Enlarged spleen and high cost of calquence - CLL Support

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Enlarged spleen and high cost of calquence

craterlake profile image
45 Replies

hi, i forgot to ask my oncologist if the calquence he prescribed would make my spleen return to normal size even if it is as large as mine .. my spleen is currently 3 times the normal size ..... it is VERY uncomfortable ----- anyone have their spleen return to normal when it is as large as mine ? --------- also i checked with my medicare B insurance company to see how much the calquence would cost .. they informed me that for the first 2 months my copay would be $5,000 . yes that is five thousand dollars . then the cost would go down some

but unfortunately they could not say what the lowest monthly cost would be .. thanks again for all the advice .. james

45 Replies
country76 profile image
country76

Hi, My spleen was described to me as massive, 4x normal. I could feel a corner below my left rib. I started with ibrutinib and the spleen went down to normal size, blood work normal range and WBC almost normal range. This happened within a month or two.

I changed to Alacabrutinib after 14 months due to side effects and my WBC has become normal range. Alacabrutinib has worked great for me.

Best of luck.

craterlake profile image
craterlake in reply to country76

thanks very much .. that is really good to hear .. my spleen is almost to my belly button and as tall as my breast bone ...... i hope you continue with that wonderful success.

country76 profile image
country76 in reply to craterlake

My spleen had also spread towards my back. I guess it just stretches where ever it can.

I hope you will have the success I have had. The headache was very mild and was gone quickly. Sometimes I do get a little fatigued, going to bed early helps and watching what you eat.

craterlake profile image
craterlake in reply to country76

hi country , thanks for the reply .. i had a ct scan 4 months ago and they said my spleen was pressing on my left kidney , my pancreas , my diaphragm , my stomach ,my ribs and my intestines ...the dimension are 22.5 cm in length and 17.3 cm in the axial plane .. it also says there is an ill defined , enlarged ,and prominent lymphoid tissue in the upper abdomen.. i am 5 ft. 7 inches and now weigh only 130 pounds so it is quite a burden . ... all i was told is that it is enlarged ... and i thought ---- yes i already know that ... .......well headed for bed . thanks to everyone for the wonderful support ... blessings , james

country76 profile image
country76 in reply to craterlake

It has sure taken over, Alacabrutinib should make you feel a lot better.

craterlake profile image
craterlake in reply to country76

that would be great !!!

St1968 profile image
St1968 in reply to country76

Same here. My spleen was huge, due to the fact, that I waited during COVID to seek outside support of the country of residence (China). It was 31*17*12cm^3, I could see the left side of abdomen higher when laying and when coughing the whole body hurt. All the organs shifted to the right the stomach was compressed, so i lost over 15kg due to being "never hungry", without knowing why.

So, when we finally started with Ibrutinib here in China it was high time.

However, the spleen was just ONE organ that was full of Lymphos as a compartment for storage. The backbone was another one and as soon, as we started the Ibrutinib therapy, several things happened:

- massive increase of blood concentration of WBC (from 60 to over 350)

- reduction of spleen size quickly (that's where the bulk of Lymphos were sent to the blood stream)

- unbearable pain due to the lymphocytes in the spine bone marrow were weakening the vertebrates, and several underwent compression fracture, causing nerve pain.

The first two things you should expect, I understand from research I did (also on this forum) that this is VERY VERY rare. but if it comes, you might talk to your physician about it.

Good luck, and I can assure you, the spleen goes away, the stomach got more space and (not so good for me, due to that) weight started to increase again...

craterlake profile image
craterlake in reply to St1968

thanks for the details of your experience ..it is very good to know that the pills can shrink the spleen to a manageable size .. i am sorry to hear that along with the good results you had some serious pain . i hope you are doing much better now . james

KMac1969 profile image
KMac1969

Yes, it should come down in size. As the acalabrutinib "pushes" the "pushes" the leukemia cells out of the lymph nodes, spleen, etc..

The copays should be handled by the Copay assistance program. Who are you getting it from? Most specialty pharmacies do it without asking. I think it is up to $26,000 a year in assistance.

craterlake profile image
craterlake in reply to KMac1969

thanks for the reply ''''' thats pretty amazing that it can do that .... i was prescribed the calquence 3 months ago but have not started taking it yet . i have been approved by atrio for the calquence but the copay is way more than i can afford . i have not heard of the copay assistance program . at $2,000. plus a month for my copay .... $ 26,000 a year would cover the whole cost ...

in reply to craterlake

You can get help with medication copays from PAN Foundation, Lymphoma and Leukemia Society (LLS.org) HealthWell, American Cancer Society (cancer.org). I have also found that specialists have contracts with the drug companies and dispense the drug for a fraction of the cost of my insurance’s plan. Also apply to the drug company. My insurance co-pay for Imbruvica was $5,600/mo but my specialist got it for $2,000/mo. You don’t have to be at poverty levels of income to qualify.

craterlake profile image
craterlake in reply to

i will definitely have to check all the different programs out .it is VERY encouraging to know that the drugs can be affordable after all.;;;; thanks , james

in reply to KMac1969

What is the copay assistance program?

KMac1969 profile image
KMac1969 in reply to

astrazenecaspecialtysavings...

lankisterguy profile image
lankisterguyVolunteer

Hi craterlake, -

Please use this link to get help from the LLS lls.org/support-resources/f...

youtu.be/VGbsuZe4lDA

youtu.be/oVqwjxzVPt8

-

Len

craterlake profile image
craterlake in reply to lankisterguy

thanks Very much Len . these youtube info video clips are well done . that will be a blessing if it all works as described .

lankisterguy profile image
lankisterguyVolunteer

And BTW, the cost coverage for pills taken at home is usually covered by Medicare Part D a commercial drug insurance program.

-

Part B is run by the Federal govt. and covers procedures and treatments administered by trained medical professionals.

-

These are alternatives to LLS.org

rxassist.org/patients/res-c...

cancercare.org/publications...

-

Len

craterlake profile image
craterlake in reply to lankisterguy

Len thanks again for all the info .... i will check on part D also . thats really helpful to know that the LLS program would even pay for part or for all of the insurance premium ....as well as the co-pay .. my wife will be relieved .. there is such a wealth of helpful info on this sight . all we can do is to keep looking up and moving forward in this journey ...... God bless ! james

in reply to craterlake

The United Health Care (AARP) Medicare supplement plans are much better than Part D coverage

craterlake profile image
craterlake in reply to

thanks that is good to know .. james

lsutigers2018 profile image
lsutigers2018 in reply to craterlake

I pay $8.60 per month for 3 imbruvica pills daily. I have medicare, humana supplements, and also medicade due to high cost of $180,000 annually. Baylor college of medicine Hemotology got that arranged for me. I am not sure if a grant was added. But ask your specialist to help you get it paid for.

craterlake profile image
craterlake in reply to lsutigers2018

thats amazing . thanks for the reply . i would never have thought that anyone could get that much of a discount . james

👍

Mystic75 profile image
Mystic75

Hi James,Many times the spleen will return to normal size with the help of treatment ,regardless of the size. Sometimes it may not return fully to what is considered normal size due to scar tissue within the spleen.

I understand that can sometimes happen to lymph nodes as well. My understanding is that when that happens, it is usually not a significant difference but just might not be within what is considered 'normal range'.

D.

craterlake profile image
craterlake in reply to Mystic75

thanks for that info . it would be great if it only reduced it to 1/2 the size that it is now . james

lankisterguy profile image
lankisterguyVolunteer

Another PS. If you are on Medicare and your PartD drug insurance is denied entirely, ask your CLL expert doctor or the company that makes the drug prescribed, some companies like Genentech have programs to provide the drug free. -

I have been getting Venetoclax from Genentech at no cost due to a Part D denial 5 years ago.

-

Len

craterlake profile image
craterlake in reply to lankisterguy

thats wonderful !!!!! . thanks again ! =-)

albie58 profile image
albie58

Craterlake,

Go to the pharma site that manufactures alacabrutinib or calquence and check and see if they will pay for your copay. A friend of mine is getting hers paid through the pharmaceutical company. Many people don't think to check the manufacturer's site but in most cases, they will help out or even pay the co-pay. I think there is a stipulation or two but it's worth and shot and you never know if they will pick up the cost. Pan foundation is another source, as well as LLS. Good Luck!

craterlake profile image
craterlake in reply to albie58

very good .. will do ! i am defiantly new to all this .. .. i have not needed a prescription for anything since i have been a vegan vegetarian .. that was over 30 years ago .. i am 73 now and need all the help i can get . thank you . james

Pageboy profile image
Pageboy

My spleen started to come down almost immediately on Acalabrutinib - or so it felt. It is an expensive drug. In the UK it’s a fortune. My insurance pays around £6,000 pm I believe (or could be for two months as I get a two month supply. Either way, it’s a lot!) Hopefully, it will start to come down soon and more people can benefit from it.

craterlake profile image
craterlake in reply to Pageboy

you must have very good insurance .. i am glad that you are able to get such a program to pay for your meds ... i was pretty shocked when the oncologist looked at me with a straight face and said the retail price for the calquence was 15,000 u.s. dollars per month ... thankfully there seem to be a number of options to bring the absorbent cost down to a reasonable amount .. thanks for the reply .. james

SERVrider profile image
SERVrider

Craterlake, I had a very enlarged spleen and cervical lymph nodes. I started on acalabrutinib on a compassionate early access scheme in June 2020. (It wasn't then licensed in the UK) so it had only its generic name) . The spleen and lymph nodes reduced rapidly and my spleen scurried back to hide under the the bottom two ribs on the LHS. over a month or so. I have been lucky that I have had virtually no side-effects and my blood results, after an initial spike on the WBC, have returned progressively to almost "normal" levels. Even my platelets which had dropped to around 30 are now back to 83 (Normal is 150) so they've a way to go yet. Now it has a product icence, it comes in proper blister-packs in "Calquence" boxes. While the NHS gets a discount from AZ, I know it is still eye-wateringly expensive but, hooray for the NHS, that cost isn't passed on to the patient.

craterlake profile image
craterlake in reply to SERVrider

Hi SERVrider , you have one of the best testimonies i have read concerning your success with acalabrutinib . thanks for sharing the details of your spleen reducing in size and your blood work improving so much ... i hope you continue with your success story .

👍 blessings , james

mteaney profile image
mteaney

I have been on Ibrutinib for 7 years and before and after that I had a slightly enlarged spleen. About 3 years ago, my specialist detected that my spleen had further enlarged, so she sent me for a scan. It took about a month before I could get an appointment for the scan and while waiting, I did a google search where I came across an article that suggested that eating raw bell peppers can help with this kind of issue. I began eating 1-2 bell peppers per day and by the time I went for the scan, my spleen returned to a normal size. The article I read said that red bell peppers are the best, followed by green bell peppers. Yellow bell peppers are the least helpful

craterlake profile image
craterlake in reply to mteaney

that is really good news ... i seldom read anything positive about how your diet may help with your CLL symptoms ... except for dr. Longos book on the longevity diet and fasting ... i have not read anything about the peppers helping the spleen .. i am severely anemic and i am taking iron supplements and the vit. c helps you absorb the iron better . it also says that red bell peppers have about 2 1/2 times more vit. c then oranges ... it is a 56 mile round trip to the store from my house and i went this afternoon and bought some r. peppers .. and ate one for lunch . even if it does not help my spleen the peppers are a good source of nutrients ...and will help with my iron absorption . so thanks very much for your reply , and i hope you continue with your success story . God bless ! james

Scooby852 profile image
Scooby852

I was on Calquence briefly, had to go off for side effects. It was going to cost me about $12,000 a year to stay on Calquence. I called Astra Zeneca and talked with them and they gave me credit for my co-pay. I do not qualify for financial assistance but I simply told them that I couldn’t afford the co-pay and that I could find another drug with a lower co-pay and they were very very very accommodating. Give it a try!

Prior to my calling them my oncologist and the pharmacy reached out to them and didn’t get very far. You may have to do this one on your own. Good luck!

Zia2 profile image
Zia2 in reply to Scooby852

May I ask what you are on now?

craterlake profile image
craterlake in reply to Scooby852

Hi Scooby , sorry to hear that it did not work for you . yes after reading some of the replies

i check out the A.Z. site and it says if you are on medicare and have part b or d then i am not eligible for their assistance program . ... have you found another drug that is working for you ?? thanks for your reply , james

cll2013 profile image
cll2013

Just a note about Medicare . . . I'm thinking you mean Part D - Rx coverage. When I was on Ibrutinib, Part D covered about $7,000 and a foundation picked up the difference for a total of $10,000 a month. Tomorrow I start Acalabrutinib and the Specialty Pharmacy has "made arrangements" to cover it. One of the requirements is that a patient must have Rx insurance; there also is an income restriction, but at the price of the med, most people would meet the restricted amount.

craterlake profile image
craterlake in reply to cll2013

hi, i have medicare and part b so my copay is high .. i will check out some of the suggestions given here tomorrow .. that is wonderful that you have found a great source to pay for your meds . thanks for the encouragement . i hope the acalabrutinib works very well for you . james

skunkbay53 profile image
skunkbay53

Contact the PAN foundation and apply for a co-pay grant. There are other places too that will give grants to help pay co pays. My husband is down to one Calquence a day after starting it last August then having 4 weeks of Rituxin infusions...he was still so tired that his Hematologist told him to try Calquence once a day. So far so good. Took spleen down

craterlake profile image
craterlake in reply to skunkbay53

Hi Skunkbay , another good report about calquence and the possibility of a grant for the co pay . that is such great news about your husband .. we are hoping and praying that i will have the same positive results as well. thanks for your reply . keep looking up from where our help truly comes from..... james

oztrader profile image
oztrader

Hi Craterlake

I am in Australia on a 4 yr Assure Trial ( already 14 mths) using Acalabrutinib ( only a half dose due to AE's ) it's working very well now , Spleen down to normal size , glands nearly back to normal ,blood tests nearly normal. It and all the CT scans etc cost me nothing and after the four years I can continue getting it for nothing. They even pay my car parking at the Clinic .

Maybe you could find a Trial in your area . For me it's been wonderful , my age , 77 DX 2015 .

All the best in your journey.

craterlake profile image
craterlake in reply to oztrader

wow oztrader , that is wonderful.. good to hear lots of success stories with acalabrutinib ... i am in oregon ... i saw on the internet that they are doing a trial now in B.C. Canada . Australia really does have a good health systems as far as i can tell .. i read one account that said the calquence would only cost $43. aussie dollars a month . Amazing ... that you can get such good care for free. Good on you mate .. and the pill is really working great for you .. it would be such a relief for my spleen to be normal again . thanks for the good report .

👍 james

TroutFly profile image
TroutFly

I am starting my 4th month on Calquence. I have a Medicare Advantage Plan. Calquence is covered under the prescription drug benefit. My 1st month co-pay was about $3,000. The last 2 months, I have paid about $700. On this basis, I estimate my share of the cost for Calquence will be between $10,000 and $11,000 per year.Also, you might talk to your congressman. There are several bills floating around congress that would limit out of pocket expenses for prescription drugs under Medicare to $2,000-$3,000 /year.

craterlake profile image
craterlake in reply to TroutFly

Good morning TroutFly , everyone one on H.U. has been so very helpful . i started calquence 6 months ago and it is working great with just a couple side effects that i can live with .. i applied to the PAN foundation and they gave me a grant to pay all of my co-pay so i thank the Lord that i have been getting the calquence for free. hope you are doing well. blessings , jim

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