Thalassemia Patients and Friends

Discussion Forums => Thalassemia Intermedia => Topic started by: poo gill on November 02, 2007, 05:13:36 AM

Title: advice on spleenectomy
Post by: poo gill on November 02, 2007, 05:13:36 AM
Dear All

Wated to update you on my son Prat's condition and also wanted some advice from you guys.

Prat has been on Hydrooxyurea for almost 4.5 years now ( Nov 12, 2002 onwards). Since then he has got 2 transfusions. However this yar due to viral infections his hb has gone down from 7.5 to abt 6 and we had to transfuse him 2 times. Also he had anotherbout of viral infection and his hb went down + his WBC also went don to the  dangerous levels. Doc had stopped his hydrea for one month to asses wether it is the hydro which is bringing down the WBC or wether it is the viral infection. Anyways after a gap of 3 weeks hydrea was atarted again. Still his hb is  not coming up,he is 5.8(Oct 23, 2007). Doc wants to give hydrea   some more time and is going to do another CBC on Nov 13, 2007 . However Prat's haemtologist has said us to consider splenectomy, He has inidcated that the time has come and we shud move in that direction.

I spoke to Mr Khalifa about it, he wasnt very encouraging. i am in double mind right now, wether I shud go the transfusion way or wether we shud do away with the spleen. Wht kind of problem i can encounter in the long run.

Also I am still exploring the possibility of Recomorn and L Carnitine. Am not sure bout the side effects of these if there are any.

Will appreciate your expreinces and advice onthis matter, it will  help me to take the right decision.

thanks

Puja
Title: Re: advice on spleenectomy
Post by: §ãJ¡Ð ساجد on November 02, 2007, 06:21:24 AM
Hello Puja,

Splenectomy has shown effectiveness in many transfusion dependant Thal. Intermedia by making them non-transfusion dependant without the use of HbF inducers for long time to come.

What is his Serum Ferritin level. Is his spleen too big? A spleen is a useful organ that keeps blood clean of dead cells and certain bacteria but it can become troublesome by becoming overactive and start to destroy healthy cells too. With it's removal that issue is solved but you would have to take regular antibiotics to fight bacteria otherwise your son will get sick.

I hope that your son's blood counts come back to normal soon.
Title: Re: advice on spleenectomy
Post by: Manal on November 02, 2007, 11:14:28 AM
Hi Puja

What is the size of his spleen and before the viral infection what was the average of his HB ?

Manal
Title: Re: advice on spleenectomy
Post by: poo gill on November 02, 2007, 02:24:28 PM
Hello Manal & Sajid

His spleen was 2 cms enlarged when he was 2.5 years old  and now it is about 3-4 cms . I think Spleen enlargement is not a cause of concern here for the Doc. It is the Hb which is not getting to its normal level of 7.5 as it normally reaches when he is on hydrea.

Thanks

Puja
Title: Re: advice on spleenectomy
Post by: Canadian_Family on November 02, 2007, 04:34:35 PM
Hello,

If my daughter is in this condition, and given the spleen is not hugely enlarged and hopefully functioning properly than I may go against the Spleenectomy. I am always in the view that one procedure led to another, spleenectomy has its disadvantages as Sajid mentioned. Blood transfusion has its setbacks as well. The question is which decision you want to take. I suggest you to fully investigate how other patients are doing after Spleenectomy, are they transfused free, are there any other side effetcs etc. If the benefits outweigh the risks than go for it.

Title: Re: advice on spleenectomy
Post by: priya on November 02, 2007, 07:40:53 PM
Hi Puja,

As far as i have consulted with Hemos in India they said that spleenetomy is not advisable for small age, as kids are more prone to infection and spleen help to maintains clean blood. After 10 or 12 yrs. of age it is more advisable.

But its also true that in many Thal intermediate after spleenetomy they maintains reasonable HB without transfusion.

Are you giving wheatgrass juice to Part.? It could be rally helpful to him.

Pls. keep us update. I hope Part’s HB come back to normal soon.

My good wishes are always with you and Prat. :hugfriend

Dimple.


Title: Re: advice on spleenectomy
Post by: Andy Battaglia on November 03, 2007, 12:21:37 AM
Hi Puja,

Don't rush into a judgment about a splenectomy if the spleen itself, is not large or inflamed. Other means should be tried first to raise the Hb level and a splenectomy should be looked at as a last resort. Keep in mind that this low Hb was caused by a viral infection and even though Prat's Hb level has not yet risen to its previous level, it does not mean that it won't. An aggressive approach to raising the hemoglobin level and protecting the red blood cells from premature death should be undertaken. Folic acid, vitamin E, wheatgrass in extract form, resveratrol can all be safely used along with hydroxyurea to boost Hb. L-Carnitine is a natural supplement that is an amino acid synthesized within the body. It is very safe and studies have shown it to extend the life of red blood cells. It would be advisable to try it.  Recormon is a drug used to boost red blood cells. It is a brand name of erythropoietin (EPO). Recormon has many possible side effects but it is used successfully to boost the blood supply. You can read about it at http://www.medsafe.govt.nz/Consumers/CMI/r/Recormon.htm

I would also suggest trying to boost Prat's immune system. If you google "boost immune system" you will find many pages such as the following.

http://www.microsoft.com/canada/home/healthandwellness/2.2.25_boostyourbodysimmunesystem.aspx

Quote
Boost your body's immune system
Super foods help combat an assortment of ailments

By Cheryl Embrett
   
   

One of the best prescriptions for good health is also one of the easiest to follow: Watch what you eat. Every day, new studies prove that eating the right foods regularly can help reduce the risk of cancer and heart disease, banish the blues and increase energy and vitality. Here are 10 nutrient-packed "super foods" that should top everyone's grocery list.

1. Broccoli
This is one mean green! Broccoli is chock-full of the phytochemical sulforaphane, which has been making headlines because of its potent anti-cancer properties. It's also a rich source of beta-carotene (good for the eyes and immune system, among other things), fibre and vitamin C.
Toronto registered dietitian and author Liz Pearson was so convinced of the health benefits of this "King of Cruciferous Vegetables," that she called her first book When in Doubt, Eat Broccoli!: But Leave Some Room for Chocolate (Penguin Books, 1998). For fast, easy and delicious ways to add more vegetables — including broccoli — to your diet, visit 5 to 10 a day.

2. BlueberriesIf you haven't gone blueberry picking since you were a kid, here's a reason to start again. In a peer-reviewed study of 100 common fruits, vegetables and nuts, presented in the Journal of Agricultural and Food Chemistry, these little blue jewels had one of the highest antioxidant capacities (the ability to combat cell-damaging free radicals that can lead to heart disease and cancer). And, like cranberries, they appear to fight off urinary-tract infections by preventing E. coli bacteria from sticking to cells in the urinary tract.
John Stanton, president of the Running Room Canada, says he always starts his day with a big bowl of fresh fruit, including blueberries when they're in season. "It's light, it's healthy, and then I'm ready to run." For more on the power of blue, including tasty recipes for everything from wild blueberry chicken breasts to blueberry sorbet, check out Wild Blueberries.

3. Flax
"Ground flaxseed is the one thing I make sure I eat every day," says Mairlyn Smith, co-author of The Ultimate Healthy Eating Plan: That Still Leaves Room for Chocolate (Whitecap Books, 2002). Smith says flax is a great source of both soluble and insoluble fibre (which makes it a natural laxative), as well as plant lignans, which may reduce the risk of developing hormone-sensitive cancers, such as prostate and breast cancer. Flaxseed is also high in Omega-3 fatty acids, which are known to protect against heart disease. She eats a flaxseed muffin or sprinkles a tablespoon of ground flaxseed on her cereal every day. For more information on the health benefits of flax, including delicious ways to cook with it, visit the Flax Council of Canada.

4. Garlic
Since ancient times, physicians have used the "stinking rose" to treat a number of health conditions, including heart disease. Garlic contains allicin, a phytochemical that may lower cholesterol and make blood platelets less sticky, cutting the risk of clots. Mississauga, Ont., naturopath Rana Singh swears by the immune-boosting, cold-fighting power of the humble garlic bulb. He recommends chopping or crushing two or three cloves of fresh, raw garlic and adding it to whatever you're eating. For information on the health benefits of garlic and great ways to cook with it, visit The Garlic Information Centre and Garlic Sleuth. (Note: Consult your doctor before including more garlic than is customary in your diet.)

5. Green tea
Green tea is loaded with powerful antioxidants, which may protect against cell damage that leads to aging, and help prevent heart disease and cancer. Green tea contains a polyphenol known as epigallocatechin gallate (EGCg), which in animal tests has been shown to prevent the formation of tumors. Researchers at Purdue University found in laboratory tests that EGCg killed human breast cancer cells but did not kill noncancerous human breast cells.
Paulette Bourgeois, author of the Franklin the Turtle series of kids' books, drinks green tea several times a day. "It's not only healthy, it's soothing," she says. For more information on the health benefits of tea, visit the Tea Council of Canada.

6. Skim milk
"The one food I consciously remind myself to consume and monitor regularly is milk, since I know that I may not drink enough of it in the course of my regular routine to keep my bones strong," says food writer and cookbook author Dana McCauley. She's not alone. Most women don't get enough calcium, and one in four white (rate is lower in black and Hispanic women) women will develop osteoporosis. Studies have found that increasing your calcium intake can also help relieve the symptoms of PMS.
To meet your daily quota, reach for three servings of milk or milk products. After a tough workout, make it low-fat chocolate milk, advises McGill University fitness coordinator Jill Barker. "It has the requisite amount of carbs and protein needed to promote optimal recovery in the working muscles." Visit the Dairy Farmers of Canada for more tips on adding calcium to your diet.

7. Salmon
Fresh or canned salmon is one of the best sources of the celebrated Omega-3 fatty acids, which can help prevent heart attacks. Studies have also shown that Omega-3 may have the ability to offset depression, as well as protect against inflammatory diseases such as arthritis. "I try to eat salmon twice a week, as do my kids," says nutritionist Rosie Schwartz, author of The Enlightened Eater's Whole Foods Guide.
Concerned about recent reports of high PCB levels in farmed salmon? Click here to read a recent article from Health Canada's website.

8. Soy
Protein is one of the nutrients that most women don't get enough of — they should have a protein-rich food every three to four hours during the day to keep energized, says dietitian Linda Barton. "Soy is perfect since it's a plant-based protein that's low in saturated fat." Soybeans and soy protein products, including tofu, miso, tempeh and soy drinks, also contain phytoestrogens that may slow the growth of some cancers, lower cholesterol and offer some protection against osteoporosis. Visit the Soyfoods Association of North America for more information and recipes.

9. Spinach
When asked to name one of her favourite super foods, Toronto registered dietician Leslie Beck praises spinach. It's loaded with energy-promoting iron and folate, a B vitamin that prevents neural-tube defects in the fetus. It is also important in red blood cell formation, protein metabolism, growth and cell division. The leafy green is also one of the best sources of lutein, an antioxidant that benefits eye, skin and cardiovascular health. For more information on the health benefits of spinach, visit Wholehealthmd.com.

10. Tomatoes
Research has found that tomatoes, especially cooked or processed ones, can lower the risk of some cancers and heart disease. Experts attribute this to lycopene, a potent antioxidant and the pigment that makes tomatoes red. A Harvard University study found that men who regularly ate tomato-based foods had lower rates of prostate cancer.
"We love tomatoes," says Diane Clement, who founded the popular Tomato Fresh Food Cafe in Vancouver. She and her husband, Dr. Doug Clement (both former Olympic athletes), start their evening meal with their favourite tomato and bocconcini cheese salad. "The juicy tomatoes, loaded with lycopenes galore, are the perfect healthy jumpstart for any BODY," she says. For more nutrition facts and recipes, visit California Tomatoes.

* Note: Now that you're savvy to the health-promoting foods you should be eating regularly, start collecting tasty recipes that feature them, then combine them in your own digital recipe book.

Updated January 2006

Not every suggestion will apply to thal, but use whatever methods you can to boost his immune system and to raise his Hb level before deciding on a splenectomy. There is no going back once it's done and unless it is giving serious problems, the spleen is usually best left alone.
Title: Re: advice on spleenectomy
Post by: Manal on November 03, 2007, 12:33:04 AM
Hi Puja

I am completly against splenectomy -though i am not a doctor-  because i don't think his spleen is that enlarged. I think you should try every possible HB inducers in addition to the hydrea especially the resveratrol. By the way i have just known from a friend giving her NON transfused kid the reveratrol and had increased the F HB of her 2 years kid from 20% to 30%.

but my concern is that, you mentioned that you have been on hydrea since 2002, don't you think a Hb of 7.5 on hydrea is still low ? What is the opinion of the hema, is that the maximum the hydra can do


Manal
Title: Re: advice on spleenectomy
Post by: poo gill on November 04, 2007, 12:31:19 PM
Hi Manal

Sorry forgot to mentione Prat's ferritin is 150 at the moment. It has incereased form 100 to 125 to 150 in last  3 to 4 years.

Also i would like to get your advice on how to take Recomoron. As I will suggest to my Doctor.

Pls advise on L carnitine, and how to take it as well.

Thanks

Puja


Title: Re: advice on spleenectomy
Post by: poo gill on November 04, 2007, 12:45:04 PM
Dear All

Thanks for ur advice. I am going to listen to your advice and defer spleenectomy for a while.  As I am not convinced yet aboutit myself.


I am considering to try Recomoron and L Carnitine as suggested. Pls advice the procedure so that i can discuss with my docotr. i hv spoken to him and he wil like to know the  procedure as well as how is it give. Cos where Prat is being followed up they donot hv much expereince abt it. So do guuide me the procedure , side effects if any.

Pls suggest wether L Carnitine and Reservatol. Is it available in India easily.

Thanks

Puja

 
Title: Re: advice on spleenectomy
Post by: Manal on November 04, 2007, 12:50:15 PM
Hi Puja

Concerning Recomoron, i have no idea cause i don't use it .

Concerning L-carnitine, Ahmad is taking it from the first day he was diagnoised. First he took it twice daily for a month then twice daily 6 days/week and then finally he is taking it twice daily 5 days in a week. They are in the form of drops and the dose is one full dropper.
L-carnitine is a natural substance that is originally found in the human cells and it has no side effect at all except that the child can be a little more active . It can be taken with hydrea

Manal
Title: Re: advice on spleenectomy
Post by: Shikha Mitra on November 04, 2007, 06:45:32 PM
Hi Puja
Sorry I read this thread late.. and I was aware of your sons condition.
If he is Thal inter.. dont you think the Hb maintained is still low? Will not such a low Hb hamper his growth?
Regarding splenectomy.. well.. I dont think 4 cms is going to cause a problem yet.. and once an Organ is taken out, it cannot be replced. So unless the docs are sure it must not be removed.
But yes, DR. weatherall had once told me that, if the spleen is removed early, then Thal inter and even Thal E could live without blood transfusions.. because they can then settle down to a low Hb.. but then they might not be that active etc.
Why dont you start transfusions for your son? If his Hb is low, then dont you think.. transfuions time to time to maintain a proper Hb would help him?
All the new medicines are not proved yet.. they are all in experimental stages.. so why not go the conventional way?

Shikha
Title: Re: advice on spleenectomy
Post by: poo gill on November 05, 2007, 07:29:44 AM
Hello To All

Manal - Thanks for the advice on L Carnitine. i think I will also try it.  Do u hv any idea then who is using Recomoron, and whom shud I talk to it about. I will discuss it with Priya but if there were more people, atleast we can understand the drug better, Form wht i discussed with prat's Haemo, it has been used much in that  hospital on thal patients. So no feedback  on it so far. When was Ahmad diagnosed9 I mean how many years back).

Manal / Priya / - As we are all on hydrea, I want to know if Doc's hv said  how long can we use hydrea, can we just go on and on or is there a safe time to stop. Prathas been on it for 4 years.

 I am confused why doc is going the Spleen ectomy way - wether it is to stop hydrea  totally.???? cos his spllen is still not so enlarged tht it could be a cause of concern. Alternatively, maybe the low hb must be worrying. i cannot understand.

Shikha - hi , Prat 's 7.5 was able to maintain his normal height n weight, therefore Doc was maintaining him on hydrea. But this year the hb has fallen to bleow 6.66 and 5.8 and he got 2 transfusions.  looks  as if it is due to viral infection. Cos his WBC also had gone way below the danger level's so we had to stop hydrea. He has been resumed on Hydrea but lets see, next test is on  Nov 15. Hopefully we can come up with some good results.

Thanks to all.

Puja
Title: Re: advice on spleenectomy
Post by: Manal on November 05, 2007, 11:51:29 AM
Hi Puj

Ahmad was diagnoised on July 10th, 2006 and according to my hema, hydrea will be taken forever as long as the liver and kidney functions are normal and the WBCs count are in the safe range.

Here in Egypt, there is someone i heard about him from my hema who has been on hydra for 18 years.

Actually, i don't know anyone who is taking the Recomoron

Manal
Title: Re: advice on spleenectomy
Post by: priya on November 05, 2007, 10:50:34 PM
Hi Puja

Priya started taking hydrea from jan 06, but she was taking (one capsule daily) hydrea for 2 months and then one month rest. but from aug 07 she has stared regularly.

 how long time you can take it? Its true as Manal Said.

Take care

Dimple
Title: Re: advice on spleenectomy
Post by: poo gill on November 06, 2007, 02:37:56 AM
Dear manal

Actually I also thought so , tht Hydrea can be taken endlessly. However with Prat's viral infection , the wbc fell down and we still continued him on hydrea as we were not aware of the WBC  level. When we checked witht the hema, he told us to stop Hydrea. I feel he was worried tht Hydrea is brinigng down his Wbc as it is a side effect of  hydrea. However my opinion is tht it was the viral which brought it down. For 3 weeks his Hydre was stopped and has been restarted. now we are awaiting the CBC on nov 15 to kow further. We hv been not advised to do  liver function or kidney function test so far. i am thinking of getting it done. Could you let me know what am I ssuppose to look out in these tests. I think Hydrea can be taken long term as told to me by my Hema.

Dear dimple - Regarding recomoron, pls advise how is it taken. Is it given as per the weight of the kids. Did u get in touch with anybody else who is giving it so far.

Dear Andy -  Do u know any more members' whom I can talk to regarding Recomoron.

Thanks

Puja
Title: Re: advice on spleenectomy
Post by: Manal on November 06, 2007, 11:43:29 AM
Dear Puja

My hema. requested the kidney and liver function + CBC every month until she makes sure that the body is tolerating the hydra, then she told me that the liver and kidney functions will be done every 3 months and then every 6 months as long as he is on hydrea.

 General Kidney functions include: Blood urea, serum creatinine
 General liver functions include: Bilirubin (total/direct), SGOT(AST), SGPT(ALT)
There is also alkaline Phosphatase, but i am not sure which function it belongs

According to the hema, if your WBCs dropped constantly under 3,500 hydrea should be stopped

Manal
Title: Re: advice on spleenectomy
Post by: priya on November 06, 2007, 04:42:12 PM
Hi Puja

Pls. check the following link.
http://www.thalassemiapatientsandfriends.com/index.php?topic=1255.15

I really dont know if anybody else in this forum is taking Recormon.
It is given according to the body requirment. I dont know whether is has do anything with weight.
but pls. give a call to Dr. V.P.Choudhry. I think he will be quite helpfull. When i was in India I talked to Dr. Methew(pediatric Hemo.) from CMC Vellor and she told me that Dr.V.P.Choudhry is one of the senoir most Hemotologist in India.So, Pls. Give him one call.

Pls. Let me know further devlopment of  Part.

Take care

Dimple.
Title: Re: advice on spleenectomy
Post by: poo gill on November 07, 2007, 06:49:14 AM
Hye Dimple

I just spoke to Dr Chowdhry, I must say he is a very nice person and gave me a lot of time. he says we should run some tests. Do u remebr wht tests did he run on Priya.

Can u give me a break up of all the tests, he mentioned something on the liver function and EPU. I dint understand wht is EPU and then he said somehting abt renal function. Can u tell me more about it.

looking forward to your reply.

Puja

Title: Re: advice on spleenectomy
Post by: priya on November 07, 2007, 06:04:43 PM
Hi Puja

I am gald that you talked to Dr. Choudhry.
For Priya, Dr. Choudhry asked us to do LFT (liver functioning test),CBC and Serrum Feritine test. we didn´t do any kindney test. And regarding EPU I dont know what it is. ???

Hey Manal, Do you have any idea what is this EPU test or anybody else know about this.
Pls. let us Know.

Take Care

Dimple.
Title: Re: advice on spleenectomy
Post by: Manal on November 07, 2007, 09:23:39 PM
I am sorry i have no idea :dunno

Manal
Title: Re: advice on spleenectomy
Post by: Andy Battaglia on November 07, 2007, 10:31:47 PM
Puja,

I don't know anyone who has taken any of the EPO drugs other than my employee who was given Procrit after chemo. He said his blood count did rise but he doesn't know if it was the Procrit or just the normal restoration of his blood after chemo. He did experience an unpleasant sensation that he described as feeling like he was swimming in blood.

EPO drugs do work with hydroxy in some patients to increase blood production. From http://www.annalsnyas.org/cgi/content/abstract/850/1/129

Quote
The results show an additive effect of the two drugs, in some of the patients.

If other methods do not increase his Hb, it should be considered before splenectomy.
Title: Re: advice on spleenectomy
Post by: Andy Battaglia on November 07, 2007, 10:38:00 PM
I just want to add that Dr Choudhry is well known in India and has worked with thals for decades. I met him at the Dubai conference and he is a truly dedicated doctor who understands the many complexities of thal care and that we are far from where we need to be in terms of providing the necessary help to thals around the world.

I do not know what EPU refers to as it is an abbreviation for many things.
Title: Re: advice on spleenectomy
Post by: poo gill on November 12, 2007, 04:41:21 AM
Hey All

Sorry no posts' lately cos was busy with diwali.

Manal - I had gone to buy L catnitine but  the pharmacy lady here said tht L carnitine here is used for loosing weight n stuff. Also Body builders use it. I dnt know wehter it is true. However the bottle which they had said tht for loosing weight. Could you give me a reliable source where i can buy it from. I am in S'pore, so if u could advise me a brand which is readily available.

Prat is going for his CBC test tomm, along with Liver functin test n Kidney. Hopefully if everythign is ok, then we can start Recormon for him.

Will update you on the results as soon as I hv them.

Tk care

Puja
Title: Re: advice on spleenectomy
Post by: Zaini on November 12, 2007, 11:21:34 AM
HAPPY DIWALEE PUJA AND DIMPLE    :biggrin

ZAINI.
Title: Re: advice on spleenectomy
Post by: priya on November 12, 2007, 06:25:40 PM
Thanks Zaini  :hugfriend

HAPPY DIWALI PUJA

Best of luck,Puja.I will pray for Part,Hope every things come OK in his test.

Dimple
Title: Re: advice on spleenectomy
Post by: poo gill on November 13, 2007, 03:06:40 AM
Thanks Zaini for your gretings!

Thanks Dimple, will keep you posted on the results.

Luv

Puja
Title: Re: advice on spleenectomy
Post by: Manal on November 13, 2007, 10:17:17 PM
Hi Puja

Happy Diwali and sorry  for the delayed reply

I don't know if it L-carnitine helps in losing weight or not, but it is true that it is used in body building as it helps in improving the athletic performance. Actually i don't know who sell it in Singapore as i use one that is made locally by MEPACO http://www.mepaco-pharma.net/html/Get-trades.asp
The syrup i use has a dropper and i give Ahmad one full dropper twice a day 5 days/week. The full dropper is 1ml and it contains 300mg L-Carnitine and the following is written in the phamphelet of the L- Carnitine

Indications:
1-Primary L-Carnitine deficiency myopathic systemic progressive cardiomyopathy
2-Secondary Carnitine deficiency due to genetically determined disorders: acidurea and disorders of beta oxidation
*Secondary Carnitine deficiency due to aquired conditions: heamodialysis and renal fancony syndrome
3-Myocardial infarction L-carnitine decreases the infract size, L-carnitine has a cardio protective effect
4-Low birth weight infants
5-Haemolytic anaemia (Thalassemia & Sickle cell anemia )
6-Improve atheletic performance
7- During treatment with anticonvulsant drugs ''sodium valpoate''
8- During treatment with Pivampicillin
9- During antineoplastic therapy ( Anthracycline )
10- Full term infants receiving soya based infant formula
11- Long standing leg ulcers
12-Idiopathic asthenozoospermia

So as you see there are many things L-carnitine is used for

Let me know if you have any question

Manal
Title: Re: advice on spleenectomy
Post by: poo gill on November 14, 2007, 01:46:50 AM
Thanks Manal  for taking ot so much of ur time and typing everythign for me in details, I really appreciate it. 

I am going to ask Pratr's Hema to let me know wether it is available in India. Will Keep you posted.

His results are due today,  will know future course of action from the results i guess.
Tk care

Puja
Title: Re: advice on spleenectomy
Post by: KHALIFA on November 14, 2007, 02:37:15 AM
Andy said
(I do not know what EPU refers to as it is an abbreviation for many things)
      I said: we have in the aviation ABU (AUXULARY POWER UNITE)  we use it in the airplane
                                     khalifa 
                             state of kuwait
                      one for all and all for one
Title: Re: advice on spleenectomy
Post by: §ãJ¡Ð ساجد on November 14, 2007, 06:32:51 AM
What does airplanes got to do with Thalassemai?!? :crackup
Title: Re: advice on spleenectomy
Post by: KHALIFA on November 14, 2007, 11:33:24 PM
 :rotfl :nana :crackup :thumbsup  good quistion Sajid  :biggrin but that what is jump to my mind when i saw Andy answer LOL
                                                          khalifa
                                                  state of kuwait
                                             one for all and all for one
Title: Re: advice on spleenectomy
Post by: poo gill on November 16, 2007, 09:17:37 AM
Hello to all

A quick update on Prat. Good news is his hb has gone up from 5.5(oct 23, 2007) to 6.3(Nov 14, 2007) with restarting of hydrea in 3 weeks. his WBC's n Platelets are normal. AS the Liver function test and Kidney function tests' are normal, Hema is startting the Recoromon 5000 iu weekly every friday. Another CBC is due next friday.

AS of now he has said donot start L carnitine and reservatol cos he says we wil go one at a time. Hema is not interested in starting everythign together.

Thanks

Puja

PS; Manal I  owe u an explaination on XML polymorphism and Hydrea, will  get prat's file and give u the related information soon. I need to go thru his papers' as the test was sdone 5 years back and i am a bit rusty. Dont want to give u wrong information hence the delay.

Title: Re: advice on spleenectomy
Post by: priya on November 16, 2007, 08:10:31 PM
Hi Puja

I am really HAPPY for Part. :hugfriend
GOD bless him. I am sure that comb of Hydrea & Recormon will help Part as it has helped Priya.
It has been more than 2 and half Yrs. that I have not seen Priya´s HB raised to 8.8.
THANKS TO GOD.

BEST OF LUCK.

Luv

Dimple.



Title: Re: advice on spleenectomy
Post by: KHALIFA on November 16, 2007, 10:46:20 PM
   OK ....   you wait you get good news GOD blees Part i wish for him long long healthy life
               :wub :happyyes :cheer :yahoo :) :boogie :heartred :clap :veil :winky :flowers :thumbsup :getwell :blowkiss :love :sorrow :bigparty :yay :wootwoot
 
 
                                                khalifa
                                          state of kuwait
                                    one for all and all for one
     
Title: Re: advice on spleenectomy
Post by: Manal on November 17, 2007, 01:28:08 AM
Congratulations Puja, keep i up :hugfriend

Manal

Title: Re: advice on spleenectomy
Post by: Andy Battaglia on November 17, 2007, 03:46:01 AM
Hi Puja,

It's good to hear that Prat is returning to normal. Now that the effects of the infection have passed, his Hb should rise to his regular level. Hopefully, this will eliminate any talk of splenectomy for now. I did a bit of reading about the combination use of Recoromon and hydroxyurea in thal intermedias and it does result in a higher Hb than using hydroxy only.



Sorry I missed you on MSN. I still am having ongoing sinus infections and have been falling asleep a lot earlier than normal for me.
Title: Re: advice on spleenectomy
Post by: poo gill on November 17, 2007, 04:08:16 AM
Thanks Khalifa for your prayers -  it has really helped - I forgot to mention that I really liked your post on EPU on Airplanes. ONCE A PILOT ALWAYS A PILOT.

Thanks Dimple -  itis because of you I had got to know about recormon. All thanks to you. Just praying now it works.

Thanks Andy -Please get well soon, we really need you and cant afford to hv u fall sick. Dont worry abt msn,  the time difference in S'pore and US is too much. When you come online I am leaving the office.

Thanks Manal - i hv got L carnitine drops in india as well but hema is saying to wait. So we r waiting. Next i m posting the details of Polymorphism.
Title: Re: advice on spleenectomy
Post by: §ãJ¡Ð ساجد on November 17, 2007, 07:07:17 AM
Great news Puja!

Wishing you all the best for the future!
Title: Re: advice on spleenectomy
Post by: poo gill on November 17, 2007, 10:50:36 AM
Thanks Sajid

how are u doing?

Btw u were telling me to chk something in S'pore from the SGH. Can u tell me again . i ll get it organized.

thanks

puja
Title: Re: advice on spleenectomy
Post by: §ãJ¡Ð ساجد on November 17, 2007, 11:46:31 AM
Really!? I did? :huh

All I know about SGH is that they excelled in Cord Blood transplant and their reply to my email which I had posted here:

http://www.thalassemiapatientsandfriends.com/index.php?topic=127.msg615#msg615
Title: Re: advice on spleenectomy
Post by: priya on November 20, 2007, 06:53:59 PM
Thanks to Lisa, Mr. Andy and Danielle because of them we have this great site where we can communicate, share our knowledge, and experience with can each other.

It’s my pleasure.

Best of Luck  :hugfriend

Dimple
Title: Re: advice on spleenectomy
Post by: poo gill on December 03, 2007, 06:55:56 AM
hello to all

Wanted to share some good news. Prat's Hb came out today. It was 7.53.  He has mtaken 3 doses of recormon so far.

tk care

Puja

Title: Re: advice on spleenectomy
Post by: Zaini on December 03, 2007, 12:52:25 PM
That's great Puja,

Wish you the best  :hugfriend

ZAINI.
Title: Re: advice on spleenectomy
Post by: poo gill on December 04, 2007, 04:56:15 AM
Thanks Zaini, he is coming to singapore for his winter vacation. Hope he stays well n healthy here.

Luv Puja
Title: Re: advice on spleenectomy
Post by: priya on December 07, 2007, 06:31:00 PM
I am ver happy for Part . :hugfriend

Best of luck.

Love

Dimple
Title: Re: advice on spleenectomy
Post by: §ãJ¡Ð ساجد on December 08, 2007, 07:57:37 AM
Wishing you all the best :thumbsup

Enjoy your vacations.
Title: Re: advice on spleenectomy
Post by: poo gill on December 20, 2007, 11:13:48 AM
Hey everyone

Sorry for the delay in posting. have been really busy as Prat is in S'pore for his winter vacations and I am totally tied up with him. he has so far got 4 shots of Recormon. His hb had gone to 7.5 then it has come down to 7.1 and now in S'pore 6.9.

Wanted to let you know my brush with a S'porean doc yday, :

I had taken him to the doc yday in S'pore they refused to prescribe him recormon and in S'pore no injection can be procured without prescription. She started with insulting inidan docs and how in Spore people come all over the world to get  treatment. She said  " people come even from US, to get treated". Anyways I could not take it anymore and I also gave her apiece of my mind and told her that if not  for  singaporean docs tht my son would have been well. He was born in s'pore and was not diagnosed for 2.5 years even when he was symptomatic. A doc from India had one look at him and knew he was a thal kid, so dont give me a lecture on wht S'pore docs are. Then she knew tht she has touched the wrong cord and said no no , this injection is against S'pore regime and stuff etc etc, so i cant give. We donot treat thal patients like this etc etc. Then I asked how do u propose treating him, by giving him transfusions.She said this is not the treament we  give to thal intermedia, she said he is ok on 6 hb and I shud not worry on his hb wihich is 6. I said wht abt his growth ? She said do u want to make him a sports person , why r u bothered abt growth n stuff. Thal intermedia live a normal life span. I am amazed at the calibre of Doc's in S'pore and how can they even say such things. She said u shd conitnue on Hydor oxy urea and he shud maintain his hb aroung 6 or 7. Then I asked that 3 years back i was told tht  hydro oxy urea was against ur  s'pore regime, now u r saying u can give. Wht are u trying to say here ?   Her point is tht she wud not give hydro oxy urea to any of her relatives or his son, cos one of the possibilty is tht it can cause cancer. So they dont give hydrea as it an cause cancer,  however I can still continue but she cannot prescribe recormon in any case. According to her  thal kids the rbc's r faulty or defective and recormon is just stimulating the boody to produce more defective rbc's .

After arguing a lot I knew it was a lost cause and came back home. Frustrated beyond belief.
Title: Re: advice on spleenectomy
Post by: Andy Battaglia on December 20, 2007, 04:53:29 PM
It is those small defective cells that are keeping Prat alive. Yes, there are not as many as there should be and they are not as effective as they should be, but there are enough and of good enough quality to make Prat an intermedia rather than a major. What don't doctors understand about this? Increasing the amount of these red blood cells means higher Hb and more oxygen to the cells. I have heard some doctors make the same claim about folic acid, yet the vast majority of thal doctors prescribe folic acid as the very first thing in thal treatment.

Title: Re: advice on spleenectomy
Post by: poo gill on December 27, 2007, 07:22:02 AM
Thanks Andy for your constant support!.

Today is a very special  day, it is my  daughter varrya's bday as she turns 4 today. Also Prathhit is in S'pore for his vacations and i am celebrating his bday also today(his actual bday is on jan 27). He will turn 8 on jan 27th.

Luv

puja

Title: Re: advice on spleenectomy
Post by: Andy Battaglia on December 27, 2007, 03:38:38 PM
:party Happy Birthday Varrya!!!!!!!  :party




 :bigparty    :party :party :party :party :party    :bigparty
Title: Re: advice on spleenectomy
Post by: Zaini on December 28, 2007, 01:04:55 PM
Hi Puja,

Say happy birthday to Varraya and Prat from Zainab and Hasan  :hugfriend :hugfriend

ZAINI.
Title: Re: advice on spleenectomy
Post by: §ãJ¡Ð ساجد on December 29, 2007, 07:46:47 AM
:party Happy Belated Birthday Varraya and Prat :party  
Title: Re: advice on spleenectomy
Post by: poo gill on January 05, 2008, 08:23:57 AM
Hi to all

Thanks for the blessings and good wishes. Bday was very well, they both enjoyed.
however prat is down with throat infection now, and is looking again a bit pale. His doc in India is saying tht recormon not working and we shud still consider spleenectomy.doses


What should I do?

Pls advise.

Dimple - how long has priya been on Recormon , Prat has taken only 6 doses of recormon.
Thanks

Puja
Title: Re: advice on spleenectomy
Post by: priya on January 13, 2008, 07:35:09 PM
Hi Puja

Sorry for delay.

Priya is taking Recormon from mid of aug 07. I thing she had total 20 shots of recormon.
but let me tell you that she had throat infection in dec. due to which her Hb count had gone down to 7.5. Now her another CBC is due on next week. ANd i will let you know how she is doing.

Take Care and Best wishes for Part.

Dimple
Title: Re: advice on spleenectomy
Post by: poo gill on January 14, 2008, 10:42:07 AM
Hi dimple
happy new Year !. Prat has left to India on Jan 11, so I hv time now to update my posts again.

prat also had a throat infection recently here in S'pore and looks like his hb must hv gone down cos here. We will be getting a CBC done fpor him this week. He has total 8 shotys of recormon. my mum and I feel tht the injection is working but he has been just so sick this past year that he has not been able to stabilize. Dr marwaha has not seen him since a month and will let us know the clinicla diagnoses once he sees him. Lets see wht he says.

Rgds

Puja

Title: Re: advice on spleenectomy
Post by: priya on January 17, 2008, 12:40:28 AM
Best of Luck Puja  :hugfriend

Love

Dimple

Title: Re: advice on spleenectomy
Post by: amrit_sembhi on January 30, 2008, 10:13:09 AM
Dear All,

Kiindly allow me to join on board. I am a new on this site, which is truely great forum.I have greatly enriched by your knowledge and experience.IThank God that such thing exists!

I have gone through the entire coress.on the subject intiated by Puja-thanks to you for this -and to all others for chipping in with respective experiences.

I have been contemplating on spleenectomy as advised by my hema Dr. R.K.Marwaha for last 7 years and I have not been able to figure it out conclusively for lack of knowledge and fear that once lost it is permanent one.

Let me introduce my case.

I have two children who are Thal Intermedia as diagonised at PGI, Chandigarh, India. My 13 year old daughter, Milan, was normal till she turned of age 5  and  was diagonised as stated. She was started on Hydrea but Hb didnot go beyond 5.5 and  had to be put on regular blood transfusion(BT) since year 2000. Last year I requested doc to try hydrea again. But after trying in vain for 3 months she had to be put back on transfusions with again advice to go for spleenectomy as her BT interval is coming down to 15 days from 21 days, which was earlier. Last BT was done on  28th Jan 2008 and her Hb was 7.3.

As I had understood Thal. Intermedia can survive without BTs but mine has become major case. So, Please advice whether shall I adminster Resveratol/L-Carnitine/Recormon and what r the sources available in India or shall i go for spleenectomy

My son, Amiteshwar,who turns 8 this september, was diagonised as mild intermedia  and is on Hydrea from the beginning and Hb. has been hovering between 6 and 7.Will the above combinations help in his case, as well.

Looking forward to your response.

Best regards.

Amrit Sembhi
Title: Re: advice on spleenectomy
Post by: priya on January 30, 2008, 07:43:27 PM
Hi Amrit

WELCOME to the forum.

I am really sorry to know that your both children are thal intermediate.
Regarding you daughter I don’t think that we can give her on Hydrea because she had more than 7 yrs being on BT. But we have one member Zaini her daughter is also thal intermediate and she is on regular BT may be She or Mr. Andy can guide you best.

Regarding your son i think so should wait for spleenectomy and try Recormon which is easily available in India by Germen company Roche or even by Renbaxy. And I am sure you can get L-canitine but I don’t know in which form.

About Revestrol you can check following link

http://www.thalassemiapatientsandfriends.com/index.php?topic=589.0

And you can also check the topic under heading "Working toward cure" for more information.

Take care

Dimple.
Title: Re: advice on spleenectomy
Post by: Andy Battaglia on January 31, 2008, 03:57:27 AM
Hi Amrit,

Is your son's spleen enlarged?
Title: Re: advice on spleenectomy
Post by: amrit_sembhi on January 31, 2008, 04:38:58 AM
Hi Dimple and Andy,

Thanks for your quick response.

Dimple, I will go thru info as you have directed. Are there any side effects of these medicines.
Yes, my both younger kids are thals. thats the challenge you got to accept. and as Andy eptly says Lets give thals the Chance. By the time we came to detect thal. in daughter & know about the disorder my wife was in advance stage of preganancy and we could not do  prenatal tests etc. Eldest daughter was tested subsequently and is fortunately career only.

Andy, till now, I have not been told about the spleen enlargement nor spleenectomy in the case of my son. May be I will ask the doctor in the next visit in two months.

Best Regards.

Amrit
Title: Re: advice on spleenectomy
Post by: §ãJ¡Ð ساجد on January 31, 2008, 07:34:07 AM
Hi,

:welcome to the site Amrit!

The quick recommendation of splenectomy by doctors worries me too. I wonder what makes them so keen to go for it?

Amrit, are your children's spleen malfunctioning too much? What are their other blood counts besides Hb.

If their WBCs and Platelets are too low then splenectomy can help improve these counts along Hb, if not, then something else could be wrong like the Bone Marrow is giving up as your children are now becoming transfusion dependant.
Title: Re: advice on spleenectomy
Post by: Andy Battaglia on February 02, 2008, 09:03:58 PM
Splenectomy has long been a main treatment for thal intermedia because in many patients, once the spleen is removed, the destruction of red blood cells slows enough that the patients either need less frequent transfusions or no longer need transfusions at all. However, there is no way to predict if this will happen with a specific patient and some who stop transfusing will later need to resume taking blood.

I feel that the health of the spleen should be a big factor in the decision to have a splenectomy. If the patient's spleen is significantly enlarged, I feel it makes much more sense, as the enlargement is dangerous and also evidence that too many red cells are being destroyed. Many patients have improvements in health once their spleen is removed but it is a final decision as there is no putting it back once it's removed, so you must feel very sure that it is the right thing to do.

In this case, a highly respected thal doctor has recommended splenectomy. Since Dr. R.K. Marwaha, who has been a leader in using wheatgrass to raise fetal hemoglobin levels in patients, has recommended splenectomy, I would give it very serious consideration. I do not feel that Dr Marwaha would suggest this unless he felt other methods of raising hemoglobin don't offer much hope of success in raising your daughter's Hb.