Advice on my situation - thank you.

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Offline dq

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Advice on my situation - thank you.
« on: May 03, 2008, 10:51:16 AM »
Hi,

I am new on this forum and just wanted to start by introducing myself.
My name is Raf and I am currently 25 years of age.
My situation is Beta Thal. Intermedia with a HB of around 7.5 - 9.9.
9.9 was at the peak, about 4 years ago (2004), with 7.9 being my lowest and most recent result (2008).
I can’t be sure that the Hb is dropping but I know for certain I haven’t had another 9.9 result since then.
My most recent visit to my haematologist suggested I seriously consider removing my spleen (25CM).
I've never been on any treatments apart from 5mg of folic acid per day (no transfusions or iron therapy)
Thankfully, to date, these results have been fine.

My concern is this, with the last suggestion by my haematologist to remove my spleen (which I know is very large) I was never offered any drugs to try and help my HB levels rise. If I was to take these drugs, would my spleen begin to stop growing and possible start shrinking again?

I'm not too sure how it all works but I was just wondering what options I have before I just remove my spleen?
Are there any last drugs to try? The haematologist is asking me to seriously think about the situation.
I know it could rupture causing chaos but my worry is that it won’t solve anything removing it?

Ultimately...

1. What is the benefit from removing my spleen? (Apart from the risk of it rupturing keeping it in).
2. Will I get more HB levels back removing it? If so.. Why?
3. Should I try any drug treatment first or suggest anything to my haematologist before agreeing to remove?
4. Does eating red grapes help my situation or is that for other situations?
5. Will I eventually have to eventually live on transfusions in the coming years (before or after spleen removal)?
6. Should I test my sister to see if BMT is a good option for me?
7. What is the general outcome of patients with Thal. Intermedia like me?


I want to thank everyone for their guidance and support. Much appreciated.
Many Thanks,
Raf

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Offline nice friend

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Re: Advice on my situation - thank you.
« Reply #1 on: May 03, 2008, 11:35:26 PM »
hi :
hope u will b fine n healthy .......... i m not going to send send any suggestion but my own experience .... yep i m going to tell my own experience.... i hve a history of splenectomy ... that opperation toke place almost 7 years ago ....  now my doctor ( who is very kind and knowledgeable person she attend's almost all thalassemia international conferences )) told  me that it was unnecessory in my case as i m a patient of thalassemia beta .... but plz wait for andy and sajid's reply   befor taking any deccission. somewhere on internet i read that splenectomy is choice for those who is getting diagnosed thalassemia minor or anemia  in the age of about 9 years at tat stage if those children remove ttheir spleen then they could be safe to geting blood transfusion ... but anyhow plz wait for andy & sajid's reply bcoze they r the most senior knowing and wise member of this forum and also the administrator of this forum    thanx
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

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Offline Andy Battaglia

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Re: Advice on my situation - thank you.
« Reply #2 on: May 04, 2008, 03:59:15 AM »
Hi Raf and welcome,

First thing I want to say is that your spleen is dangerously enlarged. 25 cm is huge! If you read any posts I have made on this subject, you will see that I am normally very slow to recommend a splenectomy for anyone. Once it's removed, it's a final decision so I always say go slowly in making this decision. But when it's as big as yours, I doubt there's much choice. Your spleen is no longer functioning as it should and is destroying your red blood cells at a rapid rate, and this is why your Hb has dropped and your spleen has swollen to such a large size. It is the red cells that have been filtered out of your blood that are causing this and I fear you are past the point where one can hope for it to reverse itself. Your doctor will tell you if you are at a stage when it is imperative to remove the spleen.

1) The benefit from removing the spleen is that it may result in an increase in Hb. Sometimes this will be a long term change but sometimes it is only short term and your Hb will drop again. There is currently no way to predict the outcome. However, I feel you will get some benefit because your spleen is out of control and removing it, should make your red blood cells last longer.
2) Without the spleen prematurely filtering out RBC's, you should see an increase in Hb. I think because you have a history of having a higher Hb, that it is likely you will return to that level, at least for awhile, which will give you the chance to work at keeping your Hb up with some supplements, such as wheatgrass and resveratrol.
3) Talk to your doctor about the possibility of trying the drug, Hydroxyurea, which is used to raise hemoglobin levels. It is effective in many patients, but not all.
4) Red grapes include a substance called resveratrol which also does raise Hb in some people. Eating grapes is not an efficient way to get resveratrol, but they are a good source and can be used. If you want to try this, get the supplement, resveratrol from a vitamin company. I would suggest using wheatgrass tablets or extract along with it, as they both can be of help.
5) There is no way to know if you will eventually need transfusions. I think you should try alternatives first, such as splenectomy and using hemoglobin inducers as mentioned above. You have a history of a relatively high Hb so you may be able to escape transfusions.
6) Very few doctors will recommend a bone marrow transplant for a non-transfusing patient because of the risks involved with BMT.
7) The outcome for intermedia varies but many patients do require transfusions as they get older. Once again, you have a history of a higher Hb so you may be able to avoid transfusions completely.

Hydroxyurea is often being used with recombinant human erythropoietin (EPO) to add to the increase in fetal hemoglobin. I have also posted at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1685.msg13954#msg13954  about a recent study that examined the effects of certain homeopathic remedies that when added to hydroxyurea increase the amount of HbF being produced. This study also found that many patients using that combination also had a reduction in spleen size. Hydroxyurea might have some positive effect on your spleen size but I don't know if your doctor might be willing to try that before splenectomy to see if you can get some reduction in spleen size. I should point out that splenectomy has in recent years been implicated as a factor in increased pulmonary hypertension (high blood pressure in the arteries that feed the lungs) in thalassemics, and it is long known that splenectomy weakens the immune system, so splenectomy also has some negative results.

If your doctor determines that you are in danger because of your spleen size, he will insist that it be removed. If he is willing to try, you could see if hydroxyurea might help decrease it's size while raising your Hb.

I should also point out that your iron levels should be checked as the large spleen indicates a high amount of bone marrow activity to produce the red blood cells being destroyed, so it is likely you will have excess iron being absorbed from your foods. Drink tea with your meals to help prevent this and have your ferritin checked. I also think you may benefit from taking some other supplements like vitamin E. See the thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0;highlight=vitamin+mineral
Thalassemics are under tremendous physical stresses that deplete many vitamins and minerals and much higher doses are often required for thals than non-thals. Folic acid and vitamin E are two in particular.
Andy

All we are saying is give thals a chance.

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Offline dq

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Re: Advice on my situation - thank you.
« Reply #3 on: May 04, 2008, 09:15:04 AM »
Hi Andy,

Thanks for your fantastic response.

Just a couple of points to note:

I've never really been told 'it’s time to remove your spleen'. The suggestion was made to me about January this year and maybe once last year, otherwise I’ve always been under close inspection with ultrasound to see its size and growth. Nobody ever said to me it was critically large...? They always use to ask me if I was experiencing discomfort and I would say no, not at all. Which is entirely true!

The other point was nobody ever gave me the opportunity to try this drug..! i was never even told about it.
probably because it cost too much to give to patients? I will have another appointment with my doctor asap to ask to try it as per your recommendation. Is there any side effects of these drugs and could it indeed reduce my spleen size even now?

I met with my surgeon who was going to be the person who would remove it should it need it and he said we might be able to get away with it using key hole surgery which suggests spleens reaching this size is now slightly above normal?

In regards to iron levels, I have always had these checked every year and thankfully, they have always been at normal of a normal patient. So I think we are ok there?

Once again, many many thanks for your detailed response. I look forward to your reply.

Thanks,
Raf

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Offline Andy Battaglia

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Re: Advice on my situation - thank you.
« Reply #4 on: May 05, 2008, 04:06:21 AM »
Hi Raf,

Has your spleen been this large for awhile or has there been a noticeable change since your Hb dropped?
Andy

All we are saying is give thals a chance.

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Offline dq

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Re: Advice on my situation - thank you.
« Reply #5 on: May 05, 2008, 08:45:25 AM »
Hi Raf,

Has your spleen been this large for awhile or has there been a noticeable change since your Hb dropped?

Hi Andy,

I will find out asap and get back to you. I think my previous HB result was 8.2 that was like a year ago.
So an average drop of .3 (but i will confirm and get back to you). I am certain I had 9.9 in 2004 or so.
And from then, always in the mid 8's I beleive. So, one result of 7.9.

In regards to spleen size, it's definitely grown over time, the last measurement was 25cm last year which I will ask to get re-measured once I get an appointment with my haematologist. Many many thanks for your reponses.

p.s. do you have any advice on the following:

>>The other point was nobody ever gave me the opportunity to try this drug..! i was never even told about it.
>>probably because it cost too much to give to patients? I will have another appointment with my doctor asap >>to ask to try it as per your recommendation. Is there any side effects of these drugs and could it indeed >>reduce my spleen size even now? Could my body become dependant on it? Should I be worried about >>anything taking it should the doctors give me a trial on it?

Best regards,
Raf

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Offline Andy Battaglia

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Re: Advice on my situation - thank you.
« Reply #6 on: May 06, 2008, 12:47:10 AM »
Hydroxyurea isn't an expensive drug. In fact, it has been mentioned as a possibility for countries where the cost of care is prohibitve. In a study in Algeria, it was used with success in some majors, making them transfusion independent. Hydroxyurea is also used as a chemotherapy but in much higher doses than what is used in thals. It seems to be quite tolerable by patients. It may have some effect on spleen size if it does raise your HB, but this also is not consistent with all patients. It does seem to work better in terms of raising Hb and also reducing spleen size when used with other natural Hb inducers. It is not addictive and you won't become dependent on it. You may depend on it to keep Hb levels up, but it doesn't cause a physical dependency, and in fact, many patients use it for awhile and stop because it has not been effective for all patients. A tendency to be able to produce fetal hemoglobin makes patients better candidates for hydroxyurea.
Andy

All we are saying is give thals a chance.

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Offline dq

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Re: Advice on my situation - thank you.
« Reply #7 on: May 07, 2008, 09:23:18 AM »
Hi Andy,

I just wanted to start by saying MANY thanks for all your time and help in guiding me.

Just a few concerns / questions.

1) I've started a daily feed of red grapes and wheatgrass in the hope it will make a difference (Any idea on dosage?).
My appointment with my haematologist is the second week of June, so it’s just over a month before she sees the new me (if it all helps :) ) my question was, if this really does start to bring my HB levels up, will the spleen begin to shrink? Or does that 'need' a chemical to also be present like Hydroxyurea? Can the spleen shrink without the drug using just organic methods?

2) Should I worry about iron content in Wheatgrass or Grapes? I am currently eating grapes fresh and Wheatgrass through blended drinks shots until I find tablets. My iron levels have been blood tested yearly yielding safe levels.
I don’t want this to damage anything...?

2) Is there anything else I can try over the period of the next 3 months?
(which is when if all else fails, I will probably remove it) - its 25cm now, I don’t know if 3 months can see a change?

3) If no increase in HB levels is present and I have to remove it, will my HB levels rise afterwards...? I know you explained it to me, but my really worry is that I will have to go onto transfusions at some point. I've only ever had one after a hernia operation but I have been entirely transfusion free all my 26 years.

4) Lastly, can you recommend any doctors in UK - London that specialise in the field. I am happy to try any drugs / tests and I don’t want to be limited by doctors who just think the solution is to remove my spleen.

Andy, you truly are the man. Once again, many thanks for your help.

Thanks,
Raf

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Offline Andy Battaglia

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Re: Advice on my situation - thank you.
« Reply #8 on: May 10, 2008, 04:34:43 PM »
Hi Raf,

Eating red grapes is not an efficient way to get resveratrol. It would be better to use the supplement. If you're taking wheatgrass juice, take one to two shots per day. It doesn't taste good so most people switch to tablets or extract. It is known that it takes up to a year to see what effect wheatgrass is having, so don't expect any quick changes, although you may notice a higher energy level and it is also a good tonic for the immune system. I doubt either will have any quick effect on your spleen. Together, with hydroxyurea, they might, but this is definitely not certain. The problem is that your spleen is seeing your own blood as defective and filtering out your red cells prematurely. Hydroxyurea can increase fetal Hb and also somewhat suppresses bone marrow activity, so the result might be a positive for your spleen, as excess red cell production is only leading to more spleen activity.

The iron you get from wheatgrass and grapes is not really very high, but if you switch to the supplements, it isn't a problem at all. Wheatgrass tabs have very little iron and the extract has none. Resveratrol does not contain iron. Drink tea with meals to help prevent iron absorption from your foods. The supplement, IP6 is a natural iron chelator that may be of some help if your iron is high. It is also a powerful antioxidant, and patients using it have reported positive changes, such as lighter skin (means less iron in the tissue).

Most patients will see at least a temporary rise in Hb after splenectomy. The reason I asked about spleen size in relation to your Hb drop, is that it might give some clue as to whether removing the spleen will restore your Hb level. From what you've said, I think there probably has been some correlation between the two.

The thalassemia center I know about in London is

Thalassaemia Care Centre in London

Dr. Farrah Shah, Specialist (Thalassemia Physician)
Emma Prescott, Specialist (Thalassemia Nurse)

The Thalassemia Clinic, Mercers Ward
Whittington Hospital NHS Trust
Highgate Hill, London, N19 5NF

Phone Number
02072723070

Dr Shah has an excellent reputation,  but please be advised that doctors will most likely be alarmed at your spleen size, so don't expect too much. I think most would recommend splenectomy, but you should also ask about trying hydroxyurea first to see if your Hb level can be brought back up by that route. I think Dr Shah can at the least, advise you if this is practical at all.

Sorry it took a few days to respond but I often can't stay caught up during the week, because of work. I do try to catch up on weekends, but the amount I have facing me this weekend here and at home and also helping the Hong Kong thals with an ongoing project, makes me think that some things won't get done this week.
Andy

All we are saying is give thals a chance.

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Offline dq

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Re: Advice on my situation - thank you.
« Reply #9 on: May 12, 2008, 11:42:59 PM »
Andy - thanks a million.
If your ever in the UK I owe you a drink...!
PM or email me buddy.

Many thanks,
Raf

 

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