May 9, 2017 at 3:55 pm #94878
Thank you for all the great information and advice. My MIL had blood work again today and her levels are all back up to normal range again. The only number that is still off is her AST liver enzymes which are at 74, but down from 155 a few weeks ago so that’s progress also! I have read that the AST isn’t really a good indicator of a problem anyway so we are not worried about that number!May 6, 2017 at 9:30 pm #94877
Julie…excellent information. Thank you.
MarionMay 6, 2017 at 5:49 pm #94876iowagirlMember
When I was on Gem/Cis, my hemoglobin dropped to 7.0. I could barely walk 20 feet without being breathless/short of breath and felt horrible. The ER consulted with my oncologist who did order a transfusion. But, they were still hesitant with the hemoglobin at 7. For whatever reasons…low blood supplies….I don’t know….but one hospital has decided to put the threshold at 7.0. I got the transfusion and two days later, felt much better.
With the MDS that started last fall, I have gotten a number of packed red blood cell transfusions…..and again, the one hospital my clinic was associated with, still had the threshold of 7. Even at 7, they sometimes balk. However, I changed oncologists…another clinic entirely in January, and they are more closely associated with our other hospital, which has the area blood bank. They leave it up to the doctor more to decide and my new onc said that he transfuses at 8 to try to keep the hemoglobin more at 9 or 10, which is more livable/quality of life.
To show just how much divided opinion there is on this subject, my Mayo hematologist said transfuse at 7, unless very symptomatic at a higher number, because everybody is different.
To further complicate this whole subject, if someone needs a lot of transfusions then there is a question as to ferritin level in the blood and body organs from getting too many transfusions . The ferritin/iron can damage organs if the number gets too high. So, for someone who may need to get a lot of transfusions, it becomes an issue of balanacing quality of life with possible iron overload problems when looking at the question as to when to transfuse red blood cells.
Iron chelation is possible to remove some of the excess iron from the body if the ferritin level gets too high from multiple red blood cell transfusions, but, I was warned by my Mayo doc that there can be significant side effects, so he’d rather I stayed away from that. He said that regular blood tests, withdraw blood, which also lowers the ferritin level, ….which is actually a treatment method for iron overload as well…..and obviously would have significantly less side effects. I’m not getting as many blood draws now as I was a couple months ago……because I’m in remission from the blood cancer. It takes many blood draws to bring down ferritin levels, so I’m not sure what next. There has apparently been found a correlation between high ferritin levels and less survival time for MDS patients.
They generally check ferritin levels after about 10 red blood cell transfusions. I read one place that said a ferritin level at 1000 was the threshold for starting chelation therapy. They checked my ferritin level after about 8 transfusions and it was at 1400. I haven’t seen the hematologist here at home since then to discuss it, but as I said, I did talk to the Mayo doctor who really wanted me to stay away from the chelation drugs.
As for platelets, the guideline I was told at Mayo was when they get to 15K, then they transfuse. The problem with platelets though, is that they don’t last long in the body…maybe about 4 days. The body “chews” them up pretty rapidly. So, if the count goes back down again after a transfusion of platelets, you may need more frequent platelet transfusions. My platelets were down as low as 11K and they did transfuse. I also got a transfusion before getting my port put in.
JulieMay 6, 2017 at 2:15 pm #94875positivityParticipant
I was just curious about the hemoglobin since you were asking regarding a blood transfusion. My mom’s experience is being recommended one when it is below 8, but I am not sure about the low platelet count. Ask your oncologist if she needs a blood or platelet transfusion.
As for the vitamin C, that is general knowledge that it boosts immunity and therefore white cells to fight infection or viruses.
” I am not a medical professional, but one who is going through the same journey”May 6, 2017 at 12:41 am #94874
hopeseeker…from what I have seen on this site, the vast majority of patients recover from low platelets all on their own. However; doctors often prescribe Neupogen ( filgrastim )for neutropenia.
MarionMay 6, 2017 at 12:25 am #94873
Please understand that the advice given on this site must be verified by a health care provider.
MarionMay 5, 2017 at 6:51 pm #94872positivityParticipant
Does that mean her hemoglobin, and RBC are low also? If the hemoglocin is below 8, then yes she should get a transfusion. Keep immunity up with a lot of citrus or Vitamin C foods such as oranges, strawberries, or lemon water. Of course make sure she is not allergic. Check into supplementation also with Vitamin C, with the healthy diet. The vitamins are never a substitute for the healthy diet.May 5, 2017 at 12:58 pm #94871
Thank you for the article. Seems good hygiene and eating well are the best option. It’s just so scary to think her levels are so low.
HopeseekerMay 5, 2017 at 12:56 pm #94870
Thank you for that advice. I didn’t realize that it could thin the blood. I am going to make sure my MIL asks her oncologist before she decides to use vitamin E.
Does anyone have any info on low platelets? 16 just seems SO low. I guess everyone is a little different. I guess her platelet level could be back up to a good range before her next chemo treatment this coming week? This is just all so new to us and we are trying to be educated and aware of what’s going on and what we can do to help her.
HopeseekerMay 5, 2017 at 7:23 am #94869FayParticipant
I would be hesitant to use vitamin E since it has blood thinning properties and with such a low platelet count (16), her baseline bleeding risk is already high. You may want to ask her oncologist for his or her opinion on this matter as well.
FayMay 5, 2017 at 4:49 am #94868
Hopeseaker….In addition to nycdaugher’s advice you may want to take a look at Livestrong’s recommendations: http://www.livestrong.com/article/17407-increase-white-blood-cells/
Also, remember that patients with low WBC (leukopenia) need to practice good hygiene, hand-washing, and food safety practices, as they are prone to infection.
Good luck and keep stay in touch. We are in this together.
MarionMay 4, 2017 at 10:21 pm #94867nycdaughterParticipant
My mom’s white blood cell counts have never been really low, but whenever they fall below the normal range she eats pomegrante, which is high in vitamin C and is supposed to help WBC count. I think mango is also supposed to be good for WBC production.May 4, 2017 at 6:08 pm #13290
My MIL met with her oncologists on Tuesday and found that her liver is functioning better than it was at the end of March when she was admitted to the hospital with a mass blocking her bile duct from draining her liver. This is good news to us and telling us that her liver is not shut down.
She has had 2 appointments so far for chemo, but her last blood work showed that her white blood counts were low and her platelets were at 16. This is very low and if they don’t go up she will need a blood transfusion.
Any tips to ideas to help her? Heard that vitamin E can help white blood counts. Platelets seem to be a bit me complicated? My husband wants to get his mom a topical vitamin E oil to use and anything else we can to help her along. Would this be the best option?
Thank you all for your advice and support!
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