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update after the transfusion

Cucu me
Posts: 214
Joined: Apr 2015

On Friday instead of chemo 5 I got transfusion...... Most of my levels were half of the minimum.

Chemo is postponed for next week.

I was so upset and I cried.

What is your experience?

Can you comfort me a bit, I need it...

Thanks

AWK
Posts: 364
Joined: Mar 2013

I have had a platelet transfusion and two blood transfusions.  The first time I was upset, then I was told it happens from time to time and we need our counts to be good to help with responding to the chemo and our health.  After much back and forth my counts are all now at the low end of normal and the team is happy about that.  I feel so much better too.  I didn't realize how badly I was feeling nor how completely fatigued.  Hang tough, it will get better.  

Hugs - Anne

Cucu me
Posts: 214
Joined: Apr 2015

I was weak,but I'm still the same.

The headache stopped though, I thought that's was my regular one from years...

Probably was from the low blood counts.

Do you think I'll be better on Thursday, so I can have the chemo or not?

The doctor did not explain enough and I did not ask.

 

AWK
Posts: 364
Joined: Mar 2013

They are probably waiting to see if you can start producing the counts on your own.  Here are a couple of things that will help and continue to help me:  eat apples, grapes, red meat (if you can), peanuts/peanut butter.  My doctor also had me start taking an iron supplement and b12; you should check with yours to see if that is okay.  Kale, dark leafy salads.  

My platelet count had dropped to 17,000; red blood cells to 7.1to give you an idea of where I was.  Diet for sure will help and kicks in quickly.  

Are you bruising easily?  Other things to look for include cold sores in the mouth, bleeding gums that don't stop in a couple of minutes, bleeding that doesn't stop period, getting winded going up stairs.  These are all symptoms of really low counts when put together.  No aspirin and watch any NSAIDs.

Hang tough.  Hugs -Anne 

Cucu me
Posts: 214
Joined: Apr 2015

My diet is vegetarian. I only eat fresh organic chicken, like once per week. I don't eat eggs, dairy, sweets, etc. A guy, who is treating with chinese medicine, is guiding me.

My counts were at the minimum in the begining of my chemo. I noticed they were droping, but I didn't tell anything, the doctor neither.

On Friday we were "surprised". I think it was expected, but no one paid attention to it.

The doctor did not order any meds or diet. I got transfusion, two bags.

The chinese therapist told me to eat sesame daily, dark bean every other day and drink carrot + beat juice daily.The rest fruit and vegetables mostly.

A lot of water too.

I don't have the symptoms you mentioned, but I'm constantly tired now, can not walk as before, I'm sleepy.

Only the headache stopped after the transfusion, which is great.

 

These were the counts:

Hematocrit 18    (34-46)

Hemoglobin 6    (11.5-16)

Platelets 80       (160-400)

Red Blood Cell 2   (4-5,2)

White Blood Cell 2  (4-11)

 P.S.

I just read your post with the trial's results. I'm happy for you, keep it that way!!!

AWK
Posts: 364
Joined: Mar 2013

And I was exhausted too.  I had a hard time remembering things and my balance was off.  I slept so much and woke up feeling just exhausted, never rested.  After my transfusions it took a few days for my energy to rebuild.  Also try baked potatoes are good and bananas.  You have to watch your potassium levels too according to my doctors.  

Be gentle with yourself.  Sometimes we just need a break for our bodies to recover.  And thanks on the trial encouragement; it is a long road ahead but so great to finally get some good news after two plus years of not so good news.  I am lucky!

hugs -Anne

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

Hello,

i also had a week or 2 where I had to delay treatment too it upset me too, but I know it's important for your body to be able to handle all of the chemo. Waiting a few weeks is normal so your body can spring back from all of it. I understand how you feel and want to stay on track to fight it. Your still fighting they are just making sure you keep up your strength to do so! Tami

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

My numbers tanked as well during treatment.  That was six years ago now.  My treatment consisted of simultaneous radiation and chemo, then surgery, then follow-up chemo.  I had several transfusions at different points during treatment.  My final chemo session was delayed due to low numbers...but eventually I got through it.  Just wanted you to know that it is do-able.

Sending my very best to you,

Susan

Cucu me
Posts: 214
Joined: Apr 2015

Thank you ladies, I feel better after your posts.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2752
Joined: Mar 2013

Yep, like some of the other ladies, my #6 was delayed.  We left there crying and devastated because I SO wanted to be done.   It sucks, but you need to be strong enough to get it.  

I am sorry, but you will get there!!!

Cucu me
Posts: 214
Joined: Apr 2015

I like your optimism. Great spirit!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Now, having said that , I understand why it is upsetting for you. My numbers tanked, too, and I was worried. I do think that in the grand theme of things, a slight delay will not cause your treatment to be less effective. I wish your numbers were higher- and they will be with some rest from treatment. I can't speak for you or any of the other fantastic women on this board, but I know for myself that this cancer journey was not on my wish list or even remotely expected. I hate that I was diagnosed with this disease. It has brought me to my knees. I was physically fit and got cancer anyway. There is no rhyme or reason to it. Please know that we are here for you- you are heard and you are not alone.

Warm Wishes,

Cathy

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Cuculigata, I may be feeling your pain.  I just had my first bloodwork done today post first chemo. While all the components in the CBC are near the low end of normal, when I looked at the white blood cell differential, my neutrophils were about 25% below the low range at 31 and the auto count was at 1.3.  I have an appointment with my oncologist Wednesday morning, but I was wondering at what point do they generally postpone the chemo to allow the wbc to come up?  I am scheduled for my second chemo on Friday, but now I'm worried that won't happen. I am disappointed that my levels tanked so early on, and bummed because I have been feeling so good.  I would hate to have to postpone already.

Chris

 

AWK
Posts: 364
Joined: Mar 2013

They can give you a Neulasta shot.  I get one 24 hours after my treatment (just every three weeks) and it is keeping those counts up in the lower acceptable range.  I haven't had any delays related to that one.

hang tough ladies.  Stay strong!  Anne

Cucu me
Posts: 214
Joined: Apr 2015

Abbycat2, you are strong woman.

Editgirl,I hope your counts are good,you just started the chemo.

Thank you AWK for all the info. It's very useful. I don't know anything about Neulasta, but I can check in Internet.

I wish best of luck to all of us!

 

pinky104
Posts: 574
Joined: Feb 2013

I had a very extensive surgery because I was stage IVb.  At the same time that I had that surgery, I had my gallbladder removed for gallstones and an appendectomy.  I lost a lot of blood during that big surgery.  My blood vessels basically collapsed because I lost so much blood. The nurses, even those on the IV team, had trouble getting the two units of blood I needed back into me two days after surgery, but they finally did.  After my third round of chemo, I was extremely short of breath when walking or climbing stairs.  I needed another transfusion for chemo-induced anemia.  I didn't feel any better after that.  The nurses told me that was unusual that I didn't feel better immediately.  I  had refused the Neulasta shot because of its possible complications.  My younger brother had died of a probable heart attack during my chemo, so I wasn't going to accept a med that had a risk of causing a heart attack in me. 

I completed my chemo and still felt short of breath a lot of the time.  At my annual physical at my PCP's office, I complained about it.  I wasn't due to go back to the cancer center for a check-up for another three months.  The physician assistant at my PCP's office, a very smart man, ordered a ferritin (iron) level on me.  It was supposed to be less than 150, but mine read 962!  He told me that I shouldn't take any iron pills.  I'd been taking them because I thought the anemia I had was caused by a lack of iron.  Turns out chemo induced anemia is different.

When I finally saw my oncologist at the cancer center three months later, I told him about my high ferritin level.  He's also a hematologist, so he decided I should have a genetic test done to see if I might have hemochromatosis.  Hemochromatosis is a disease where the body stores too much iron, as it can't get rid of it due to a genetic problem.  I didn't have the normal form of hemochromatosis where there are two abnormal genes, but I did have one different abnormal gene that might or might not cause the disease (nobody knows why it does sometimes and not other times).   Then I had to go get blood taken out of me two weeks in a row.  The nurses took over a pint of blood out of me each time.  The third week, I was supposed to have more taken out, but I didn't feel well.  I called to cancel my appointment, but they told me to come in and be checked.  It turned out I had a UTI and I was already anemic again.  The oncologist figured I couldn't handle the treatments that normal people with hemochromatosis could because the chemo I'd had messed up my system.  After that, my ferritin level has always been under 150, so I haven't had to have any more blood taken out of me.  I took a lot of vitamin C for years, thinking it would protect me from getting cancer (ha, ha), and I have read that vitamin C can make the body store iron.  My doctor didn't really think this was what had happened to me, but I stopped taking it and haven't had any problems since.  My iron levels did go up for awhile when my stepsons gave us a case of Omaha steaks for Christmas and we ate them for several months, but they've gone down since then. 

A lot of people have hemochromatosis and don't even realize it, which is what happened in me.  In the years when women have their periods, the bleeding removes the iron naturally.  But when menopause hits, the levels start going up.  My brother's heart attack was most likely caused by excessive iron.  My father had a heart attack at a young age, too, and his brothers both had bad hearts.  Hemochromatosis wasn't something that was on the radar back then.  Now, a lot of relatives on my father's side of the family have died from an iron build-up in their bodies.

I've read that something like 2 or 3 percent of the population has it.  That's why I'm telling you about it just in case you're another one.  The fact that you didn't feel better after your transfusion made me wonder.  You may just need another unit of blood since your levels were so low.  My hemoglobin wasn't as low as yours.  It was a couple of years before mine got up to normal after having blood put into me during the transfusions and then taken out again in phlebotomies. 

Hemochromatosis can even cause certain cancers.  I don't know if uterine is one of them or not.   

Cucu me
Posts: 214
Joined: Apr 2015

Omg, I wish you stay well and never have something like that again.

I'll ask my doctor for my Iron level, cause I don't think they measure it so far and also I'll ask for Hemochromatosis as well.

I think my diet is wrong at this moment, cause I don't eat meat and eggs, following a naturopat's advice.

After the transfusion only the headache decreased, otherwise I'm tired, no energy, but apetite, and I feel like the food don't satisfy me.

So, I don't know...

Thanks for sharing and the information.

Cucu me
Posts: 214
Joined: Apr 2015

 

So far......

Today my counts were better(I had blood transfusion last friday), but still far from the minimum (except the plateles).

The doctor asked me to give me a shot( I guess Neulasta?!?!), but I refused.

So I have about 20 days to keep my counts not dropping.....Hah!

And to increase the white blood cells, cause they are worse.

 

These were the counts:

             September11        September 18                   Normal range

Hematocrit         18                    27                                    (34-46)

Hemoglobin        6                      9                                    (11.5-16)

Platelets            80                    350???                             (160-400)

Red Blood Cell    2                     3                                       (4-5,2)

White Blood Cell  2                     2                                       (4-11)

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1659
Joined: Jun 2015

Good for you! I hope your counts improve. And even if they don't, they will in time. You only have to do this ONE MORE TIME.

I hope you have an easier time with the after effects this go-round.

Thinking of you.

Cindi

Cucu me
Posts: 214
Joined: Apr 2015

TeddyandBears-Mom!

Ladies thank you all!

I'll try to be more positive. A friend of my told me,

if I think I'm sick -my body will react as it is sick, if I think I'm healthy my body will act as it is healthy.

 

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