side effects from Procrit

[Russ]

Thanks, Neil. That EPO was taken 17 days after the Aranesp on 9/6/05. That HGB increase to 11.7 was a long term (including 14 units PRBCs) and it did not stay up while continuing with Aranesp. It was up and down with no apparent correlation with the shots. All I can say is perhaps the HGB would have been worse without Aranesp. BTW, my last shot was cut back to 300mcg and there was much less nausea. Would you mind if I e-mailed you a Word doc showing CBCs and treatments?

[patti]

Quote:

Originally posted by Neil:
Its not all that high and remember it takes 14-15 years of high ferritin to impact organs. It is unlikely it will increase further if you do not need any more PBRC tx. There is ample time to get it back down thru chealation.

Neil,

I want to take exception to the above statement. Mom has had hefty organ impact from iron overload and she’s only been RBC dependent for 2yrs. From what we can tell right now her pancreas, gallbladder and kidneys have been affected. It also had started to show in her skin (which is an organ). Prior to her starting exjade her skin was bronze/orange all around her eyes and a little down her nose.

One thing we found out is that iron effects young children and folks over 60 much faster then young people (that came from our onc). For that reason, I think it’s important to clarify your statement so folks don’t think that it always applies to them. For us, we waited too long because we had been holding onto the 10-15yr numbers. We should have started chelating mom no later than 1500 or so because it gave the iron time to cause damage.

Patti

[Neil]

Hi Russ,
Please send your e-mail doc

[Neil]

Hi Patti,
You are not taking exception with my statement. It is a quote from Dr Eric Nisbet-Brown, Dana Farber Cancer Institute who made the statement July 28, 2001 at The AAMDS INternational Foundation Conference at The St. Louis Airport Marriott Hotel.
AND
Neal S. Young,M.D.
Cynthia E. Dunbar,M.D.
Yogen Saunthararajah, M.B.B.Ch
In Youngs book Bone Marrow Failure Syndromes page 85.
They state “Iron chelation with chronic desferrioxamine given as a subcutaneous or intravenous nightly infusion should be considered for patients with a transfusion burden exceeding 20 to 50 units of packed red blood cells or with ferritin levels consistantly above 2500 ng/mL.”
There are more such statements , but am not inclined to dig them out. These were handy.
Not sure of your MILs age. This would be significant in light of the problems aside from MDS that she she suffers from.
Not all patients can be lumped into one box and expect everything to fall into place. One has to consider all aspects.
Russ advised he had a ferritin level of 1000. I would feel sure his doc is aware of that number and will conside how they will deal with it.
You also did not mention her ferritin level.
Can think of at least 2 other reasons for your MILs organ problems not including iron overload.
Lots of facts about you MILs condition that are not apparent.

[uno grasshopper]

[patti]

Neil,

Mom’s ferritin prior to exjade was 3018. She is 76yrs old. Whomever made the statement that it takes 10-15yrs for organ damage – it’s not always that way. For the very young (children) and those over 60 we’ve been told the damage happens much faster.

If there are other possibilities for mom’s damage we’d love to know because we’ve turned every stone we know of and each time keep coming back to excess iron. I’d think most people wouldn’t chelate until 1500-2000 but I think folks should be aware that the older one is the more likely for damage to occur earlier.

Patti

[Neil]

Hi Patti,
I really don’t want to continue quibbling over the effects of iron overload on anyone. I prefer to leave such matters to the docs.
Have more to do with my time than to comtemplate if boiled turtle shell and eye of newt might put me into remission.

[patti]

Neil,

I wasn’t trying to argue. I was just trying to let others know what our experience was with mom and the iron overload because we had just taken for granted what we’d read here so many times. That doc might be right about the 10-15yrs for most people. I just wanted others to know there are exceptions. I think that’s important. I thought this forum was meant to share whatever info we learn along the way since it might help others someday.

When you said you could think of at least two others reasons for mom’s issues I was sincerely asking you what you were thinking because we are trying to figure out what’s going on. If there are other possibilities we’d like to know because we have exhausted what we can figure out (other then iron).

Everything I said was said in sincerity and not meaning at all to be argumentative. I’m sorry if it came across the mail that way. It certainly wasn’t meant to.

Patti

good grief- I just saw I typed “was” should have been “wasn’t.” sorry

[Neil]

Patti,
Renal failure and jaundice

[uno grasshopper]

I find the iron overload topic interesting because there does seem to be conflicting information. Since I also had to deal with iron overload, I joined the Excess Iron forum which is connected with Iron Disorders Institute (IDI)http://www.irondisorders.org/. The moderator of that group is Cheryl Mellan, and she is extremely knowledgeable about iron excess. They have yearly meetings just like this group does with the NIH (same institute where Dr. Neal Young belongs to). However their beliefs on what a “safe” ferritin level is is far below 2500 regardless of age. There are many active members in that forum who have ferritin levels much lower (below 1000) who claim they have sustained organ damage, joint damage, and many other conditions as a result of their iron overload. Seems curious to me that the same institute would have two separate recommendations for iron overload.

My personal take on it is that once the ferritin levels become out of range, damage can start to occur “silently” because “excess” iron becomes a free radial. And it could take a long time (or not, depending upon various existing circumstances)for “clinical” symptoms to appear. What I mean is it has been common knowledge amongst thalassemia patients that iron damage starts to become apparent after about 10 years. However when you think about it, that damage doesn’t happen over night. The damages are gradually happening over the years, until finally, the patient experiences the clinical symptoms 10 years down the road. So if at all possible, it’s probably best to try to tackle the iron overload sooner than 2500. I realise there are complications with side effects of our current approved chelating agents, thus I realise not to push perfect iron levels. But I think it’s likely better to at least aim for under 2000 and closer to 1000. Just my two cents.

The boiled turtle shell and eye of newt comment made me laugh especially in light of the fact that many of the drugs that are prescribed to people like us are made from things like horse and rabbit blood (ATG and ALG serums), our various vaccines are grown and cultured on things like chicken eggs and monkey kidneys (rhesus monkeys were used for polio vaccines), Procrit and epogen are made from recombinant DNA technology; which means, in this case, that they use mammalian cells into which a human erythropoietin gene has been introduced. In Neil Ruzic’s book “Racing to a Cure,” he writes how in the earlier days of producing monoclonal antibodies, “dishwashing soap” was used to stimulated the development of extra proteins. Ha ha! So I could just picture the turtle shells and newt eyes in those labs next to the different brands of dishwashing soap, too.

Take care,

Marla

[TEMBO]

I have read all the postings about tx and iron. All interesting. None of the postings sound very promising. It seems we are at the mercy of drugs to remove the overload of iron? Are there any natural precautionary measures along with tx that can help reduce the iron from the beginning, not waiting for it to become a life threatening problem? I remember the young women that wrote the Cancer Battle Plan. She appeared to win the battle with cancer saddly to only die of iron overload damageing one of her organs. There has to be a better plan. I hope we can find it together.

God Bless,
Karen

[patti]

Karen,

The only natural thing that we are doing for chelating is mom eats the mung beans daily and 6-10 jujubees daily (dried red dates). We have no idea if they are part of what is helping but it certainly couldn’t hurt to add them to one’s diet if tx dependent. As an added bonus, if one has issues with platelets, it’s also supposed to help increase platelets (doesn’t effect them if they’re already normal).

Patti

[Russ]

Speaking of boiled turtle shell and eye of newt, I understand Neulasta is made from the E-coli bacteria. (Ha) Regarding the iron overload, when I mentioned to my hemo/onc about not taking exjade figuring that the effects of iron would be a long way down the road, he agreed with me.
Patti, that ferritin over 3000 was pretty high and it may have been elevated long before that.
Prayers for all.

[Neil]

Aranesp is made in the ovaries of the Chinese Hamster.
That probably explains my craving for sunflower seeds since starting on it.

[uno grasshopper]

Hi Karen:

It appears you have been doing some good reading on your own. I have heard about that woman you speak of. It is a shame. However, I don’t know if your husband is transfusion dependent or not? Or, if so, how often he receives reds. But there is a guy named Bill Sardi who discusses natural ways to reduce iron, BUT it’s generally advice for people whose bodies just plain absorb too much iron. It isn’t really geared towards transfusion dependent people, thus although his recommendations may help those who load iron easily, it may not be enough for people dependent on transfusions. (Although some transfusion dependent people might have “both” problems. . . i.e. transfusions AND a tendency to absorb too much dietary iron).

But since you like to read, here’s a link to one of Sardi’s articles. http://www.knowledgeofhealth.com/report.asp?story=Iron%20and%20Chelation&catagory=Iron,%20ChelationTowards the bottom it has dietary recommendations. But again, I doubt it would be enough for transfusion dependent people, yet doesn’t hurt to know about. The more understanding you have, the better able you can help yourself.

All the best to you and your husband,

Marla

P.S. I did try the IP-6 and inositol when I was transfusion dependent, but it wasn’t enough for me to keep my iron at bay. I did eventually use the desferal until I became independent of transfusions, which at that time I started to do phlebotomies to reduce my iron overload. (Even that was a slow process! Two full years removing 500ml of blood each month to get me back in normal range).

[Author]

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