B CLPD,group,new entrant.

[haiderimam]

hi haider imam,jamshedpur,india,final BCLPD,fish shows17pdeletion,dr.sayTP53with17pdeletionBCLPD treatment option is limited,ibrutinib in india costly i canrt afford,took ritux ist six month every4wkd,now 8wks,i was treted in2013 chemoCVP R6cycles,general health ok,age 63+,pl advise how long can my health be ok,i dont have any insurance cover ,usual in our scenario,what precautios &supplement advisable for keeping fit.thanks for includi g me in group.

[MrMidnight]

Hi haider imam... I assume you have developed 17p after treatment in 2013? Are there any clinical trials for Ibrutinib in your part of India? What about compassionate access from a drug company? (I am 17p deleted, and am on a clinical trial for a new-generation Ibrutinib here in New Zealand.)

[vinnet]

Haider

I am also in India but dx only 9 months ago with CLL stage0. On wnw. Tried to find a CLL specialist in AIIMS or FORTIS etc. but every oncologist says he is CLL specialist!!

I presume u may be connected somehow with TATA ? Can u find a real CLL specialist in TATA mumbai? We stand to benefit hugely if we can get a second opinion from a CLL specialist.

vinnet

[mag1309 in reply to vinnet]

Try Advani from Mumbai. Just put ' Advani cancer Mumbai ' in Google to get details.

[vinnet in reply to mag1309]

Tried. He is a highly experienced onco, but not CLL specialist.

google.co.in/amp/m.economic...

We badly need to have access to a CLL SPECIALIST.I tried fortis and Medanta in Gurgaon. No luck.

vinnet

[mag1309 in reply to vinnet]

Nitin Sood in Medanta.

Advani has done 1st Bone Marrow transplant in India. Visit his profile, he has done lot of work in CLL side.

jaslokhospital.net/fad.aspx...

[vinnet in reply to mag1309]

I have consulted Nitin Sood. I even asked him about CLL specialist. He said he does not know any CLL specialist.

[mag1309 in reply to vinnet]

I am consulting DR. Manish Singhal - Apollo. He is oncologist but I am happy the way he handle my case. He has many lymphoma cases.

CLL specialist is difficult in India as desease is rarely exist in India.

[Cllcanada Top Poster CURE Hero]

There is a clinical trial for 17p deleted patients, who have had previous treatment at Christian Medical College, Vellore, India, 632004

It is not yet taking patients however, but you should contact them at this email address ... [e-mail]

Reference and more information

clinicaltrials.gov/ct2/show...

~chris

[Spacee]

Hello Haider, welcome. You seem to be knowledgeable about CLL. My husband is 17 deletion also. Diagnosed about 4 months ago. So, I read what posts that I can here. It seems that a mostly vegan diet really helped one person. Especially the spinach and Kale. Eat raw in a salad, the best way. Not sure if you can get those in India. That might help the hemaglobin count. Exercise is mentioned here from time to time. My husband feels best if he can walk in the am. He walks a mile. But doesn't do it everyday. You probably have extremely warm weather as we do here in Florida. So, maybe at the coolest part of the day. The volunteers here are extremely knowledgeable!! And there are articles with info from the doctors here which you can watch or read the transcript. We are still on WnW. My husband will turn 70 in about a month, so he feels if he needs treatment, He just will refuse. We have a bit of money but he wants to leave it to our 3 sons. I guess what I am saying, while we could afford the medication for awhile, soon we would be in the situation you are in. I wish you well, Spacee (Linda)

[MsLockYourPosts Passed Volunteer in reply to Spacee]

Spacee - There are many plans which offer financial support for treatments in the US, including some involving drug companies which offer access directly to patients. I wouldn't let your husband refuse treatment, if it looked beneficial, until you have all of the facts about the potential cost.

[Spacee in reply to MsLockYourPosts]

Thank you pkenn. I saw somewhere this week that someone had paid $5K a month for 2 months and then $700 a month afterwards. If he needs treatment, I hope that is the case for us. He said "that sounds doable". We are lucky to be able to do that much 17 years ago we were 1 month from personal and business bankruptcy! So, thank you for sharing that with me.

[MsLockYourPosts Passed Volunteer in reply to Spacee]

On another site a long list of patients reported that their co pay for Ibrutinib was $10.00 a month. Ask questions both in support groups and of your doctor before making a decision!

[SueTG in reply to Spacee]

Your Physician's office should offer to contact possible programs/providers of drug(s) for compassionate care use. For me, my Oncologist indicated the "p17 deletion" should make a difference in my being approved for Imbruvica. Thankfully, he was correct! In short order I was approved and the drug is being provided at "no cost" to me. WOW! We are far FROM destitute and live a comfortable lifestyle. However, the monthly costs we were quoted $10,000-16,000/month, would have depleted our resources in relatively short order.

(I was diagnosed earlier in the year w/CLL and advised to watch and wait. Labs revealed WBC's doubling rapidly. In June, my labs went totally off the rails, hemoglobin tanked, spleen enlarged to twice normal size. Dr ordered FISH which came back p17- My very competant, compassionate Oncologist moved quickly to get my treatment started. I am 30 days in, hot flashes and fatigue resolved. Spleen back to normal. Still waiting for labs to improve, but advised that is to be expected at this stage. No side effects to report)

Warm and Best Regards

Sue TG (Very Grateful, very hopeful)

[haiderimam]

thank u,last 6months counts r ok,trying balanced diet,share info,wish good health for ur father,

[Spacee]

Thank you too for information on affordable meds. No support groups in our rural area. The doc informed us of the 17p deletion 2 months ago. See him again in a month. I will see if he voluntarily tells us about cost of meds. If not, I will ask. Maybe the Clinic has someone you talk too about such things. The doc seems kind of busy. Thanks again.

Linda (Space)

[SueTG in reply to Spacee]

Maybe this link will help, now or at some point. There is a support & resources option you might find useful.

imbruvicahcp.com/cll

Best,

Sue

[SueTG]

Y

[Spacee]

Wow, thank you so very much Sue!!! What a godsend you are!!

Linda (spacee)