Hi there
This is my first posting as I have just found the site.
I have a real problem with my blood count. I had a right mastectomy and node clearence in January this year and am triple negative and unable to have Radiotherapy due to another (unpleasant) condition called Scleroderma.
As i have been on immunosuppressants for the other condition and have always had difficulty with my white cell count, when I started on FEC in March I was put on a 75% dose and given Filgrastin to inject to help my bone marrow.
3 weeks later when I went for my 2nd FEC my neutrophils were at the lowest allowable level for chemo so I went ahead.
On returning for my 3rd FEC my WC and Nt levels were too low so it was delayed for a week and I was given a longer course of Filgrastin.
Anyway the whole thing was delayed which worried me and now no 4 has been delayed again 2 weeks so far and I have to go back again next week. My neutrophils are at 1.3 even 2 weeks late and on 75% dose and with maximum Filgrastin.
Has this happened to anyone else?
What is the effect of all this?
Does anybody know of anything I can do to raise my cell count?
I am pretty worried.
Sorry I cannot help but I am sure someone will be able to offer advice soon. Also, dont forget the BCC helpline is a good place to go for information. Good luck.
It might be worth asking your onc about changing to Neulasta - this is marketing material so may not be totally reliable, but it suggests Neulasta is more effective than Filgrastim:
neulasta.com/patient/howcanhelp/neulasta_neupogen.html
I didn’t have your other issues during chemo, but I did have Neulasta and my neuts never fell below normal range. It is expensive though - so you may need to be quite forceful to get it.
finty x
Hiya there Girl,
Regret to hear about your wbc problem, I’m in the same club!
I’m having FEC (in theory x6)
Fec 1 went ahead as planned but when I went for bloods 3 weeks later for FEC 2 my neutrophils was 0.03 and wbc 0.9. I was then given 2 x filigrastim.
FEC2 happened on time as neutrophils had gone up to 1.1 and I had 7 x filigrastim.
I then went for bloods for FEC3 and again wbc / neutrophils were too low. I had to wait another 5 days then had FEC 3 and 7 x filigrastim.
I’m still waiting to have FEC4 , I was due to have it on April 18 and go back tomorrow for bloods, as my neutrophils/wbc have been too low.
I have asked my Onc what I can do to improve my WBC but he’s said that I can’t really do anything.
I’m sorry that you are having problems and hope you’re feeling ok. If you get any information from your Onc I’d appreciate knowing about it!
How have you done on other side effects, hopefully not too bad?
Good Luck
Helen x
PS I asked about Neulasta jab but my PCT don’t give it as too ££££££££££
Hello
Reading your post has taken me right back to my chemo last year. I had it first and right from the start had problems with my white cells and neutrafills. After the first one I was neutrapenic and in hospital for nearly a week, awful.
Like you my one of my chemo’s was delayed by 3 weeks. I was terrified thinking that my lump would start to grow back as it had shrunk dramatically. My oncs advice was to take it easy have very gentle exercise and i’m not sure if it was this but i had my last 2 chemo’s on time although my neutrafills were only about 1.1 each time and after every chemo i had filgrastin for 7 days.
My heart goes out to you but the only way I could stay sane with it all was to keep in mind my onc’s words that my bone marrow was very sensitive and it shows the chemo is working.
Your body will naturally regenerate the wc and nt, mine took ages and I do not have any other conditions like you. Chemo finished 5th aug and when i had mx on 5th oct my levels were still low. I was told to try Manuka honey but i’m not sure that this helped me. So i’m sorry i can’t give you any advice other than i understand how you feel and please try not to stress and to keep yourself as well as you can, you are nearly through it…
Take care fluffy xx
also the problem is when you have your bloods done before chemo they are just a snapshot and your cells could be going up as opposed to down and for one of my chemos when i couldn’t have it on the thursday the bcn suggested i come back on the monday rather than wait a week and they had just gone up enough. Hope this has helped x
My WBC count went from 0.5 to 5.5 through diet alone. Mainly raw, no salt, alcohol, meat or dairy or sugar etc
I said ‘no’ to the injections and my onc could barely believe that the wbc count change was only down to diet. He still wasn’t interested in finding out more and I’m sure he tells other women that there is nothing that they can do!
OMG Gretchen that is amazing… I only wish I had known that last year as I hated the filgrastin injections.
Sometimes I do wish the medical profession were a little more enlightened with regard to diet x
…and homeopathy! Another one to consider. Has kept my wbc nd neutrophils at a good level. I was very unsure at first, but now swear by it!!
Sadie Xx
Hi Fluffy Chick
Yes it is disgraceful. While many women have no ability to make such radical changes, it does not mean ALL women cannot do it!
Oh, and the comment that is shows the chemo is working is possibly incorrect… My WBC fell immediately to 0.5 after my first FEC (I was a reasonably healthy 36 year old), but after 3 FEC I found another lump, then changed to taxotere! My first 3 chemos were all delayed due to low wbc.
I only had the injections for round 4 ( they were slow to give me the injections), then changed my diet radically. My wbc stayed over 5 for the next three and I even had my mx 18 days after my last chemo as my wbc was back up so quickly.
Hi Gretchen, please could you give me a rough idea of typical meals etc. My WBC count is consistently low despite 10 lots of injections each time. Am already taking Manuka honey but it doesn’t seem to be doing much so would be grateful for any other help I can get please.
Thanks
Jo
Thanks for all your feedback.
I will ask about the single larger dose of Filgrastim which is given through the line as I had 11 injections last time and that didnt do it!
As regards diet. Since the mastectomy I have stopped all alcohol, dairy and gone mostly vegetarian eating only 2 or 3 portions of animal protein a week.This being chicken, fish or egg. I am eating loads of soya, pulses and wholegrains and almost all organic. I am also making juices. The whole caboodle is costing a small fortune but hey, I dont get up to any other mischief.
My daughter swears by Manuka but I thought that was more of an anti bacterial.
A neighbour gave me a tray of wheatgrass and a loan of her special juicer but O Lordy Lumpkins, vile doesnt do it justice.
As for meals. I make all kinds of things with pulses and use Quorn although thats not organic. I REALLY miss cheese.
Vanessa
Hi JO C
Here is the link to my original post
breastcancercare.org.uk/forum/viewtopic.php?f=25&t=25655&p=423555&hilit=Gretchen+please+read#p423555
I was super-strict and now would eat even more raw vege. Very important to cut our sugar (I went two whole months without a single biscuit!). Two reasons: one, sugar feeds cancer cells, but also sugar lowers immunity.
It may be an idea to take up gentle yoga and to try and get out for a brisk walk every day too.
Also Girl, there has been a lot of discussion on soya in this forum and the general concensus is that it is not good, but especially the very over processed stuff like quorn, and if you ever do eat soya it is quite important that it is non GM and organic. I tried wheat grass too, and am pretty open to unusual and healthy foods, but wheat grass makes my toes curl just thinking about it!!
Hi Gretchen,
Im realy not sure where you got the idea that"Sugar Feeds Cancer" this is a misconception and something thats like so many other things we often read online an “Urban Legend” there has never been any scientific evidence of “Sugar feeding Cancer” it realy is just another Cancer Myth.
(The Sugar Myth is on page 2)
mayoclinic.com/health/cancer-causes/CA00085
/NSECTIONGROUP=2
hopkinsmedicine.org/kimmel_cancer_center/news_events/featured/cancer_update_email_it_is_a_hoax.html
junkfoodscience.blogspot.com/2008/03/do-you-fear-sugar-might-cause-cancer.html.
Hi Girl,
It might be worth you asking you onc about the GCF-S injections (granulocyte-colony stimulating factor)Neulasta , this is a one off injection usealy given 24hrs after each chemo cycle which is often very effective ,i was given the Neulasta jabs as i was on a 2 weekly chemo regime so my bloods didnt have the normal amount of time to recover between cycles, the Neulasta worked well for me and i never did have any problems with low neuts.They are pretty expensive injections though, i read on my notes they were just under £1,000 per jab so not cheap but they are very good, so possibly this may be an option for you also.
Hope this helps, and please can i just also say especialy to all the New ladies on BCC, it is always extreamly important to have a chat with your medical teams for some help and advice before considering making any dietry changes or taking any suppliements so as to not interfere with any of your perscribed treatments .
Best Wishes to you all.
Linda
I don’t want to start a debate on sugar here but what I would say is that sugar doesn’t have any nutritional value so far better to get most of the calories needed for your body by other means if possible. Or at least keep high fat/high sugar things to a minimum.
I found home made vegetable soups were good as my appetite was severely affected by the chemo.
I agree that GCF-S are good as the one time I wasn’t given any cover I developed neutropenic sepsis. But even with them I still experienced a high temperature after every taxotere and it was borderline each time whether I was to be admitted back into hospital.
In the end, it may be a case of your chemo just taking that bit longer as you wait for your blood levels to rise up. I know it’s very hard with delays not to feel anxious - I had a few delays mainly down to waiting times for treatment. The main thing is to get through and we have to go at our bodies own pace. Elinda x
“In summary, sugar does not “feed” cancer cells. However, a lot of sugar can cause our bodies to produce too much insulin, and this is not good for health”
caring4cancer.com/go/cancer/nutrition/questions/sugar-and-cancer-is-there-a-connection.htm
Melxx
Hi Girl I don’t know if you will get anything from this but thought I would post it.
caring4cancer.com/go/cancer/nutrition/questions/diet-for-better-blood-counts.htm
Melxx
Thanks to the ladies above for info about sugar. Personally, I am trying to limit the intake of refined sugar, because while I appreciate (as Cornishgirls rightly points out), that sugar doesn’t feed cancer cells, I do believe that it can effect insulin levels (as Stressy-messy say’s), which can increase cell production.
The other reason, is that sugar can produce a thing called insulin resistance, which in turn can cause the body to lay down fat around the waist. The problem with this, is that for post-menopausal women such as myself, these fat cells around the waist, can become oestrogen producers - which is not good when you have oestrogen receptive BC.
Hi All,
I think there is often a lot of confusion over which “foods” can adversly affect out blood sugar levels, so its important for people to understand of course how biologically our bodies use food, “ALL food energy regardless of its source is converted into identical simple sugars that our bodies use for energy to function. Similarly, our bodies use the same chemical nutrients from foods regardless of their source. Just like healthy cells, cancer cells don’t care where the sugar comes from.”
The Glycaemic Index (GI) is a ranking of foods based on their overall effect on blood glucose levels, the trouble is determining the GI of a meal is not as easy as reading numbers off a chart, Because the addition of fat and protein slows down the absorption of carbohydrates,so if people were to confine themselves to just “low GI foods”, their diet would be unbalanced and high in fat, which would lead to weight gain and increase the risk of heart disease amonst others. So its important not to focus exclusively on GI and to think about the overall balance of our diets.
I think if you look st how “Diabetics” manage blood sugar levels it gives a clearer picture .
endocrinologist.com/The-Diabetic-Diet.html
Of course regardless of “Diet” many other factors also play a part in altering Blood Sugar Levels in all of us too,
Exercise helps in burning excess sugar and reducing insulin resistance,Stress can increase your blood glucose level if you turn to “comfort foods”, especialy if you overeat and introduce a higher than normal amount of glucose in the blood,blood sugar levels often spike in the mornings as a result of the body releasing hormones which increase insulin resistance it is thought. However, another explanation could be a slow metabolism of dinner from the night before. Some research also suggests that not getting enough sleep causes the liver to produce/release more glucose, increasing your blood sugar levels. Illness can greatly elevate your blood sugar,Hormones can affect your blood sugar levels also,Many drinks contain fat, protein and carbohydrates as well, they affect blood glucose levels in the same way as food,Some medications interfere with how glucose and insulin work in the body,and so the list gos on.
Lots to think about ,but the notion that “Sugar Feeds Cancer” is just another Myth.
Balance and Moderation is Key!
Linda
It simply isn’t true that all food sources of energy are used by the body in the same way. It is known that fructose, which accounts for 90% of sugars used in manufactured foods, can only be metabolised in the liver (where it can cause fatty liver) and very few other cells, and is very quickly converted to fat. Glucose, on the other hand is metabolised completely differently, and can be used much more easily by the body for energy.
There is a lot of research under way investigating the links between raised insulin levels and breast cancer - with diabetic drugs in stage 3 clinical trials and showing very promising results. My onc told me to avoid sugar as much as possible.
I dont want to get into a debate on this subject as heads may be exploading reading this, but nevertheless i think it is important to clear up the “Sugar Feeds Cancer” Myth as is clearly shown above , this theory is a total misconception and something that is often portrayed on some of the more unreptuable cancer website.
There is a trial taking place in Canada looking at Metformin (a Diabetic drug)as a “possible” future cancer treatment, but its far to early to say whether this drug will be usefull untill the results come in, and what the outcome of the human trials will be.
It is correct that it has been found that some cancers do have elevated Blood Sugar Levels, however what causes this to happen has not been established we also need to remember that there are infact many causes of elevated sugar levels which are of course non diet related.
“The Facts: All cells (including cancer cells) in our body use sugar (glucose) from the bloodstream for fuel. But that blood sugar comes from all carbohydrate foods, including healthful vegetables, fruits, whole grains and low fat dairy sources; some glucose is even produced within our bodies from protein.”
aicr.org/site/News2?page=NewsArticle&id=19023&news_iv_ctrl=2303
As i said i dont wish to be drawn into another debate that could spiral off track of the original posters concerns, so i shall leave this discussion now to others to explore, hopefully the important question of the “Sugar Myth Feeding Cancer” claim has now been cleared up for anyone who may have been concerned about this issue.
Best Wishes
Linda