't take up any more of John's thread. 

I hate it when they let your counts get so low you have to start having shots and transfusions.  Seem like you trade one problem for another.  I do know red cells carry oxygen to all your organs and brain, skin, liver, kidneys. etc.  It is important in my humble opinion not to get  counts to low, unless one wants to play russian rue-let with the rest of the body's factory .  Well I take that back if you are have a transplant they need to wipe out everything for your donor cell, but for CML I don't know why they have to let your counts get so.. low.  I would rather have a higher PCR count then having transfusions and stuff. Transfusions carry there own risk don't they?

PamSouth


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#6 Judy2

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Posted 16 June 2012 - 06:35 PM

Hi Pam,

My hematocrit got down to 18, not 28. that was when I ended up in the hospital with renal failure and they discovered the Wegener's. At that point I wasn't even dx with CML, the CML dx came 3 months later. I must admit I was a little light headed walking around with a hematocrit of 18 but was under a great deal of stress and so I was ignoring most of my symptoms.

Pam, I'm confused. Are you going to your appointment on July 2nd? Did the nurse give you your fish results or not? Sorry for being so slow tonight, I think I'm having a little brain fog...or at least that's my excuse and I'm sticking to it.

Anyway, John, sorry we got off track but you are not alone with transfusions and hopefully your body will kick in and you'll be feeling better soon.

Judy



#7 Tedsey

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Posted 16 June 2012 - 07:12 PM

Pam, sorry to hear you didn't hit it off with the nurse.  Anyway, I think the reason why they "let" patients get low is because, unless you are newly diagnosed, and your onc is checking your blood often, it may not be until the patient complains that the anemia is discovered.  Blood transfusions are a risky (thus, another game of "roulette").  There are some pathogens that cannot be controlled for.  A person with a weak or suppressed immune system, (or anyone getting blood), could pick up a virus from donor blood.  That would bad news.  There is risk involved.  And the shots have a whole set of other risks.  Sometimes the body will rev itself up or just hang low for a time and then go up.  Unless the anemia is interfering with the quality of life or the body is not getting enough oxygen, I think it would be best to be conservative with blood transfusions and shots.

All the best.  Good luck!

Teds 



#8 pamsouth

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Posted 16 June 2012 - 08:11 PM

Judy 2, 

Hate to steal John's thread here, I will post next week when I get the results in the mail.

Short update Judy.  The nurse and I played phone tag, ridiculous.  Whatever phone she was using came across my cell as roaming.  So I called her left VM don't call me from that phone, your roaming.  My husband and I were out running errands.  So the onc nurse calls me from another phone, but my phone doesn't ring, but I see it on the caller ID.  So I get home and call the nurse from home phone.  Praise the Lord she picks up, you know how it is waiting on your lab result, especially when you have a new onc and a new lab and there is some pressure to change TKI.  Funny Thursday she didn't have my labs and had someone else call me, not her.  Then next day Fri. I called scheduling and I backed my doc appointment a week, 1/2 hour later, onc nurse call and guess what, she does have my labs, who know what got lost in communication, except she hasn't been answering my phone calls from before.  Anyhow she doesn't really want to give me info over phone, lecture, she will mail them next week.  I press her and suck up to her to get the results.  However after hanging up the phone, I thought no way those number could be right, was I I been looking at number for over 6 years, and this did not jive?  Anyhow it Friday and they go home at 4pm in 1 /2 hour.  I call her back, and she does return my call, with a lecture, she doesn't want to give me info over phone, talk to your doctor.  I press her again and butter her up.  She says well I don't understand this lab report,  all I am doing is reading word for word, but she made an effort.  Anyhow I am not taking anything she said for gospel until I get the reports in the mail.  I thanked her, agreed with her, told her I knew how busy she was, and appreciated all her efforts.  Oh dear, I have to cheer up the onc nurse to get info.  Not liking this one bit.  Lots of politics.  She just started work for the onc about a month ago, so I should give her a break, I guess. 

As far as the lab numbers, the PCR about the same, as March.  The fish if she knows how to read up a little.  Today I pulled out my labs about 5 years back and I am still in same range I have been in, for over 6 years.  Strange even my old lab, Gen Corp, in New Jersey would run more then 1 PCR, because I would be PCRU (until they went to the IS, then it went way up then repeat test then big drop) but the fish at Gen Corp would be any where between negative to 8 %, for over 6 years, I call that stable. They figured there was maybe a problem in the  stuff they were using to run the PCR who knows how they come up with the results.  Anyhow the new onc had looked at my old labs and said the same thing, I don't get it PCRU and positive FISH.  So he ran test to see if I had other mutations or whatever, and I only had the BCR/ABL.  So he wanted to do a BMB but I wouldn't let him, I told him at consult I had two BMB and they were painful, took me weeks on ice, and pain pills to recover.  I have sever muscular bone problems.  I am always going to PT and massages and using ice.

John sorry, here I said I wasn't going to steal your thread and I rambled on.  Please keep us posted on how you are doing, I try to follow these post as much as time will allot me.

I may not be following much this week, doing a lot of cleaning my husband company coming from Michigan next week end for a few days.  I am slow.

Judy I forgot about your Wegener's, so that is what caused your counts to be low?  Kind of strange you were dx with CML to, do you think there is a connection between, transfusion, low count, Wegeners and CML?

So John & Judy how low does your doctor let your counts get, that he thinks you are in danger of needing a transfusion?

PamSouth


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#9 Judy2

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Posted 16 June 2012 - 08:30 PM

Hi Pam,

Sorry you had so much trouble with your nurse and strange about your PCRU and elevated fish. I wonder if that has ever happened to anyone else on the board?

Teds is right, at the time my hematocrit was 18 I hadn't been dx with anything, it was found at my 4 month appointment with my rheumatologist. In the last 15 months my hematocrit has never gone below 27 so I never have needed another transfusion. As far as the Wegener's and CML being connected no one really knows for sure as there are very few people who have both.

Pam, I hope you have a good time with your company and are able to get your mind off CML for at least a little while.

Judy



#10 StainedGlass

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Posted 16 June 2012 - 08:31 PM

Hi John, I've been getting transfusions since Dec 2011 for CMML 2. My leukemia is rare but not unheard of. I've had no problems what-so-ever with getting my blood. I'm given Tylenol, Benedril and Lasix every time. Sometimes I get blood every week and sometimes it takes 2-3 weeks for my hemoglobin to get low again. If you have the option of getting typed and cross matched the day before your transfusion you can knock 2 hours of your transfusion time. I never feel any difference after I've had blood, but then again I never know when I'm low either. I hope this helps. Smiles, Judi



#11 pamsouth

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Posted 16 June 2012 - 08:33 PM

Tedsey,

Right when you are new or switch to a new TKI they keep a close eye for awhile. 

I was just thinking then perhaps we should continue to get CBC monthly or bi-monthly.  If they are not checking, you could very well slip into anemia.  I was getting a CBC every month for about 4 or 5 years then it was bi-monthly.  At the new onc, I had the FISH, PCR, CBC AND CMP in March.  However when I went for my labs Jun 7th I noticed the lab tech only put two vial down, red and green I think.  So I asked her what the script called for and she said only the FISH AND PCR.  So I asked her if she could get the doctor to add a cbc and a cmp or what ever it is for liver and kidneys.  So she got the order from the onc nurse.  I don't know if the doc just forgot or he didn't think it was necessary as I had one in March, but isn't that a long time, 3 months, in between CBC's?

I would hate to slip into anemia and need a transfusion?  Perhaps I would have signs of anemia.  But you know stress can make you tired too.  I think would rather be safe then sorry and get my CBC at least quarterly. 

PamSouth


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#12 pamsouth

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Posted 16 June 2012 - 08:55 PM

Loves,

Was just wondering what medicine you take for CMML?  Would it be the same TKI'S as for CML?

You get blood every week?  Is it your the drugs you take that is the reason or the the CMML?

I briefly looked up CMML, but didn't quite understand it??

PamSouth


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#13 Guest_billronm_*

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Posted 17 June 2012 - 02:17 AM

Hi John,

I was dx 5 years ago, and was put on Gleevac. We all know what a terrible state of mind our dx puts us in. The G made me sick at first, 3 weeks after dx I got pneumonia, and I was in the hospital for 5 days.My onc ordered 2 units of blood. So I had the transfusions with no problem. I had no idea what was happening to me, I never even asked any questions, because at that time I wouldn't have understood anything anyway. But here I am 5 years later, and I'm doing fine. I'm on Sprycel now. My biggest problem is anemia and low iron. I wonder if a transfusion would help me. I think I would rather do that than take these x#&% iron pills. I had iron infusions last Sept., and I had an allergic reaction to the medicine, so I guess iron pills are my only option right now. I'm hoping I don't have to take them for too long, they nauseate me.

                                      Good Luck to you!             Billie



#14 pamsouth

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Posted 17 June 2012 - 03:08 PM

Tedsey,  Do you know how low  your counts have to get before you are in danger of a blood transfusion?

PamSouth


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#15 Tedsey

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Posted 17 June 2012 - 03:23 PM

Everyone is different.  And anemia usually doesn't come on suddenly unless you have lost a lot of blood, but that isn't exactly anemia.  Anyway, I was told that around Hgb 8.7 is when most patients feel it.  As for when to transfuse, that is the doctor's call.  Each one has their own comfort zone.

Teds



#16 Melanie

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Posted 17 June 2012 - 08:07 PM

Hi John,

I too had my first blood transfusion on Friday. Got two units along with tylenol and benadry and it took about 6 hours to complete. I got typed and crossed match the day before, so it wasn't too bad. I have no pains or nausea. I actually feel better. I was so out of breath and worn out prior that now I can actually feel my body getting some oxegen...and even my skin isn't as pale. My HGB was 8.4, so not terribly low, but I was very symptomatic I hope you get to feeling better soon. I'll get my blood drawn tomorrow so we'll see what the transfusion did for my hgb. I should mention that I also manage my wbc and anc with Neupogen shots. My onc just lowered my Tasigna dosage in hopes that we can balance out all my numbers without shots and transfusions. Praying the transfusion works well for you and you feel better quickly!

Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#17 pamsouth

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Posted 17 June 2012 - 08:27 PM

mbrown,

Was just wondering with the risk transfusion and shots carry, wouldn't it be better to lower your Tasigna dose to where your body doesn't need transfusion and shots?  What does of Tasigna were/are you on, when did you start on Tasigna and what dose will your be going to?

Just curious.  PamSouth


PamSouth


#18 Melanie

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Posted 17 June 2012 - 10:45 PM

Hi PamSouth,

Yes, I would love to eliminate shots and transfusions and be able to maintain my counts on a lower dosage of T. We have been trying since dx last May 2011. I've been on all 3 TKI's trying to find a balance. Usually my numbers tank anytime I get near a full dosage, so my onc is finally willing to try a lower dosage until my numbers balance. The plan now is to at least have some drug rather than none while my numbers recover. I've been on T and shots since beginning of March. Started at 150mg, went up to 300 after 2 weeks, numbers stayed low normal...moved up to 450mg by first week in April...took one week for my anc to drop to .6; following week to .2. Plt started to tank too.The shots averaged every other day till I dropped to .2, then daily.  Anc recovered, stayed on 450 mg, shots 4 days on, 1 day off, then 3 days on 2 days off, etc. Then beginning of May, my RBC, and hgb started tanking. Plt were still declining. Wbc & anc were being managed with the shots. By first week of June we dropped the T down to 300mg, shots down to 3 a week - reds still declined; whites maintained. This last week we dropped T down to 150 mg, stopped the shots and had a transfusion. Anxious to see what my cbc is tomorrow. Good news is that this is the longest I've ever been able to stay on a TKI so I'm praying my PCR test comes back good. Get it tomorrow too. Sorry to ramble on...Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#19 pamsouth

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Posted 17 June 2012 - 11:09 PM

Melanie,

I will be praying for you too, that your PCR test come back good, that yo will stabilize your CBC counts and liver and kidney will stay Ok.  Praying you won't have to have to have those shots and transfusions, too, as  I understand they are a bit risky.  Seems like when one thing goes wrong we take more pills, shots, etc  they cause other problems, vicious cycle.  MY PCR and FISH are not great but they have been stable for almost 7 years and my CBC is close to normal and my GFR KIDNEY sometimes dips down to 58% but then it will go back up.  I don't know, seem like most onc specialist, want you to have low bcr/able PCR counts regardless of the CBC counts.  It is a hard balancing act.  But I think some of the leading oncologist are beginning to soften their view on these issues; as to the long term side effects, and to low cbc counts, kidneys & liver, and quality of life issues, that some onc are lowering the dose.  I think the body changes from day to day, so counts fluctuate up and down a bit. I think when I have had a cold or an infection my FISH seems to jump up a little, so there are a lot of factors. I have been on Gleevec since 2005 I do not have any mutations and I have not lost my response, but I am still fish positive, for seven years my FISH have run between, undected up to 8 % ,  but usually it is somewhere in the middle.  The FISH in March was 1.5 % and I think the one last week is 6 %, I haven't gotten it in the mail yet.  But it will drop back down again, like it always does.  I had a bleed the week of my labs, from some herbs I was taking.  I think that might have made my FISH counts go up.  The body has a lot of things to take care of, so labs differs from time to time.  Like I said it sort of goes in a little wave for almost  7 years now.  I went to a seminar earlier this year, with several leading blood cancer onc and the one that spoke on Leukemia said as long as your lab run in a wave and not go straight up, but are in a stable range, don't worry about it, as you can take a dozen drops of blood and come up with a dozen different results.  Even if your PCR were  you could still have a million + BCR/ABL PH+.  The TKI only kill at the bottom level they don't kill the HSC the ancient stem cell that has a transcript error of some king, this stem cell reside somewhere at the top of the genealogy chart.  The TKI don't get up that far and even if they did, would the bone marrow still produce and protect these defective stem cells, I don't know if anyone knows the answer to that.  You might looked up some charts.  I had one somewhere, it is interesting to see how from the first stem cell the flow of how the different blood cells are made.  Anyhow I think it would be fair to say the tki only kill close to the bottom of the chart.

Here is a chart that might help you.  You might google some other good charts.

http://en.wikipedia..../Haematopoiesis

This link doesn't start up at the top of genalogy the HSC ANCIENT HEMATOPO STEM CELL, it starts lower at the Myeloid stem cell and the Lymphoid stem cell.

http://www.scribd.co...atopoiesis-Tree

Good Luck

PamSouth


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#20 StainedGlass

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Posted 18 June 2012 - 11:25 AM

Hi Pamsouth,

I'm taking hydroxyurea twice a day. My onc recently lower the dosage in hope that my RBC will increase and I will require fewer transfusions. The hydroxyurea brought my WBC down rapidly after my spleen was removed, however, with the lower dose my WBC is rising and all other blood counts are staying low. I have no pain most of the time, I still have my hair and my energy level is good. We all know that leukemia isn't staged like other cancers so to help me understand my onc said that on a scale of 1-5, I'm 4.5. With my CMML 2 being so advanced my body doesn't react to much. Sometimes when I get blood the RBC/platelets go down. I don't fully understand but apparently this is not how it is suppose to work. I've lost 80 lbs. I have my appetite but can't seem to gain weight. Then again, I don't look sick and I feel fine.  Thanks for your interest. Have a great day. Judi






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