MD Anderson/Mayo or Peter MacCallum for treatm... - CLL Support

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MD Anderson/Mayo or Peter MacCallum for treatment?

writepa
writepa
67 Replies

Hi all,

My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow. The FISH test is not available yet until next week so the treatment plan is also not available. But seem that he’s on Stage IV under RAI classification.

We are in country in Asia where hospital is not that good so I’d like to take my husband to either Australia or US for treatment So we are considering Peter MacCallum in Melbourne and MD Anderson or Mayo Rochester . My husband had medicare so treatment in Peter MacCallum will certainly be cheaper and near our country (8 hour flight). For US, we will have insurance so we will have to pay full and flight takes 20 hour to get there so it will be tired for them .

However, through this forum, I heard that doctors at MD Anderson is very good at CLL so also want to take him there for treatment.

Anyone could give me advice or recommendation, I would really appreciate. Many thanks.

67 Replies
oldestnewest
writepa

Sorry I mean my husband does not have insurance in the US so we will have to pay full. but it’s not the main concern. I just want a good place and doctor for him.

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Ivotedfornixon

since i live in usa-unless you are willing to pay millions of dollars i[d go to where you have insurance

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Tommays56

Hi W

Sorry to see you in such a difficult position

The USA is a very long way to travel when you have good options in Europe and hopefully others can advise you on possibilities a bit close to home

I don’t know ever country well but for example a lot of leading CLL research is done in Germany

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Canuck901

I think mayo clinic , Dana farber or MD Anderson are all very good.

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Ivotedfornixon

will canada pay for you to go to any you mentioned?

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Canuck901

No I don’t think they would. Pay but they could collaborate with mayo clinic on advice for treatment

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Ivotedfornixon

do they actually do that for free with canada?

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Canuck901

Yes ibruntnib and Venetoclax are free in Canada of course with CLL specialist approval cost for the drugs are $9000 a month.

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Ivotedfornixon

not what i meant. would mayo clinic consult on canadian patient without a payment from canada.

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Canuck901

Well the Canadian. CLL specialist here consults with The Mayo Clinic CLL specialist about the patient

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Red49
Red49
in reply to Canuck901

Hi I Live in Canada and am currently being treated as I do not have high risk factors I am receiving FCR. Ibrutinib and Veneteclax are not covered under our Universal health care unless you are high risk or have other received a treatment and have relapsed. If you are not high risk I would think it would take some convincing to have our healthcare cover those drugs given the high price tag.

I do not believe my specialist has contacted anyone at the Mayo Clinic about my case...why would they? I just don't know what you mean by the comment above. I am sure Canadian CLL specialists are involved with other specialists around the world at conferences and such but probably not for individual cases unless it was extreme and warranted.

Sorry...I do not know much about our health care system but I do know being under Universal care we have restrictions to the type of treatments we can receive.

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habsrule
habsrule
in reply to Red49

Hi... I live in Quebec and started Ibrutinib on October 2nd. My doctor had to send a request to RAMQ for approval, which they accepted, so there is no cost to me for the drug. Thankfully Quebec looked after it as the cost is $9000 a month. I was in complete remission from August 2009 till 2018..(had FCR).

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Red49
Red49
in reply to habsrule

Wow that is a good remission from FCR I'm hoping for a long one as well. I am glad you got approval in QC for Ibrutinib I hope you do well on it. I think if you relapse it is easier to get coverage for Ibrutinib in all provinces. My plan is the chemo route once!

We have some great specialists in Canada who I believe do their best for their patients within the confines of our healthcare system. I know I had every genetic test done before treatment without question...I had not even heard of half of them at the time. And all at no cost to myself. Good luck going forward.

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habsrule
habsrule
in reply to Red49

Thank you Red..... and to you as well.....

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MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Canuck901

There are other equally amazing centers around the US and in other countries. Travel and insurance are important considerations. Fortunately, there are more and more incredible specialists around the world who share their research with each other.

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Panz

I too would seek out the best that my insurance would cover...I would not even consider gouging where I would have to pay out of pocket!!! Panz 🙏☘️💕

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AussieNeil
AussieNeilAdministrator

There's an experienced CLL team at Melbourne's Peter Mac that contribute to international CLL research. Among the better known are Professor Andrew Roberts from his involvement with the development of Venetoclax and Dr Con Tam, who trained at M D Anderson and co-authors papers with M D Anderson researchers. Both co-author CLL research papers with other international CLL specialists. So I would think that attending the Peter Mac would be a good place to start for your husband.

Your husband's access to Australia's Medicare system will provide him with affordable monitoring, but he will be limited to chemo treatments unless he is 17p deleted. You'll learn whether he has that from his FISH test results. There are clinical trial options in Australia that might provide access to non-chemo treatments, but I expect your location would make access to these difficult. The Peter Mac team may be able to assist you with finding a way to gain access to affordable treatment outside of Australia, perhaps through compassionate access program, but without USA insurance, you'd be looking at in the order of $50,000 for FCR or BR treatment for a 6 month course and $160,000 per annum or more for non-chemo treatments at M D Anderson or Mayo Clinic. It's too early yet to know the cost of time limited non-chemo treatments.

From what you've shared, whether your husband needs treatment soon will depend on why his platelet count is low and whether it remains stable. You can read the post below for guidance on the likely triggers for treatment for your husband: healthunlocked.com/cllsuppo...

Neil

PS You can edit your posts by selecting the 'More v' under them and then selecting 'Edit'

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writepa
writepa
in reply to AussieNeil

Thank you Neil and all of you for all the valuable information.

I think your advice is right, I will start first with Peter Mac and see if I'm fortunate to meet Dr Constantine Tam. Then I also seek advice whether non-chemo is appropriate for him and whether he could refer me to MD Anderson.

I'm also permanent resident of Canada. So I can enjoy free hospital there but I have not registered for health care yet so waiting time will be 3 months in Toronto. But since I need 3 months for insurance to be effective I would consider this option later.

Does anyone know how much it will cost totally at MD Anderson and how long it will take to get the appointment?

Many thanks all.

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JustAGuy
JustAGuy
in reply to writepa

I think a self-pay initial appointment would be $1500

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MsLockYourPosts
MsLockYourPostsVolunteer
in reply to JustAGuy

MD Anderson can be very expensive, as they usually want all tests - labs, scans, biopsies - redone there. It would be worth looking at what trials might be appropriate at the National Health Institute in Bethesda, Maryland ( Near Washington, DC). If you are in one of their trials all care is free regardless of where you are from, though those who aren't US citizens would be responsible for travel and lodging expenses. Those are covered for US citizens.

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writepa

Many thanks for your advice.

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BallparkChaser

I did a self referral at MDA and got an appointment within a month. They will give you an estimate of costs for self pay and require that payment be made before seeing the Dr. You can get a self pay discount if you ask for it (and persist) after the appointment but it is only 30%. My first appointment with labs was around $2500 in 2018.

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BallparkChaser

I should add that they have been great about working with my local oncology to mitigate my out of pocket expenses as I have insurance that covers in network (locally) for CT Scans, BMB, prescriptions etc. I do feel that I am connected to the best available technology, clinical trials, and opportunities with this arrangement.

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writepa

Did you get a 30% discount. I only get 20%.

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BallparkChaser

Sorry, I can’t tell now - i prepaid the estimated appointment costs and then it was applied as a credit to my account after repeated calls and requests several months later. I picked up Insurance this year and now the balance has gone up and down with deductibles and co-pay. I had heard both numbers - 20% and 30%.

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Ivotedfornixon

Neil-did you mean he's limited to chemo treatments unless he's 17p deleted?

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AussieNeil
AussieNeilAdministrator
in reply to Ivotedfornixon

Yes, that's generally the case outside of the USA. Access to non-chemo treatments is usually limited to those that are unlikely to do well on chemo treatments, either because they have unsuitable markers (17p del / TP53 del) or have previously been treated with chemo. Note that that means that even those that are unmutated IgHV will still be treated with chemo, despite the likelihood of having a significantly shorter remission than if they had IgHV mutated CLL.

Keep in mind that members of this community are well informed, so we know the importance of testing prior to treatment. The situation in the USA is not as we would like in this respect either! Per Dr Koffman's recent CLL Society report of an InformCLL study for the years 2015-18,

- Among all pts (N=840), 262 (31%) had FISH testing, 89 (11%) had testing performed for TP53 mutation, and 94 (11%) had testing for IGHV mutational status.

So in the last few years in the USA, if the InformCLL survey is representative, almost 70% of patients didn't have FISH testing and almost 90% didn't have TP53 or IgHV mutation status testing prior to being treated! That led to

- More than 1/3 of the 70 pts with del(17p) received chemotherapy or chemo-immunotherapy (CT/CIT) which is most unlikely to work.

- Of the 14 previously untreated pts with mutated TP53, (36%) received CT/CIT that is generally not indicated in with mutated

- Among 69 pts with unmutated IGVH that predicts for worse outcomes with CT/CIT, 32 of the pts (46%) received CT/CIT.

- In 35 previously untreated pts with unmutated IGVH, CT/CIT was more common (n=20; 57%) than ibrutinib (n=13; 37%).

- Of the pts tested who had abnormalities such as del(17p), TP53mutation, or U-CLL, approximately one-third still received CT/CIT.

cllsociety.org/2019/08/ash-... as posted to our community here: healthunlocked.com/cllsuppo...

Dr Koffman also reports about Dr Chai Nabhan's concerns about way too much chemo being used in the USA here:

healthunlocked.com/cllsuppo...

I hasten to add that I wouldn't expect that poor outcome from anyone attending either Mayo Clinic or M D Anderson!

Neil

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Ivotedfornixon

Neil-what i meant is that in your original post you wrote-but he will be limited to non-chemo treatments unless del 17p. I think you meant to say limited to chemo treatments unless 17p.

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AussieNeil
AussieNeilAdministrator
in reply to Ivotedfornixon

Thanks - now corrected.

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Mystic75
Mystic75
in reply to AussieNeil

Neil - you are on my grateful list.

Thank you so much for your wealth of knowledge and how you crystallize important information.

And, for taking the time to share it. It is so invaluable.

Thank you!

D.

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EugeneL2

Sorry to hear your husband’s diagnosis. I live in US and I am being seen at MD Anderson. I have insurance coverage and so far had two annual visits. I am in watch and wait, no treatment yet. They have one of the top CLL programs in the world. If you can afford it, I would highly recommend MD Anderson to you without any reservation.

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writepa
writepa
in reply to EugeneL2

Do you know how long I should plan for the first visit, assuming my husband needs to receive treatment right away. I know it's difficult to tell as it depends on whether he will get chemo or targeted drugs.

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EugeneL2
EugeneL2
in reply to writepa

When I contacted them for the first visit, it was scheduled on a Monday. They asked me to plan to stay until Friday, for additional testing if needed. It turned out, I had no additional tests. My visit was completed on Monday morning. They took 18 tubes of blood. They pretty much did everything all over again even if some of them I had results. I do not think they will initiate any treatment until they have your husband's IGHV status, FISH results, and TP53 mutation status. TP53 was part of the 29 gene CLL panel, it took 1 week to get the results. I believe they do everything in house. FISH results were available after 3 days. The flow cytometry result was reported the next day. These blood tests were billed to my insurance for about $26K. I had no CT scan while there. MD Anderson will help you to call airlines to change tickets if needed. I think it is part of their patient service.

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MsLockYourPosts

Welcome! You've found a good place to learn and ask questions.

A consideration, if you go to Australia, would be which treatments would be available to your husband through his insurance, if treatment is advised, and whether he could access other treatments there if he went outside of his plan. Also, what trials might be available there. Con Tam at Peter MacCallum is one of the most respected CLL researchers in the world. He is also very well connected to the other top CLL specialists world wide, so he would be able to advise you about treatment options outside of Australia, and where you would be able to access them.

I would certainly, at least, start with a consult with him if it's time for treatment. During treatment, the less travel needed the better, both in terms of exposure with a compromised immune system, and traveling when not feeling well, or having to juggle travel plans if your husband needed to stay over longer than expected during treatment.

Don't forget to consider the possible need for connecting flights when looking at travel issues. Long flights are tiring. Adding having to deal with multiple stops, getting from one plane to another, worrying about luggage, etc. can be exhausting.

Your husband's FISH results will be a part of any treatment decision. Has he also had his mutational status tested?

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writepa

Thanks for your advice. I also think long hour connecting flights are tired. It will take me at least 24 hours to get to Houston.

My husband has not tested for mutational status yet.

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cajunjeff

I go to MD Anderson, so I am biased. It’s about a four hour drive for me. There is a reason when watch tv from your room at md anderson that the tv has channels in Spanish, Arabic and Japanese. It’s because people from all over the world go there. If you can afford the trip and want the best opinion, that’s where I would go. My doctor there speaks Australian, I can kind of understand him. :)

And I would imagine lots of people go to get a consult at MD Anderson and treat, if they have to, near home. A doctor at md anderson can help remotely manage your care. When I had infusions I had a choice of doing them locally or at MD Anderson.

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johnl

Another consideration may be that at M D Anderson or other U. S. hospitals could get your husband into a clinical trial that would get you some or all of your drugs for free. there are a lot of them going on right now.

john

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Big_Dee

Hello writepa

My treatment for B+R, (milder chemo treatment for those over 65 years in USA), was $233,000.00 (USD) over 6 months treatment in USA. Any treatment will require monitoring during your husbands life time, hence periodic travel and expense. Ibrutinib is available in USA first line, but $191,000.00 (USD) without insurance. Best care would be USA, but require a lot of travel and expense. You still do not have enough information to make determination what treatment or where to go. I do not know if FISH or IGHV mutation testing is available where you are. Wish you the very best, contact this forum when you have more information.

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writepa
writepa
in reply to Big_Dee

Thank you for your information. I’m still waiting for the FISH result so I dont knsow which treatment yet. My husband is under 50 so he falls under young category but not sure if it’s fit because he has abnormality in spleen and a mild large fever.

I just wonder if he’s not 17q or TP53, should he take Ibrutiniv instead of FCR. I will wait for doctor advice but just want to know other opinions. thank you.

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newyork8
newyork8
in reply to Big_Dee

I believe IBR is closer to$12k month or $144k/year...if thats any better

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Big_Dee
Big_Dee
in reply to newyork8

Hello newyork8

Depends on where you are at and provider. Most pay from $13,000.00 to $16,000.00 USD per month. As you say generally does not make difference, still too high for most people out of pocket. Highest pricing was to kick in Jan. 2019, but there was a lot of push-back.

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alpek

Would second the suggestion to look into clinical trials as there are many trials currently available in Australia/US/Asia that may be an option, the costs of drugs are generally included which are the main cost of treatment. You can search for trials globally via the below link.

clinicaltrials.gov/ct2/home

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MaxSmart

Dear writepa,

Sorry to hear about your husband but the good news is you have found this group. In my experience this group is very special with deep knowledge about CLL. The first question thing I would say is that there are several types of CLL. Some are very aggressive and some are very slow moving. These come with numbers like 11, 13 or 17. Do you know what type of CLL your husband has?

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writepa
writepa
in reply to MaxSmart

I dont know yet and still waiting for the result. CBC last two years are still normal but I guess it advanced very quickly in the last 12 months and we don’t know. So I feel it is progressive very quickly.

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MaxSmart
MaxSmart
in reply to writepa

Whatever happens, stay in touch with this group. There are so many smart people here!

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writepa
writepa
in reply to MaxSmart

Thank you MaxSmart

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MaxSmart
MaxSmart
in reply to writepa

In case nobody has told you there are new miracle drugs on the market for CLL. They are so good at clearing up the problem that you have to increase the dose very slowly because if you take the full dose all the cancer cells die at once.

I’m sure this CLL diagnosis has been a shock. I see you wanting to do everything possible to help your husband. I’m not a doctor but from my experience over the past five years I would guess that there is a good chance that whoever you go see they will put your husband on either Ibrutinib or Venetoclax or both. And then he will start to recover.

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writepa
writepa
in reply to MaxSmart

thank you MaxSmart

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MaxSmart

One more thing, Stage IV is pretty advanced, but with today’s new treatments so much more can be done and than just a few years ago.

~Max

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AussieNeil
AussieNeilAdministrator
in reply to MaxSmart

Stage IV in CLL is not like other (typically acute) cancers. I'm still in watch and wait nearly 11 years after a stage IV diagnosis. It depends on the tempo of your disease, which can speed and slow.

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writepa
writepa
in reply to AussieNeil

may I ask what’s your current number in term of WBC, platelet count....any enlarged spleen, liver, node or anemia? What put you in stage 4 CLL? And I suppose you dont feel any symtoms such as fatigue, sweat, bruising....Thanks Neil.

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AussieNeil
AussieNeilAdministrator
in reply to writepa

I started off with the SLL expression of CLL/SLL, which progressed to the CLL expression around 2011/2012 and lymphocytes have continued to climb overall but with occasional pauses. I suspect the SLL started in a node on my thigh quite a few years before my eventual diagnosis. I was neutropenic in a mid 2006 blood test, so that and increasing fatigue from the early 2000s makes me think I had CLL/SLL for maybe 5 years before my diagnosis from investigating my worsening neutropenia, which dropped to 0.4 in early 2009 before recovering partly, then slowly worsening over the years. The stage IV diagnosis was because of the bone marrow involvement (54% infiltrated, causing cytopenias) and spleen involvement (protruding below my rib cage at diagnosis).

I had a horrendous first few years after my diagnosis, due to low immunity (constantly fighting off infections), often overwhelming fatigue and temperature regulation challenges. I voluntarily quit driving for nearly 2 months because the CMV infection after diagnosis knocked me so badly, frighteningly impacting my reaction time.

In addition to the chronic neutropenia, I've had worsening thrombocytopenia (low platelets) since early days. I've been anaemic for about 5 years, but it's thrombocytopenia that will trigger my need for treatment soon (counts in the 50s this year). Despite that, I don't often get spectacular bruises. Spleen and nodes have remained stable, possibly because I've been taking high dose green tea/EGCG for over 10 years, or it could be because I'm IgHV mutated. I get the occasional night sweats, with poor temperature regulation an issue at times. I can suddenly get very ill with changes of temperature or following exertion.

What my experience might mean for your husband, is that he may be able to stay in watch and wait for a few years yet. The relevant trigger for your husband starting treatment from what you've shared, could be his low platelet count, but the iWCLL guideline update in 2018 allowed watch and wait to continue when platelets fell below 100, provided they remained stable. I've learned that stable when it comes to CLL can also mean a slow, downward trend in cytopenias. The specialist just needs to be satisfied that there will be enough of a buffer when treatment starts to minimise the risk of needing transfusions.

You are doing the right thing in seeking a specialist centre with plenty of experience, so that they will treat your husband by his overall health, not just his numbers and have a very good feel of when the treatment window has arrived. In your husband's case, that will include a consideration of local medical expertise with CLL. That's not particularly easy anywhere, due to CLL being relatively rare, but even more of a challenge in Asia, where it is rarer still. Knowing when access to affordable non-chemo treatments locally is likely to be available would also be a consideration, as would the difficulties with long distance travel when immune compromised and anaemic (with which I have had recent experience).

Neil

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writepa
writepa
in reply to AussieNeil

Thank you Neil so much. I really appreciate your time and effort explaining this to me. It means a lot to me.

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writepa
writepa
in reply to AussieNeil

I think because your platelet count is stably low so treatment is not triggered and it's related to your immune system?

In the case of my husband, his spleen is quite large, I think maybe considered massive splenectomy so treatment should start.

I just concern that he did annual health check last year, and nothing is detected. Why in one year it develops so fast, that's not really a good sign right.

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AussieNeil
AussieNeilAdministrator
in reply to writepa

According to the 2018 update of the iWCLL Guidelines, spleen related treatment triggers are:

Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.

So if it is growing rapidly, even if it hasn't exceeded 6cm, his specialist may suggest treatment. The spleen shrinks back to normal with treatment, but an enlarged spleen filters out platelets and red blood cells, causing problems.

Neil

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writepa
writepa
in reply to AussieNeil

thank you Neil.

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writepa
writepa
in reply to AussieNeil

I saw in your profile you were in stage iv SLL 11 years ago not CLL, right?

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Bbrezv

Medicare covered costs for my late husband's care for the last six months of life were over half a million dollars in the US. If you are self pay then you will be paying "retail." If AUS is comfortable and you are covered, I would opt for that. You may need that money for later treatment or hopefully to enjoy yourselves after he is well. Best of wishes to you.

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writepa

Thank you Bbrezv for your information. We do have some savings so i think the cost should be okay. I’m more about treatment options chemo vs non-chemo.

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Hoffy

There are many great CLL doc around the USA. Dr Kipps and Choi are very good at UCSD as well.

Clinical trials might a good option because they sometimes have the best combo treatments - in my opinion and many time the drugs are paid for by the study.

Look at a couple options or more if you can and decide who is best your your husband.

CLLsociety.org has very good Information and a video free second opinion program.

Be well, keep learning,

Hoffy

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MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Hoffy

CLL Society's online second opinion option is limited to US residents at this time. Hopefully other countries will be able to implement a similar program.

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Motoli

Treatment in the USA may cost you a fortune, not only because of the cost of the novel drugs, but hospital and medical charges are huge as well. For instance, USD 10,000/day is not an unusual amount.

Since you mentioned Germany, you may wish to consider the Koln group led by Dr. Michael Hallek, one of the top CLL doctors in the world. I truly do not know if venetoclax/ibrtuinib/acalabrutinib, etc. are available there, and at what cost. However, hospital and medical costs will be about 10-20% of what you will pay in the USA. The hospitals there are very well equipped and nurses are excellent (sometimes language is an issue because they have nurses from Spain and Eastern Europe; however, it is not an unsurmountable barrier).

Another option may be in Paris, France. The Pasteur Institute was a leading research group in CLL (the clinical trial leading to the "watch and wait" strategy came from France, as well as the Binet staging system). In addition, medical costs will be much, much lower than in the USA.

Concerning the USA, MDA Anderson, Mayo and many other hospitals are outstanding, provided you have good health insurance, or you are rich.

Good luck!!!

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The_Eagle

Hi my counts are lower than your husband and I been dealing with CLL since 2005 first treatment FCR in 2009 and Pills in 2017 but could not tolerate them. I might got into a trial at University of Texas with Dr Awan. two pills and maybe remission. his number is 214 645 4673 if you get in the trial the drug should be free. Tell him Bill recommended him I also went to MD Anderson they are also good

Bill

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writepa
writepa
in reply to The_Eagle

thank you Bill. much appreciated.

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writepa
writepa
in reply to The_Eagle

Hi Bill. Your platelet is lower? Do you have enlarged spleen or liver or nodes?

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Tovtovtov

Dr. William Wierda at MD Anderson, probably the best in the world for CLL...

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MsLockYourPosts

A list of best in the world would include the doctors at MDA, but there are many others from other countries! Number one is getting your husband's FISH results, finding out whether his mutational status was tested along with the FISH, and finding out what his current doctor thinks. He may be consulting about your husband's case with specialists already.

You didn't mention what your husband's hemoglobin is or how fast his platelets have gone down. Those answers should play into his doctor's assessment.

I wouldn't let your thinking be locked on MDA. Take things one step at a time. Melbourne is a logical place to start, as far as experts. One Australian friend, who could not get the treatment she needed there, flew to the US and then Canada talking to specialists, including Dr. Keating from MDA and Dr. Kipps from University of California, San Diego. They are both known internationally, but could not offer a treatment or trial that she felt was right for her. She ended up in a trial in London and is doing very well.

Before choosing a location for treatment, find out what your husband is dealing with, whether he needs treatment or monitoring now, and, if it's time for treatment, start looking at which centers, in which countries, would be able to offer the best treatment for his particular CLL.

AmericanRonin might be able to advise you about dealing with getting care outside of Asia. I believe he might be covered, insurance wise, in the US, but has had to deal with what is involved with getting his treatment med from the US to his location in Asia.

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