Should I put Portacath or PICC?

Hi everyone !
This is Simran here from Pune. I am a Thal major, 29 yrs of age. I am currently in a dilemna as my ferritin is high and just oral chelator is not working on me. Desferal has to be administered. Currently I am takinf 4-5 days a week of subcutaneous desferal and also Asunra on a daily basis.
I have put PICC line twice in the past and it has helped but my ferritin has gone up because I tried to take on Asunra,
I am planning to go on intensive chelation - but should I put PICC line or should I put portacath. Which one of these two should I consider?
PICC line is more external and I have pulled it off for 6 months last time, and portacath is under the skin but involves surgery and a scar which I am scared of.
Pls guide based on your experience with Portacath or PICC.
Hoping to take a decision based on your experiences.
Andy - Would love to know your take too !
Ferritin level - 9000ng/ml

Hello, how high is your ferritin? Have you considered combined therapy with the two oral agents?
I'm taking Exjade (asunra) and Ferriprox daily since 15 months and it works great. This combination is not very popular up to now but it's very effective.

Yeah it's me again 
I'm sorry I've missed your ferritin at the bottom of the post. 9000!
Well it's very high but I think you know already. 23 years ago I had a port-a -cath and it saved my life!!! I dropped down within a year from 7.300 to 800 so I can say that it is a good idea.

Hi Simran,

The problem is that it takes a full two years of intensive chelation to remove the iron from the organs, especially the heart. So, whatever plan you make should take into account that you will have to fully comply with this intensive chelation for that period. You're experienced with the picc line. Do you feel that if had been continued for two years that it would have solved the problem? You've also taken oral chelators. Do you feel they both are somewhat effective? A port will make it possible to take desferal 24/7 for as long as you want, but a port does have some drawbacks, including the surgery you mentioned. So, you need to weigh your prior experience and compare how different approaches have worked.

Nomad brought up a possibility you haven't considered, two oral chelators. The doctors in the US who have used this method say it's just as effective as desferal and an oral chelator. Would it be a possibility for you that you take full daily doses of both Asunra and Kelfer? Do they agree with you enough to try it? Your history does justify a different approach, and I wonder if it might be the method that would work for you, since desferal seems to not do enough. Whichever approach you choose, be ready to stay with it for at least two years (unless of course, the choice proves inadequate), so think about what you feel would work best for you in terms of full compliance. Some find a port does that for them, but if oral chelators suit you, it might be the best approach for a long term plan, as long as you have white cells and liver function checked regularly. It's going to take two chelators, so make a judgment based on your experience and go intensive.

Hi Andy and Nomad
I have tried Kelfer and it does not suit me. I get severe joint pains. So, I cant take Asunra with Kelfer. Another thing is, PICC cant be kept for 2 years as it can max be stretched to 6 months max. as it is external and not concealed.
2 of my doctors are not recommending port as it is invasive and also has infection risk. and 1 doctor says go in for Port. Hence I am confused. Also, I am going to be getting married end of the year. So getting a surgery and the scar with Port, was one of my concerns too.

@Nomad - How would you take desferal while on Port - Balloon pump, regular pump or Saline?

Simran, I took the desferal with normal pump 24/7. You right about infection, the risk is high and me myself, I had 2 infections within a year and on the 3rd we decided to take it out. Besides, my ferritin dropped to 800.
Speaking of joint pain, this is a common problem with Ferriprox but it disappears after a while if you continue taking it. If necessary along with ibuprofen. I can't make a decision for you, it's up to you but if I where you I would give it a try... As for life quality combined therapy is better than the whole procedures for a port.
Keep us updated. If you need anything let me know. Take care.

Nomad,

I would like to echo what Andy is saying.  Using two chelators is the best, and sometimes the only way to chelate very high iron levels.  Desferal and exjade work very well together.  Exjade is a power house removing iron from your organs - and desferal is very effective at removing it from your blood stream.  You will have huge gains removing iron from your organs if you use them together.  You will need to be on a strict regiment and you will need to be very compliant but it is possible.  Many others on this forum have achieved chelation of heavy iron overload.  

Of course you should be monitored closely by your physician while on this regiment - as should anyone chelating with exjade.  If your physician is not aware of combination chelation - present him with research done at the comprehensive centres in North America (if he or she is not aware of such studies).

We're hear to support and offer advice.  

Sharmin

Hi Simran,

The problem is that it takes a full two years of intensive chelation to remove the iron from the organs, especially the heart. So, whatever plan you make should take into account that you will have to fully comply with this intensive chelation for that period. You're experienced with the picc line. Do you feel that if had been continued for two years that it would have solved the problem? You've also taken oral chelators. Do you feel they both are somewhat effective? A port will make it possible to take desferal 24/7 for as long as you want, but a port does have some drawbacks, including the surgery you mentioned. So, you need to weigh your prior experience and compare how different approaches have worked.

Nomad brought up a possibility you haven't considered, two oral chelators. The doctors in the US who have used this method say it's just as effective as desferal and an oral chelator. Would it be a possibility for you that you take full daily doses of both Asunra and Kelfer? Do they agree with you enough to try it? Your history does justify a different approach, and I wonder if it might be the method that would work for you, since desferal seems to not do enough. Whichever approach you choose, be ready to stay with it for at least two years (unless of course, the choice proves inadequate), so think about what you feel would work best for you in terms of full compliance. Some find a port does that for them, but if oral chelators suit you, it might be the best approach for a long term plan, as long as you have white cells and liver function checked regularly. It's going to take two chelators, so make a judgment based on your experience and go intensive.

On tuesday in a seminar, A mumbai based Clinical hematologist told us that

NOW
 the first line of treatment for iron chelation is Deferasirox ( Asunra/defrijet/desirox)
if it prove inadequate/ineffective then
 the second line of treatment for iron chelation is adding Kelfer (L1/ deferiprone) with Deferasirox.

So, Combination of both the oral chelators is the future of Iron chelation treatment.

Hi Andy and Nomad
I have tried Kelfer and it does not suit me. I get severe joint pains. So, I cant take Asunra with Kelfer. Another thing is, PICC cant be kept for 2 years as it can max be stretched to 6 months max. as it is external and not concealed.
2 of my doctors are not recommending port as it is invasive and also has infection risk. and 1 doctor says go in for Port. Hence I am confused. Also, I am going to be getting married end of the year. So getting a surgery and the scar with Port, was one of my concerns too.

@Nomad - How would you take desferal while on Port - Balloon pump, regular pump or Saline?

the problem with kelfer is that doctors starts it with daily and @ 50mg/kg dosage as it is the protocol since so long, which mostly lead to joint pain.

starting in low dosage or 2-3 days a week can help to overcome joint problems.

Simran, if the joint pain can't be controlled with the use of an analgesic like ibuprofen, then kelfer isn't for you. You could perhaps take a lower dose along with another chelator once your iron is under control, but for aggressive chelation, you most likely will have to use desferal and Asunra. You should take a full dose of Asunra daily. Splitting the dose into two works best and provides better chelation (this is a proven fact). Considering your current circumstances, I would say for now, go back to the picc line for 6 months and keep the desferal flowing 24/7, along with your full dose of Asunra. Be 100% compliant with both chelators.