Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need transfusions of packed red cells probably monthly. This started 5 months ago. I've been having 4 units (that is approx 1 litre total) (I'm in Australia, by the way). It requires one night in hospital with 2 units each day, and each unit run over 3 hours. I will talk to my haematologist about doing this over 2 consecutive days in the Day Suite and running each unit more quickly - for maybe 2 hours. There has been no mention of iron build up yet - early days.
Please let me know of your experiences being on transfusions long term.
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Jotame
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I hope we hear from Hidden , who had similar problems to you. Meanwhile you might find his posts interesting.
The uncertainty of if/when your bone marrow will recover can't be easy to live with, so please let us all know regularly how you are going, particularly when you'd appreciate some understanding listeners.
Thanks so much Neil. I wish I had The Peter Mac on my door step. (I'm in Adelaide) The disadvantage of having a private specialist is that I don't get the wider view/opinion.
All the best with your up-come trial and treatment.
I needed transfusions for 5 months before starting CLL treatment (and for my first month of treatment). So I have a little experience with what you are going through, but no the long-term aspect. I agree it would be better if you could get this done in the day suite on 2 consecutive days than as an overnight patient in hospital. Just much more relaxing that way in day suite, which is what I did after my first one in hospital. I was getting 2 units of packed red blood cells each time, and I think that took 3-4 hours. At the end, I needed that once every 2 weeks to keep me above 65 (6.5 in US).
I was worried about iron overload if it went on longer. But since mine stopped after 5 months, that didn't seem to be an issue. As AussieNeil mentioned, Hidden has experience with this. Perhaps he will chime in.
I do think it's possible your marrow could recover at some point in future. I don't think doctors can tell for certain if fludarabine damage to someone's marrow is permanent as opposed to resolvable. Hoping the best for you!
Thanks Kim - I definitely live in hope of some bone marrow recovery.
Jo
Hi Jotame,
Welcome to the forum. You are in good hands with AussieNeil and PlanetaryKim and it is warming to be remembered by them.
You have an unusual development in your CLL treatment. This is in itself troubling to deal with because you are nearly alone because there is hardly anyone to share their experience with you. My path was somewhat different from yours though it sounds as though the latter part of my treatment was similar.
I had blood transfusions for six months before I began treatment. I was not producing the red, oxygen carrying blood cells, erythrocytes. As a consequence my hemogloblin dropped the mid sixes and every week or ten days I needed two bags of erythrocyte concentrate, after which I would perk up. I had blood transfusions throughout my treatment and the blood had to screened against anti-bodies. Undoubtedly, the blood transfusions saved my life, many times. I had no significant side-effects though my veins took a beating. At first I thought that blood transfusions were normal for people with CLL and I was astonished to discover this was rare.
What seems similar to your account occurred towards to end of my treatment. After about a year Ibrutinib brought my blood counts to normal. I was, to me strangely, pronounced to be in "remission", this despite needing blood transfusions because I was not producing erythrocytes or their precursors. A bone marrow biopsy showed that it was no longer packed with cells and that there were no CLL cells present. The specialist concluded that the Ibrutinib was repressing the red blood cells and reduced my dose from 3 to 2, and then from 2 to 1 capsules a day. With these reductions the erythrocytes began to revive in the bone marrow. It seems that some of the drugs used in the treatment of CLL have the known effect of suppressing activity in the bone marrow. This is what you seem to describe.
During the period of blood transfusions my ferritin rose to nearly 3000 and I took "Exjade" a "chelation" therapy to remove surplus iron that was supposedly stored in various organs. Exjade did reduce the ferritin but it has never returned to normal levels. At present mine is 2,700. I did not want to continue with Exjade and tried have 500ml of blood taken out once a month for a while. The ferritin dropped temporarily and then rose, this despite having no more blood transfusions. On several occasions my CLL specialist had pronounced with certainty that my ferritin would drop, for example, the newly produced erythrocytes would eat up the excess iron. There was no reduction in my ferritin level, No one can tell me whether I have iron overload or not. A MIR can apparently detect the presence of excess iron. High ferritin can also be a symptom of other malfunctions but no one has hazarded a guess or investigated further. The test for ferritin is not in itself a conclusive diagnosis of iron overload, and is not very accurate.
High ferritin levels are dangerous if they occur over a prolonged period, two years or more. Often people are worried if their ferritin level goes overs the upper normal limit of 400. But, if what I have read is correct, in medical terms a reading of 3000 is "moderate" and 5000 is "high". It is likely that your ferritin levels will rise after blood transfusions because the body cannot absorb the iron content. You have time. I would recommend monitoring the levels, there is no need to be concerned, yet. Yes, speak to your specialist.
I came off Ibrutinib about a year ago and I'm still in remission, though my thrombocytes are dropping to below normal levels. I am of course very grateful for my treatment. It saved my life, but it has its own price. My immune system took a battering, my mental and physical capabilities have declined, and some times I struggle emotionally with the loss of fullness in my life.
Many people have been successfully treated with the new generation of CLL drugs, but the results have only been still be analysed over a few years. Patients are still "guinea pigs" , and those with unexplained or rare development are second generation guinea pigs with even less collated data. It seems that those of us whose treatment does not follow the usual patterns are at the edge of medical knowledge, and a lot of tuition, guess work, ignoring and hope is involved in trying to find a suitable treatment.
Is some of this helpful? I would happily share more if it were useful. One of the great comforts of this site was that as I went through my treatment I found others who had travelled this way before and they helped make the unknown terrain I was facing more familiar and less frightening.
Peter - thank you. I wrote a great reply and just wiped it by mistake!
More later but for now can I ask why you stopped taking Exjade?
Its very curious that Ibrutinib similarly stopped your red cell production.
But am I the only one on the forum to to have this side effect from Fludarabine? I thought my haematologist said 1 in 600 could be effected but maybe I misheard.
All the best to you to - CLL is certainly no walk in the park!
It's so frustrating to wipe a reply that you've been perfecting for a couple of hours! Commiserations!
Some time ago I wrote a post called "Should remission come with a health warning?"
Until I was 70 I had never been seriously ill in my life. Being in "remission" meant "getting better" and "getting back to how I was before", at least for as long as the remission lasted. I found the treatment benign, no pain, no hair loss, none of the "Oh no I've got cancer!" fears and dramas. The remission has been much harder to deal with. Accepting that I have a half-life has been difficult, though undoubtedly half-a-life is a hell of a lot better than none.
The new generation of CLL drugs are tough on the body. Outwardly there is no difference once the swellings have gone done. But the damage to the immune system (in my none medically qualified opinion) and other internal organs that process the drugs seems to be immense. I did not like the side-effects of 3 tablets of Exjade and 3 Ibrutinib capsules daily. I was badly out of sorts. I was pleased to come off Ibrutinib but my skin broke out in sores which have continued to this day. At one tablet a day the Exjade seemed to keep the ferritin in check at around 2,500, but not reduce the levels. Besides, as I said before, I had plenty of assurances the ferritin levels would drop as my health returned. When they remained the same I decided to try what was called "blood letting" - removing half a litre of blood, so that the process of making new blood would use up the excess iron. No more chemicals for my body to contend with! An established treatment from the Middle Ages, but I drew the line at leeches. The blood removing did lower the ferritin levels but it crept up again. I tried Exjade again but it did not seem to make a difference and so I stopped it.
May I suggest you look up on the internet about "chelation" and the side-effects of Exjade, so that you can form your own opinion. Also I found a lot of useful information under "blood transfusions" and "raised ferritin levels" on sites unconnected to CLL.
Again, don't assume that a high ferritin reading is the same a "iron overload".
Ferritin readings are fickle and affected by things such as infections as well as indicative that something is malfunctioning. I still don't know whether I have excess iron or whether something else is going on, though I am sure that the blood transfusions started and contributed to the high ferritin readings.
I'm sorry I can't be more informative. I am frustrated by not knowing what is happening, but then my specialist doesn't have a clue either.
There are many drugs for treating CLL. I had rituxamab and ventoclax before Ibrutinib.
I doubt that you would find 600 people on this site that have been treated by Fludarubine. So I suspect that you are the one in 600. Why don't you write a post asking to chat with people who have been treated with Fludarubine and see what they have to say.
Dashed of carelessly and sent before it is wiped into cyberspace
I have weekly transfusions usually 2 units each over 2 hours. This has been on going for the last year. My ferritin levels have started to rise to high levels last week 1590 because of storing iron. Doctors are monitoring this now, there are meds you can take to reduce this problem so they may need to introduce these.
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