Living with Leukemia (CLL) for 10 Years: My First Symptoms & Finding the RIGHT Doctor!

Hannah Dela Cuesta didn't have any noticeable symptoms other than some fatigue, which she thought was normal for her. But after a routine doctor's appointment, her GP noticed she had a high white blood cell count and she referred her to see an oncologist. She was then diagnosed with chronic lymphocytic leukemia.
In this story, Hannah shares her 10-year journey living with chronic lymphocytic leukemia (CLL). She opens up about her initial diagnosis, making treatment decisions, managing side effects and more. She also shares the importance of asking questions, seeking a second and the importance of finding a CLL specialist.
Full story & transcript → www.thepatientstory.com/patie...
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Contents of video:
00:00 Introduction
01:10 My first symptoms
02:46 My treatment options
06:27 Finding a second opinion
07:26 Being on Imbruvica
11:58 Working with a CLL specialist
20:13 Finding a new treatment option
24:42 Side effects of treatment
28:39 Starting Venetoclax
29:06 Words of advice
#CLL #thepatientstory #cllsm #sll #chroniclymphocyticleukemia #leukemia #patientstories #cancerstories #cancerpatient #cancersurvivor #bloodcancer #watchandwait

[@ThePatientStory]

We’d love to hear from you: What topics would you like The Patient Story to cover? Leave us a comment below 👇

[@annt7384]

I’ve kinda always had a high white blood cell count, but since I’ve been complaining about fatigue for a while now, my MD referred me to the hematologist oncology department at my local hospital, and my appointment is tomorrow. The timing of seeing this is incredible!!! Thank you!

[@karenlong4817]

Praying for healing for you. In Jesus's name I pray. AMEN

[@cynthiacarlson6404]

Many blessings for healing!! Stay positive

[@pattykarcher1200]

How did you're appointment go, did you get any answers?

[@Pan472]

Any update? What happened?

[@annt7384]

@@pattykarcher1200 Apologies I didn’t see this earlier! My bloodwork didn’t raise any issues with that department, thank goodness. So even though my count was rated as high, it would have to be 10x high to be suspect of cancer. Thanks goodness!!!! I haven’t solved the fatigue issue, but what a blessing to I be cancer free. Thank you so very much for your concern!! I also had a radial scar excised from my left breast, and the pathology came back on that, which also cancer-free! I feel like I dodged a bullet here.

[@valentinacardona173]

Such a beautiful human being she is . Living with any disease is hard but dealing with a chronic condition is worse

[@alrusso9563]

I was ecstatic when my wbc hit 50,000. I was at 249,000 when i was first diagnosed. At 4000 now after 1 and a half months of obinutuzimab and venetoclax. Keep fighting, and i hope you are well. I am blessed to be in the care of the Wilmot Cancer Center's CLL team, and they are up to date with the newest treatments available.

[@davewagner5408]

I was on the same meds myself,3 years ago. They worked wonders for me immediately,and with almost no side affects.

[@juttagrimmer2058]

My husband was diagnosed with CLL a year ago (uk) the haematologist was brilliant and explained everything. I’m always astounded that in the USA, you have to find your own doctors. It’s such a tough time anyway you kind of need people to tell you how/why things are happening. We were told watch and wait…and my husband has bloods taken every 3 months and is doing brilliantly. Such a lovely lady with some excellent advice.

[@lillyrocks2011]

I'm in Mexico, I need to guess where to go, guessing. Here a real Public health system is practically inexistent.

[@maggieensley8819]

Wow did I need to hear this today. Just diagnosed with CLL/SLL at the age of 54. Really tanked two years ago with progressive spine pain multi level cord compression and rising lymphocyte counts. In the process of getting worked up with regard to lymphoma, on my second hematologist already because the first doctor did no history and no physical. I just knew that wasn’t right. Oncology workup and Neurosurgery workup simultaneously and Im scared. Im scared in so much pain andI m too exhausted to function. I need a good team. Good luck everyone ❤

[@scottcummings8074]

I have mantle cell lymphoma. It can't be cured and has a short life expectancy. I took chemo for 8 months and had a pet scan and was told I need more chemo, radiation, and a bone marrow transplant. That would give me 10 to 15 months. Otherwise I had less than 6 left. I went ho.e and started eating apricot seeds and walking and praying a lot. That was 5 years ago now. I still have lots of pain, but I enjoy life. My oncologist recently did blood work and instead of giving me a short sentence, said my cancer has turned into cll, and my count is only 10000. She also said she doesn't understand how that happened that it shouldn't go backwards like that,but it has. Don't be scared, don't give up. Honestly, I am at peace with the lord and dying. I did, for how I felt give in to what they said and didn't expect to live. But all of this happened over 5 years ago and I'm still living life. May God give you peace and bless you.

[@mellink14]

PTL!

[@istvanbartha7985]

Hi, how do you feel after 6 months? I just got my diagnosis....so I'm just taking it in...and I try to gather information. I live in sweden and we have excellent healtcare over here......but I have had to reconsider my future plans....I had a dream of moving to a warmer climate....But if that means that the treatment would be dried bat wings and spider web, then I may have to stay put.

[@ASpectacular3777]

@@scottcummings8074Hi Scott, glad to hear your great news! Could you tell me how many apricot seeds you would take and if it was daily, weekly, and do you still take them. Very much appreciated and may you continue to be in good health.

[@scottcummings8074]

@@ASpectacular3777 sorry I didn't see this sooner. I started out eating 2 in the morning and 2 in the evening. I increased 1every dose for a couple weeks until I was taking 25 a day. You want to start slow so you can stop if it kills the cancer cells to fast. After a couple months I cut back down to 8 to 12 a day. If I feel worse like my counts are going up ill increase the seeds for a while. By doing this and just going by how I feel I've controlled my lymphoma for close to 6 years now. I suggest doing your own research and deciding for yourself on what treatments you want to take. I have stage 4 mantel cell lymphoma and clls. To me choosing apricot seeds over being put into a choma for more chemo, radiation, and a bone marrow transplant just to live 10 to 15 months more was not much of a choice. But I can say I made that decision over 5 years ago and have hardly seen a dr since. I just don't want to cause someone to avoid a dr when there might be a possible cure for their cancer. There was not for mine though.

[@luv2learn995]

Oh wow. My husband has CLL and I am so sorry you were with that doctor.

[@sderk9314]

Wow What a great lady you are Hannah honestly you spoke the language and brought this cancer to the Ask the questions! Instinct matters. Have a specialist work with your Doctors. Thankyou for sharing.

[@emacro65]

Such a helpful and hope full interview. Thank you!

[@istvanbartha7985]

I was diagnosed with CLL three weeks ago. I have felt tired at work the last few years, but now I got the answer why I lacked the extra supply of energy. They are very understanding where I work which is great.

[@cnorman8383]

Your story is terrific, I actually live in Louisville and I go to Doctor Stevens so that makes me feel so much better! Thank you for posting this! Chris N.

[@beverlyt.5526]

What An Incredible Story And An Incredible Lady ❤🙌. I LOVE YOUR HAIR!!! Congratulations On The Adoptions Of Your Two Amazing Boys 🙏💙🩵!!! What A Gift For Them AND You And Your Husband 💕🎉!!! May You ALL Grow Old Together!!!

[@SkyfullofStardust]

I'm so glad you are in such good hands now, you seem like an amazing person. I hope you can enjoy your life and live it to the fullest!

[@zaijian4377]

Congrads on adopting yr 2 teenage sons. I was diagnosed with cll in 2011, at that time my wife and I had 5 teen foster girls. Hard to believe in this world i'd hear someone in a similiar situation. My first words when the dr said i had cll were " my life is over". Ha! Dumbest thing i ve ever said in hind sight. I had a bone marrow transplant then a cart t. Now been on imbruvica for just abt 4 years with excellent results. What brought me here was just looking around for how pple deal with the side effects. Its brutal. Oh well. I'll put you in my prayer book for a successful adoption. Foster kids are a blast. My last girl aged out abt in 2014. GL ~

[@chriscook9611]

I saw Dr Stevens for the first time yesterday, due to your video, and will keep your Cincy expert, Dr Berg, in mind for the future. Thank you for Dr Stevens name. I live in your town, too, and was very happy with his whole practice. Being newly diagnosed, there may be a long road ahead. I’ve got an excellent start. Thank you!

[@Yourenotreal7]

Thank you🤗

[@rebeccaluzira5242]

Your right lam on ibrutinib capsules but it very expensive.

[@MrXcrt]

10 yrs of W&W for me , WBC @ 182 , A symptomatic but not sure if the aching bones is age(62) or CLL , informative vid -good story

[@evelyncr39]

Diagnosed at 51 with CLL. No symptoms, praying I'm one that never needs treatment, its scary and stress inducing. I am grateful for these videos.

[@kittyfarkas]

I have cll and was in watch and wait for 2 years and that is not better. I had 2 years of stress. Once it progressed and my white count was very high I went into 6 months chemo. I could have stopped after 4 months but I wanted full treatment. I also never had a bone marrow test just lymph removal biopsy. I like how my oncologist handled it and still like him .

[@mattdonna9677]

CLL starts in the bone marrow so the test would be pointless.☹️

[@celestialcircledance]

Sadly I don't think it's about deserving but affording for a lot of people and things like dealing with insurance and transportation can be big barriers . I like what you said about CLL being aggressive but science being aggressive to counter it and I'm glad you hung in there !

[@janmayer3275]

I am a 75 year old male with stage 3 non Hodgkin’s Lymphoma. I am looking for an appropriate support group. Any ideas or suggestions would be appreciated

[@badbarry5401]

Non-hodgkins lymphoma support

[@ThePatientStory]

So sorry we missed this! The Leukemia & Lymphoma Society has a great peer to peer resource: www.lls.org/support-resources/peer-peer-support

[@seahorse2]

CLL Support group on Facebook

[@cathibarker3942]

I go to Dr. Kommor in Louisville. He is a cll specialist.

[@FarmallFanatic]

Shes right...find the best

[@Pyrorazon]

I was diagnosed in 2019. Still on w&w. I look forward to treatment. I feel so tired legs so weak.

[@user-qo7zp4pq6x]

I’m still w and w also. I need 11 to 14 hours a day….

[@user-qo7zp4pq6x]

Sleep…

[@lucylu9792]

I have leukemia cll, and it destroyed me mentally. I battle with anxiety and depression every day. I also developed white coat syndrome😢

[@ThePatientStory]

So sorry to hear that! We are thinking about you here at The Patient Story!

[@rebeccaluzira5242]

I have cll for 4years l had chemotherapy, and other medications. Now lam on ibrutinib capsules not bad on me, But very expensive.

[@carlyoung8657]

try cannabis

[@cornyconnie.]

God is trying to get your attention. He is there, with you, patiently waiting for you to reach out to Him! It's going to be OK my friend, you can do this!!! 💪 ❤ 🙏

[@lucylu9792]

@@cornyconnie. 🙏🏼🙏🏼🙏🏼😊

[@tigerspiritjourney]

Here are 10 questions to ask your oncologist BEFORE even considering their "treatment" plan. 1. What causes my cancer? 2. Will your treatment cure my cancer?. 3. If it will not cure it, what can I expect it to do? 4. What will be the Side-Effects of your treatment? 5. How will you treat the Side-Effects? 6. Can your treatment give me cancer? 7. What percentage? 8. How much money will you make from my treatment? 9. How much money will this hospital make from my treatment? 10. Will you give me the names of 5 patients you have treated with this kind of cancer 5 or more years ago? I want to ask them what their experience has been... If your oncologist cannot or WILL NOT answer these pro-active, absolutely imperative questions, fire them, and walk out the door.

[@sensimania]

What difference does it make finding out how much the doctor/hospital earns from the treatment?

[@tigerspiritjourney]

@@sensimania Because cancer is a multi-BILLION dollar business in the USA alone, and is expected to reach over 200 BILLION PROFIT next year. Most new drugs for cancer and rare diseases are being priced above $400,000 a year per patient. Some drugs are being priced at $1 million per treatment. And prices continue to soar. It is a well-known fact that oncologists are the only doctors that buy cancer drugs at wholesale cost and sell to patients at marked up prices. Therefore it is an ethical question, and a potential conflict of interest problem. Many wonderful oncologists put patients before profits, but many, many more are in it for the money, and under pressure to have to show monetary annual results to hospital share-holders. It's a BUSINESS. So when a cancer patient asks the oncologist those 2 questions, IF the oncologist answers or HOW he/she answers these 2 questions would indicate immediately if working with this oncologist will have the PATIENT'S best interests at the forefront, or should they walk out the door immediately. Big pharma will never ever allow a cure. They do not create cures, they create customers. And if an oncologist is profiting from cancer treatments they administer to their patients, and choose a particular kind of chemotherapy , I want to know if it is chosen because it has a good chance to be effective for a particular cancer, or because the oncologist is in the pocket of a particular pharmaceutical company promoting the chemo-therapy because it is most profitable. In this situation , asking these 2 questions direct face-to-face to my oncologist, his or her REACTION to those questions are VERY important. And, if the oncologist refuses to answer, then I run for the hills!! Embarking on the most difficult journey of one's life, the honesty, integrity, openness, having up-to-date knowledge, telling the truth, without arrogance and a fragile ego are THE MOST important factors a cancer patient could EVER need, and it is up to the patient to investigate and question EVERTHING. Unfortunately this must be the reality for each and every patient who sets foot in a doctor's office in a world of " medicine-for-profit".

[@inharmsway1965]

HIPAA will allow them to give out patient names?

[@mattdonna9677]

​@@inharmsway1965NOPE.

[@CraftEccentricity]

@@sensimania Everything if they charge 24,000% above cost. It could be cheaper to get on a plane, fly to Europe, and pay for your treatment there.

[@k9khodi363]

2:35 "I can't, I don't have time." 😂😅

[@divinerakimocala]

It amazes me how doctors can become so numb to the point that they have no human compassion.

[@paolocardinali3951]

good doctors never become numb... just find someone else!

[@user-cx6cm1yy8q]

I was told by my Dr that I had leukemia 8 years ago but I still do t feel sick until about 5 months ago stomic hurts and hard to use the bathroom all kinds of things the list goes on and I'm a single father of two wonderful kids and the mother left us over 8 years ago and started a whole new family dnt pay child support or anything or even see them I'm just scared of leaving them alone I work 6 days aweek started to get to me now idk what to do I have to figure something out to stay for them they are my world ill work every day even when I'm sick, no matter what

[@fern8580]

✔Emotional testimony is good, but we would like rational elements : how many "white blood cells? what was his blood pressure,? the number of his heartbeats? finally as many concrete numerical elements within the reach of the patient in 2023 !

[@splash6427]

🙏 ❤️ 🙏

[@kimjohnson325]

I have questions but no one will answer them and the more I look on line

[@ThePatientStory]

We would love to hear your questions! If you sign up here: www.thepatientstory.com/newsletter/ we can get a better idea of what your looking for and help you answer any questions!

[@davewagner5408]

I will gladly answer any questions I can. I'm a survivor,3 years in remission.

[@kimjohnson325]

@@davewagner5408 great and thank you,ok here it is I have positive CD marks and no one will tell me what to look for cd3, cd5 cd20 cd79a cd23 and pax5 Bcl2,I have been told not to worry about it by a doctor so can you help

[@kimjohnson325]

@@davewagner5408 thank you,will here it goes I have positive CD marks cd3 cd5 cd20 cd79a cd23 and pax5 Bcl2 so what to look for

[@davewagner5408]

I'm not sure what those numbers mean,Kim. My oncologist told me I had,CLL and SLL. The only other thing I remember was she told me I was a deletion 13,which was better than deletion 17. I can't explain what it means exactly,but it was something to do with the genetics of the cancer cells. I agreed to immunotherapy,a form of chemotherapy that helps your body kill the cancer cells itself. I had 10 infusions of Obinatuzomab,excuse any wrong spelling,and one year is oral Venetoclax. 4 pills,once a day. It worked wonders for me. My wbc was 58000 when diagnosed and with steroids it was brought down to 20000. Then the chemo reduced it to 6000 after one infusion. It's not been above 8000 since. And I felt pretty good throughout the whole thing. Other than being very tired. Never lost hair and wasn't sick one time. Don't be scared of immunotherapy. I don't know where you live,but I'm in Pennsylvania,Milton Hershey medical center treated ne,the doctor was great. Hope this helps. Please ask if I can answer anything else for you. I'm happy to help. Good luck

[@michelles9897]

🤍

[@cassandrabeaudoin260]

Definitely the right decision to see a different Dr. Claims to be the 'local expert' but can't answer basic questions on the treatment plan? Yeeesh...

[@amandawhite9527]

Red flag doctor - so terrible! Lesson to listen to your instinct and advocate for yourself! So sorry you had this experience