chronic coughing and scaring lesion on lungs of CLL patients

[amaagabg2020]

I finished 6 cycles of R-CVP therapy recommended for my CLL 7 months ago and now scheduled to be put on BR chemoimmunotherapy because of poor response and short remission time. But FISH test of my blood shows i am positive for trisomy 12 with unmutated IGHV. Apart from this, i have been having continuous dry cough with stabbing pain on the lower ribs of my right side which worsens during deep breathing, sneezing, coughing or during yawning. on 15/12/2020 my doctor at local private hospital advised me to get my lung condition checked by chest CT scan and the result showed a bit of confusing spot lesion on my right lung. the doctor coudn't know if the lesion was due to CLL effect, another cancer type or due to scaring because of my recent pneumonia like case for which i was admitted to this same private hospital. Is there anyone to help me in briefing BR as treatment option for trisomy 12 and the reason behind the lesion seen on my lung? Thank you all for your response.

[Jm954 Administrator]

Hi there, from your previous posts I note that this will be your third type of chemoimmunotherapy in an approx 1 year time period, none of which seem to have had much effect, possibly because of you have unmutated IGHV. You don't say why you need treatment and it might be important and guide your treatment options.We can't really comment on your small lung lesion except to say that they are occasionally seen in the lungs of patients and need interpretation by a skilled radiographer plus possibly monitoring.

I'm guessing that there is none or little access to novel agents such as Ibruitnib which is a pity as that could be a good treatment option for you. Unfortunately I have no confidence that BR will produce a response for you.

I'm sorry we can't be more helpful

Jackie

[amaagabg2020 in reply to Jm954]

Thanks a lot for your interest in my case. your last responses to my questions were a great help to me in having some positive discussions with my attending local doctors. The problem with these noble drugs such as ibrutinib and acalubritib and other recently developed drugs is lack of access to these drugs is due to negligence prevailing in public healthcare system in Ethiopia. i have not seen a single sub-specialist such as CLL specialists to attend to your problem. there are only 3 or 4 hematologists in the entire Ethiopia. these hematologists only count on older chemoimmunotherapy regimen and are not familiar with newly developed drugs or clinical trials necessary for patients who are desperately in need of them. We CLL patients in ethiopia are in a dire need of help from you as CLL social support group particularly the administrators____AussieNeil, Newdawn and Jm954.we are merely dying because of govt incompetence and doctors' negligence. so as CLL support group you should not leave us at the mercy of incompetence here in ethiopia. if possible we form our own CLL self-help organization at our level and then pressure the govt and healthcare professionals to do sth about us. you can help us in advising on this or help us get access to alternative treatment options in our neighboring African countries where affordable and better treatment option than ethiopia can be found. silence should be broken. our sole individual life has no substitute. this time around i expect more broader vision from you as experts to find a way out of this dire situation possibly by providing constructive suggestion and information on how to form our own support organization. i look forward to your timely reply. thank you.

amaagsbg2020

[AussieNeil Partner Administrator in reply to amaagabg2020]

While your situation in Ethiopia is concerning, your country is facing the same challenges in common with our international membership elsewhere. You have identified the key to success for those with CLL in your country - "form our own CLL self-help organization at our level and then pressure the govt and healthcare professionals to do something about us." That is what many of us have done and that is why we are slowly changing the situation for those with CLL in our respective countries, No-one knows the situation in your country better than you and others with CLL who live in Ethiopia! You are the local experts, not us!

Note that all the administrators you mention are currently undergoing treatment for their CLL. Despite that, we are not only supporting advocacy efforts in our own countries, we are educating people throughout the world on the best CLL management and treatment practices through this forum and we spend many, many hours voluntarily maintaining this community forum so that people like you can use it to help others in their own country.

Neil

[amaagabg2020 in reply to AussieNeil]

My great thanks to you Neil. you are our role model in our future struggle with CLL and it seems to me that it is imperative for people like me to follow your footsteps in using your advice in all aspects of our daily life.please keep up your good work. i also wish you long and healthy life with the best of luck.

[Jm954 Administrator in reply to amaagabg2020]

AussieNeil is right that you are the experts in the CLL situation in your own country and we would not be able to apply our knowledge as usefully as you can. As a UK advocate we learn about the regulatory systems that are required to approve and fund drugs and then get involved in the process where we can. We lobby drug companies and our elected representatives, we set up charities to give patients a collective and loud voice and collect money donations to pay for postage and incidental costs (no one gets paid for any of this work), we go to the newspapers if absolutely necessary and we also build relationships with interested and expert doctors who work with us to achieve access to new treatments.

Importantly, we are polite but persistent in presenting our case with scientific information collected from meetings across the world and posted on the internet.

Neil is right that we are all fighting our own CLL battles, large and small whilst we do this. Often it does not benefit ourselves directly but we passionately believe that well informed patients, asking the right questions of their doctors and healthcare systems (even insurance systems) get better care.

All this you can do too, with very best wishes

Jackie

[amaagabg2020 in reply to Jm954]

Thank you very much. your advice is too much relevant and great help to me in the long and uphill struggle with this nasty disease of CLL in the time ahead. i will apply it as much as possible.

[Big_Dee in reply to amaagabg2020]

Hello amaagabg2020

I would have to agree with Jm954. I had a very aggressive CLL and un-mutated. I had 6 courses of B+R and 2 years post treatment. I am in deep remission. I did so knowing that if it did not work I had options of inhibitor drugs like ibrutinib. Blessings.

[amaagabg2020 in reply to Big_Dee]

Thank you so much for your reply. but if you could elaborate more on the result of your genetic test (cytogenetic tests), i would be very happy. is it trisomy 12 with unmutated IGHV, TP53, q11 or q13 ?

amaagabd2020

[Big_Dee in reply to amaagabg2020]

Hello amaagabg2020

First FISH test showed 13q deleted @ 53%, Second FISH was 13q deleted @ 67%, third FISH was 13q deleted @ 87%. Most 13q deletions tend to increase as your CLL progresses. Fourth FISH after treatment was 13q normal. I am in deep remission. This does not mean I do not have CLL anymore, although number of CLL cells is below classification for CLL. Being in USA, I had choice of B+R or Ibrutinib. I choose B+R even though I was un-mutated. Knowing full well I might have shorter remission. My CLL Specialist told me that I could do B+R and then Ibrutinib if I relapse, but could not do Ibrutinib followed by B+R. Hope I have answered your questions. Blessing.

[WinJ3]

Hi there, Sorry to hear what you are going through. I too am trisomy 12 and unmutated. I had painful chronic coughing and was diagnosed for Atelectasisis with a partial collapse of my lung area. My treatments with Gazyva resolved that problem.

I sure wish you had access to a CLL specialist, but I hope you'll find help for your problems. I know what you must be going through 🙏🏾

[amaagabg2020 in reply to WinJ3]

Thanks a lot for sharing your experience with me which is relevant to my current case. My best wishes and the best of luck to you.

amaababg2020

[5454]

💪🙏

[amaagabg2020 in reply to 5454]

i would be more than happy if you could do it in words. thanks

[5454]

Just sending you best wishes for hope and strength and prayers for you in your difficult situation. May God strengthen and bless you. Stay strong.