CLL Patient Stories: My Chronic Lymphocytic Leukemia First Symptoms & Diagnosis | Tamsin W. (1 of 3)
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- čas přidán 9. 07. 2024
- Tamsin shares her in-depth story of getting diagnosed with CLL or chronic lymphocytic leukemia, starting with a description of her first symptoms (out of breath, dizzy, nausea, fatigue, palpitations). Tamsin also talks about the tests and scans she had to undergo to get the CLL diagnosis, as well as and how she navigated the healthcare system in the UK, advocating for herself along the way,.
Thank you for sharing your story, Tamsin!
Full story & transcript → www.thepatientstory.com/cance...
Videos:
1) CLL First Symptoms & Diagnosis: This Video
2) Treatment Decisions & Getting Through the Depression: Coming Soon
3) CLL Treatment & Side effects: Coming Soon
The interview has only been edited for clarity.
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Contents of the Video:
00:00 - Intro
00:49 - Tell us a little about yourself
02:03 - What were the first symptoms?
03:17 - The timeline of the first symptoms and doctor appointments
04:05 - How did the heart palpitations feel?
05:02 - What were your thoughts throughout the tests?
06: 06: Explanation for the colonoscopy
07:37 - Dealing with uncertainty before diagnosis
08:34 - Appointment with the cardiologist
09:36 - The inexplicable pain from the symptoms
10:18 - Describe the shoulder and groin pain
11:16 - How long did the night sweats last?
11:57 - Explaining the weight loss
13:13 - The blood test that changed everything
16:20 - What was on your mind throughout all of this?
17:22 - Next steps after getting admitted to hospital
18:36 - The day of diagnosis
21:36 - Getting the diagnosis for blood cancer
23:14 - What helped you get through this period of not knowing?
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#thepatientstory #cll #patientstories #cancerstories #cancerpatient #cancersurvivor
We’d love to hear from you: what was the biggest lesson you learned in your own cancer diagnosis? Leave us a comment below 👇
Awesome job! You seem to be a natural at interviewing. Helping her tell her story about this most difficult time in her life, while imparting the information to help others. Do you find Type A personalities are more prone to getting ill in general? I'm a therapist, & I practice energy healing, on myself & others, always thinking about psychology & it's affects on the bodymind, or how the mind affects the body, it's just a theory I have. I hope you are well, Sending Love & Healing
Just listening through some older videos.
Happy New year Stephanie I appreciate all your hard work and all the individual stories I learned so much. ❤
I have a swollen lymph node then another and another so went to doc, had a biopsy and then my chart told me I have cancer! Still working on what kind, it just drags on!
I was diagnosed in 2016. My diagnosis was incidental to a blood test I had for something else. When my CBC came back with a lymphocyte count of 61,800 my doctor sent my CBC result to the consulting hematologist at the regional cancer center. They asked for a repeat CBC and addtional blood work (met panel. etc). The repeat CBC came back with a lymphocyte count of 69,600 so they scheduled me for an appointment with the hematologist/oncologist and ordered a flow cytometry test. The Flow Cytometry result was ready by my appointment. It showed that I had CLL. The hematologist/oncoloist ordered another CBC and a FISH test. My lymphocyte count came back as 89,600 and Fish test came back as Del 13q. Over the next month my lymphocyte count dropped to about 55,000-60,000 which suggested that the initial spike in the lymphocyte count was due to stress. When I was diagnosed on my 64th birthday (not my favorite birthday present) I had never heard of CLL. At that time my knowledge of leukemia was limited to mental pictures of kids in the hospital with terminal leukemia. However, I am a retired chemistry professor so I immediately started researching CLL. I bought a hematology text book and started reading the scientific literature. I also bought a microscope and taught myself to do blood counts using blood smears.
Over the next two years my lymphocte count gradually increased to 140,000. During those two years I researched the approved treatments and decided that I wanted to do Obinutuzumab monotherapy based on the CD20 results for my lymphocytes. I discussed treatment options with my hematoloist/oncologist and told him what I wanted to do. I also told him that I did not intend to take Chlorambucil along with the Obinutuzumab. I was able to convince him to go along with my choice. Starting in March 2018, I had the normal six month Obinutuzumab treatment (monthly infusions) which reduced my lymphocyte count to 600/microliter and those were all T and NK cells. I am now five years and two months past the end of treatment and my CLL has been slowly coming back. As of June 2023 my lymphocyte count has increased to 5,240/microliter with an apparent doubling time of 8.3 months over the past two years. Assuming the doubling time remains the same I will have another Flow cytometry test in about a year and based on the result another FISH test. If my deletion is still 13q and my CD20 abundance on my lymphocytes is still high I will likely opt to repeat the Obinutuzumab monotherapy although I may consider adding a year of Venetoclax. I currently estimate that I will start my second treatment during the second half of 2026 unless my lymphocyte doubling time changes or my platelet count drops below 50 before then.
I have not seen a CLL specialist, preferring to become my own specialist and rely on my local hematologist/oncologist for clinical experience.
Stephanie, you are such a wonderful interviewer. Sympathetic, non-intrusive, never interrupting.
You cannot even begin to imagine how happy it would make me to share a glowing report of my husband’s success story. He not only had CLL but also multiple and recurring skin cancers and bladder cancer, all at the same time. He fought valiantly and somehow maintained his wonderful sense of humor through all of that. But then he suddenly had to be hospitalized with COVID, and he was too weak from all of his cancers that he was unable to fight off the COVID. We lost him in a matter of just a few days. My heart is forever broken.
I'm so sorry for your loss
My Friend, I am so sorry. After battling through all these health crises it feels so unfair, doesn’t it? Like you’ve been betrayed somehow. And yes, your heart will be forever broken but then the scar tissue starts to form and somehow you still keep putting one foot in front of the other. That’s all you need to do, one foot then the other and each step later reveals you have a lion’s heart.
Take care.
With me it was a bit different. I had been in the medical field and with a kidney infection I was told I had Hep. c. I knew that was not so but it took a while to come to a diagnosis of CLL. It has been over 20 years now with chemo 5 times. I am fortunate in the meds worked good. My first white count reading was 190,000 when normal is 4 thousand to 8 thousand. I made up my mind that I would continue having a normal life having a positive attitude. Yes, the chemo is sometimes hard but you move on from it. During my journey I built a log house from 100 year old barns, started flying airplanes again after 40 years and I also live alone with no family in my state. I was not put on any drugs but took a lot of analgesics during that time.
the one thing I might share that was very important to me was living a healthy lifestyle and DIET! I now am eating a very healthy diet, exercise even with not much energy and after much research, I at an older age tend to believe this can be beaten!
What diet are you doing? Thanks
I can really relate, except I had ovarian cancer and the tumor was as big as a football. They did debulking, took out lymph nodes and my cancer did not spread. Doctor said it was a miracle as it came out easy, wasn’t all wrapped in my organs. I said this pray all the way to hospital. They had to med flight me from Alaska to Seattle to University of Washington. Thy name is my healing, O My God, and remembrance of thee is my Remedy. When they brought me to my room there was a beautiful bottle of lotion and across the top it said Remedy. I didn’t have chemo .That was in 2011.
The amount of medical appointments involved in treatment is mind boggling!
Just to get into the diagnosis is overwhelming, and I am the only one in a hurry!
It’s mind boggling how insurance companies restrict the medical professionals from testing, they really do; you almost have to demand they run test and not medicate you on a hunch. I am 57 and about 10 years ago my doctor at Kaiser (since I was 35) called and told me that my white blood count had gradually been elevating over the past 5 years (no other symptoms), she immediately referred me to an oncologist and they ran every test to rule out Cancer (CLL). I am so grateful to her for her care over the past 20 years. Sending love and light 🤍
How high were your wbcs?
Hi there. Yes I’m curious how high yours were. I’m going through this at the moment as well. Not crazy high but slowly gone up over the last couple yrs.
THANK YOU FOR THE INFORMATION, I JUST GOT DIAGNOSED BUT HAVE NO SYMPTOMS , SO FAR.. I HAVE HAD A HIGH LYMPH AND WBC COUNTS READINGS FOR 21 YEARS AND MY PHYSICIANS ASSISANT NEVER THOUGHT IT WAS ANYTHING.......ed in new york
I know just what you mean. I was working full time and running a small business when I was diagnosed with CLL. Talk about being exhausted! It was tough.
Thank you for your story, Tamsin, and I wish you well... You have such a bright inner light. I was diagnosed after experiencing four months of increasing shortness of breath and bilateral pleuritic chest pain. As a retired physician and someone who is not a medical catastrophizer, I assumed it was a viral infection. It got to the point where I couldn't walk my dog. I saw my physician (a friend) for my annual exam and suggested we get a chest x-ray. After the tech finished taking the x-ray, I asked in a very cheeky manner, "Did you find any big gumbas?" She didn't chuckle and led me to a room and said, "Wait here for the doctor." I felt my life spin on a dime. I only thought about how my family would be taken care of.
My scans revealed multiple collapsed areas and fluid around both lungs and bilateral mediastinal lymphadenopathy. Interestingly, my white blood cell count was only minimally elevated. Because I was so sick, I was treated with chemo and targeted immunotherapy, which I didn't tolerate very well...I lost an additional 15 pounds from the chemo. That was just over ten months ago, and despite some unchanged radiological findings, I am feeling back to normal. Let's hope my story ends here! It's very unsettling that the doctors would rather watch the mass in my lung since it is not causing me any symptoms and only treat me if there are. I understand the logic, but emotionally it is difficult to accept. What helps me get through the uncertain and anxiety-provocating times, such as waiting for the results of biopsies, bloodwork, and scans, and also while waiting for the doctor to enter the exam room during an appointment, is to repeat the mantra, "Everything is the same today as it was yesterday, nothing has changed."
I developed every symptom that Tamsin mentioned as well as swollen lymph nodes in my neck directly after the Covid vaccine. As to my knowledge I have not had Covid but it’s been over a year since the vaccine with no sign of improvement. My Dr had said it could take time for symptoms to subside but did order an US of neck. It showed a nodule on thyroid & biopsy on it was benign. Blood work was drawn recently which showed my potassium at 3.3 & ferritin was 7. I was told to take a multivitamin with iron & eat more potassium rich foods. I was also told that if it were to be Lymphoma (which I had brought up due to symptoms) then it would show up in my blood work. Red flags are still up for me but I just keep trusting in my dr.
Excellent interview… going through similar issues right now.? Prayers to you Tasmin 🙏❣️Thank you both for this information!
Stephanie, I just want to say that this channel is amazing and you do such a fantastic job at interviewing/helping facilitate these conversations. You really play a major role in helping these patients tell their story. You really are doing such meaningful work and I just want to say thank you and great job!
Chad, I really appreciate you taking the time to write this and to share your feedback.We rely so much on others wanting to share their stories to help others, so they deserve any "credit,"if you will. This is all I could hope for as the goal is to help lift others out there. Thank you so much! -Stephanie
Thank you a lot for those videos. You help people who watch because of their own experiences with doctors and you help by giving people time and a space to tell their story. Thank you to Tamsi too for telling your story. Stephanie (everyone here just sais Stephanie 😅 so i decided to edit the Dr.away sorry) Im also amazed by your level of empathy we miss more people like you in our society.
This woman’s pure soul just shines through. Thank you for sharing your story. Sending you and your family love, light and prayers❤
Your story is so much like I went through. I have Large T Cell lymphatic leukemia. It was all the feeling you were going through. The feeling you went through I kept to myself . I didn’t know what was going on and how this is going to play out . Thank you for sharing
Stephanie, you do an amazing job with these interviews!
Thank you for sharing, you are very brave and a beautiful lady.
So grateful for this channel.
Lisa, thank you for leaving this feedback - so glad it's been helpful to you. -Stephanie
Tamsin, It is so obvious that you have a gentle, caring and loving spirit. I am holding you in my heart and prayers. This is your time to make sure you are at the very top of your priority list. You matter. You deserve the utmost TLC, self-care and compassion. I gently invite you to take one step, one breath and one moment, at a time. Sensing heartfelt healing hugs your way. 🙏💗
Norma, what lovely words and advice you've offered Tamsin and the rest of us, as well. Thank you! ❤️ Stephanie
Thank you so much lady's.❤
Bless her heart. Get better soon ❤️
Thank you for sharing your story , going tru similar situation , I will ask my doctor for a full blood count blood test .
I was diagnosed with a stage 2b and already in lymph nodes 5 yrs ago , and i was almost devastated if not for my friend and with the help of a herbal doctor. Today I'm strong ,Hear me you can fight this no matter what. Stay strong out there.
Which herbs did you take?
Seems like the blood tests should have been first. They are simple and cheap compared to a colonoscopy or the other major tests she had.
A standard full blood count, doesn't necessarily show cancer.
My sister found out that she had chronic Leukemia right after she delivered my Nephew. She had it for 10 years. She was monitored by U of M in Michigan. This was in December of 1972. They were just starting to do bone marrow transplants at that time. In 1983 she started having problems so she went to Seattle to get a bone marrow transplant but they gave them all so much radiation and that's what killed her. But they can do so much more now a days. I hope you do well.
At the time she was diagnosed they told her that it has disappeared in people. She wasn't that lucky.
My doctor. Suggest they will watch over me within 3months, because of observation, suggest petscan with small amt. Of radiation. Cll b. Lymphoma leukemia. Sll. My testimony is that of the interviewed. Mrs. T. I mean shadowing her story... story story
My doctor. Suggest they will watch over me within 3months, because of observation, suggest petscan with small amt. Of radiation. Cll b. Lymphoma leukemia. Sll. My testimony is that of the interviewed. Mrs. T. I mean shadowing her story... story story
My doctor. Suggest they will watch over me within 3months, because of observation, suggest petscan with small amt. Of radiation. Cll b. Lymphoma leukemia. Sll. My testimony is that of the interviewed. Mrs. T. I mean shadowing her story... story story
Sorry about the duplicates. It wouldn't let me complete, or maybe not sure if what I am doing. Oh but I have a story.
I’m diagnosed also. There’s zero info here about her wbc numbers. That’s the first red flag usually. Her getting bounced around seems like it was not a good diagnosis, seems like her wbc should have sent her to a hematologist immediately.
Agree, Michael. It all sounds a bit of a mess for her. Best wishes.
What was your wbc when you first diagnosed?
@@ta-tt7hv 15
@@mwdrum that's high
White cells can be raised because of infection and viruses.. Lots of other conditions also.. Though why they look for leukemia and lymphoma last is beyond me.. It's like they work up to it instead of ruling it out from the odd.. Better chances of treatment options early on to slow down the progression and getting it into remission..
Hi Stephanie, I am probably telling you something you already know about first sign of anemia (losing blood) the most often cause is bleeding from the bowel hence the colonoscopy. Your show is absolutely terrific and you are a great 👍 interviewer in every respect.
Bonnie, thank you so much for taking the time to leave such wonderful feedback! It really does brighten up my day as my only hope is these incredible people with their stories will help others in some way :). -Stephanie
my twin sister was diagnosed with AML in early July and died 2 weeks later due to complications from the chemotherapy and now as her twin sister as I experience different symptoms of things I feel like I tend to have more chronic symptoms and leukemia does run in my family but you guys have so much more strength than I do I know that I would not be able to do all of the needles and prodding and things that go on.
Oh my goodness, I'm so salty for your loss. That's terrible.
I'm so sorry for your loss 💔
Like you I also dislike needles etc, I had a cancer scare a few months ago & I was more concerned & worried about the various tests than possibly being diagnosed with cancer, this I believe is because I know others that have chosen to take an alternative route & are still here & healthy to tell their story 🙏
For every thing in life there is always an alternative, always do what ever feels best for you 💓
Comprehensive medical studies show that chemotherapy does not extend life expectancy
Max Gerson MD program is very helpful. There is a book Gerson Therapy. Also many videos on CZcams
So sorry for your loss we share the same bc my twin pasted too of colon cancer not has a reaction from chemo due to not catching in time my heart ♥️ felt condolences 💐 I know the pain 😢
@@RK-su4hsGot any links to these "comprehensive medical studies?"
More people in the healthcare setting (I work in it and studied Biomed with a passion for cancer research?) Should definitely keep in mind CLL when someone shows to have persistent or recurring iron deficiency anemia and not always base it upon just diet and or menstrual cycles if the person in particular is a women of pre-menopausal age with light or normal menstruation and not vegan or vegetarian and replenishing the iron stores. Even with all these symptoms. I feel for her. 😢
Most people with CLL are low on magnesium. There are some interesting studies done on the subject that is worth looking into.
Misinformation! There is a limited association between VERY low Mg levels and some cancers - pancreatic, colon - NOT CLL.
I told my Doctor I am concerned because I can only go number two using laxatives or I don't go at all and when I do finally go its just small grey lumps and when I wipe there is blood. He said its probably just irritable bowel syndrome and nothing to worry about. Then I tried to get his attention toward a rash on my left Rib cage and explained how painful and itchy it is and he dismissed it as a soap allergy even though I told him I use Arm and Hammer for laundry and I wanted to show him how the rash was circling around my trunk and how it's also on my back and just happened over night but he was disinterested. The next day I could see in the mirror the extent of my rash and the pattern and they way I have been feeling I know it's Shingles. He ( my doctor) left town for Toronto right after seeing me the other day. The Pharmacist texted my Doctor and told him what has been going on and he Prescribed me Acyclovir over the telephone. Years ago I was 31 and had gotten chicken pox but no spots were showing , so in emergency I was diagnosed with Leukemia and sent home. Very next morning I had chicken pox all over my face and trunk and head and legs, so I went back to the emergency and the same Doctor working there said he was just stumped at how the entire time I had the pox but they were in hiding. He said because I got chicken pox so late in life and a terrible infection with it , that more than likely I will one day develop Shingles and here it is today , the Neuropathic pain is horrific , I actually wondered if I had Leukemia or some other form of blood Cancer. ~~~ God bless
IBS is what they ALWAYS say. My rotting gallbladder was IBS 🤣🤣🤣 if not for my service dog alerting me and my doctor trusting my SD but not me then I would have died
Stephanie I would like to speak to u I have cll for the past 5 years and I'm heading to treatment I see dr. Lamanna at NYC Presbyterian hospital. Are u familiar with cll support group online?
Disappointed that the conversations are being cut off only to have more videos
Hi Stephanie, I was diagnosed with CLL, Stage 2, in early March 2022. Presently I am on target therapy with Imbruvica. The medicine is helping but there are side effects which concerned me. I enjoy your show very much. Preferably I would like to connect with a CLL patient to chat more about this disease. Is this something you can arrange? I reside in Southern CA. Thank you and I look forward to your response!
Go to their online website ! ❤
I'm 58 and just found out I have CLL 3 weeks ago. I have 3 kids and have to fight this as well. I'm also in So Cal and looking for a good place for treatment if needed and dietitian than can help to minimize the cancer and stop it from growing. Any ideas?
Hi I am a chronic lymphocytic leukemia patient. I am battling with this disease since 2022 and after consuming ibrutinib I am feeling fine and doing well but I have one complication. Currently, my bodyweight is reduced profusely. I would be highly obliged if you share and give information about diet. What should I eat and what not.
I am also in so cal. I was just diagnosed last month with cll. How long have you had it? I have not started any treatment yet other than diet change and dr visits to see what stage it is. So that treatment has bad side effects ?
Can you have cll with low lymphocytes ?
One year ago, I was diagnosed chronic lymphocytic leukemia by my attending physician. After all necessary clinical investigation and finding, the attending physician advised to consume capsule ibrutinib daily which I started and I am feeling alright since then. The only complication that I face is bodyweight loss. Please give suggestion about diet that should I take daily.
I am in watch and wait. The red blood count still looks ok and white lymphocytes not high but I am losing weight and cannot regain plus night sweats. Doc wants a pet scan to see if there is anything going wrong in the stomach. Not sure how to handle this issue.
At age 74 years is chemo worth it and surely I will lose more weight through nausea.?
@@lindapage5046 Are you a cll patient. When you were diagnosed. What medicine is going on. Please explain.
Why wasn't a blood test done right away? Why did the doctors take so long to check the blood for abnormalities?
Can you have this with normal blood test and imaging
How is this should be treated
I was dx 8 years ago with no treatment needed thus far.
However, I had a huge panel of labs drawn last Friday, and now my oncdoc has called to have me repeat them on Thursday, a week out from my appointment with him. Now I feel scared! 😱
Amy, please know you are not alone. Thinking of you ❤️ . -Stephanie
@@ThePatientStory Thank you! 🤗
Hi Amy, thinking of you. Holding you in my thoughts, heart and prayers.. 🙏💗
@@bohochic2459 You are so precious, thank you! ~ Amy 💞
@@AMYBIERHAUS - Dear Amy, I have been thinking about you. I am praying everything is okay. 🙏💗💗🙏
What were the blood tests that finally gave her the answer? Please and thank you.
Good question. Wish it was answered.
High blood calcium! That’s what tipped her doctor off that something was wrong. Same happened to my grandfather. He had stage IV lymphoma in his bones.
@@nkimberly33 Thank you for your reply. Appreciate it.
They said my high blood calcium was nothing to be concerned with. But, they are only "practicing"
I got heavy and looked pregnant. Had the sweats, fatigue
Hi i have lymph node in right side of throat with all of symptoms which you mentioned and after taking 7 days of antibiotics now its almost gone but now i have cough , and after 6 days i have MRI, so is it right time to go for Mri or can antibiotic hide the main issue for some time
You should get checked further. I saw an ENT and he did a neck dissection and removed the nodes. Tests confirmed lymphoma. My lump had gone away with antibiotics,but I still had both lymphoma and leukemia. You're not necessarily out of the woods just because the lump went away. Just FYI. And the right treatment can put both in remission,it did for me
Would an mri with contrast show this sort of cancer?
It could show lymph nodes.. A biopsy of the lymph nodes will confirm lymphoma. Bloods can confirm leukemia along with a bone marrow biopsy.
I went through a pet scan and a bone marrow biopsy to see how widespread mine was. Turned out to be stage 4. But infusions and meds helped me to go into remission for over 3 years now.
I magically became allergic to sugar working out and intermittent fasting
Ozone treatment!
May you be blessed with complete healing and cure. Be blessed and healed in Jesus healing name. Amen
Did I heard correctly she had also hyperglycemia?
Hyper calcemia
My WBC was at 13.8k...Is that worth concern?
You're doctor will let you know but WBC doesn't always mean cancer. It could be just a normal infection
But he don' t have an infection, so he means cancer
My wbc was 58000,but I had cancer. You'll need more tests done to know
@@JustmandyD You were right. It was 13.8k due to my diverticulitis flare up. Last blood tests have been 8k and no blood cancer
Rock hard groin and rock hard stomach same
Me to I spent a week pinching squeezing poking rubbing pulling on my stomach and groin the hard balls that were there so many of them were bursting now its not so so hard wonder what that was
Constantly feeling thirsty
Me too not sure why
On and please get to rhe point are writing a novel
Eattong pig tonight