I am a 13.5yr W& W CLL Leukemia Survivor. In that time I have lost weight 340->250, gone 100% Plantbased 50% RAW (dehydrated foods to keep in the enzymes) Exercise Daily, even teach a 1hr Fitness Class twice per week. I have started using supplements to improve my immune system & attempt to increase my platelets. But I do see the trend, Hgb 10-11.7, just dropped to 9.8, WBC 76-86, Platelets 74-92. I have energy but must divide my workload over days to complete. I have experienced 2 Sinus Infections requiring antibiotics in 6 months. My Oncologist is trying to bully me into Targeted Therapy Trials & I have seen too much suffering with Cancer Treatments in my personal & professional life as an RN over 31yrs. I just don't want to live the rest of my life feeling worst. I feel as though I am managing well, retired, empty nester & just doing Health Events. I get all the side effects from medication even though most of you here do so well. Am I being a baby? Thank you in advance for your support & testimonies, it really helps.
I don't want to start treatment ever, however ... - CLL Support
I don't want to start treatment ever, however I know that I probably will at some point.
I can certainly understand your hesitation. Since many of us are way over 50. We have a good memory of what visiting the oncologist meant years ago. Treatments were quite frankly horrendous way back when.
Fast forward to today, targeted treatments are pretty darn amazing. There are a multitude of great options now. I am one week into Obinutuzumab and Venetoclax time limited regimen.
1 week and swollen lymph nodes are almost gone. Spleen is reduced in size. Skin rashes and bad intching are gone ETC ETC.
I like where I am headed now. Way better and hopeful than letting CLL run the show.
All the Best!
That sounds amazing & so hopefully 🎉
I will share with you what my CLL Doc told me at a clinic visit yesterday post infusion blood draw.She was palpatating my lymph nodes, spleen etc. As she was doing that, I was saying to her how amazing it is for them to shrink so quickly.
She said, " I love treating lymphoma patients as these new treatments produce such quick results, which is very satisfying to see".
Oncology has changed, She is basically telling me it has become a happy business. Which is a wild change from decades past.
Now that’s Mind Blowing🤯 Well if that is true then its a Wonderful New Day for us all. Hallelujah Praise The LORD🙏🏾🙏🏾🙏🏾 Thank you for sharing🙌🏾
I think you’ve done brilliantly well so far Vera with a long period on W&W which you’ve used to improve your health. However I think you’re allowing your experience of cancer treatment on perhaps more solid tumour cancer patients to affect your decision. Targeted treatment for CLL can be very different with much less impact. Many of us even continue to work throughout treatment. Yes there can be side effects but there’s no reason they have to be debilitating. You won’t lose your hair for instance and it isn’t chemo which is being suggested. I’ve had treatment on a clinical trial of Ibrutinib & Venetoclax and know only too well the difference between my experience and those of relatives who’ve been treated for stomach cancer and breast cancer.
You’ll know as a RN how serious low haemoglobin and the effect of anemia can be especially on the heart. Low platelets are also a bleeding risk and you don’t want to go into treatment too depleted.
There’s no reason CLL treatment equates with suffering and I’d urge you to reconsider your decision after researching effects more thoroughly.
Best wishes,
Newdawn
Thank you for the compliment & the testimony
Congratulations on such a large improvement in your health, eating plan, and exercise. It’s the hardest to get started and you’re already over that hump.
As to treatment, I have two comments. 1) You could get a 2nd opinion on whether treatment is warranted at this time. 2) The targeted treatments are not as harsh as chemo for other cancers for many people. Because there are multiple options now for treatment, and more in the pipeline, it may not be necessary or advisable to wait until you really, really need treatment. Your platelet and Hb levels are trending in the wrong direction. When you really, really need treatment you could suffer more side effects because your body will be more stressed.
I am not medically trained, just a mom with five kids, a daughter who cared for her elderly parents, and a CLL patient as well. I feel much better after starting treatment.
If you decide to start treatment, trials can be attractive depending on your locale, health insurance, and the specifics of your CLL presentation.
I did agree to participate in a trial for Pirtobrutinib vs Ibrutinib. Fortunately I was assigned to the Pirtobrutinib arm where the side effects have been minimal and the improvements wonderful. It takes time to get started on treatment, in a trial especially. So factor that into your plans.
I found the bone marrow biopsy to not be painful. To be honest, the CT scan with IV and oral contrast was worse than the bone marrow biopsy.
Ultimately it is up to you. I wish you the best whatever you decide.
Patti
Yes I do want to go in strong, stay strong & come out strong. Feeling Better is very attractive & honestly I never considered feeling better. I was busy trying to avoid more pain🤦🏽♀️ Thanks for the whole new concept🙏🏾
No your not being a baby. Treatment is scary when you don' t know how you will tolerate it. I am on my first treatment of O &V and I was terrified. Now I am so thankful to how good I feel. I am one of those that don't get much for side effects. It has done nothing but make me realize how unwell I felt before treatment. My energy is higher, my mind is clearer and unfortunately my appetite is 110% back. I gotta work on that. I have gained 7lbs since starting in October. Now I am finished with the infusions and just taking my Venclexta pills with dinner every evening. Nobody could have convinced me cancer treatment could be so easy and non invasive, but hear I am hoping to ease another's fears. I currently managed to get COVID and that hasn't even been an issues. I'm on day 5 and hoping I stay symptom free.
Wow, thanks for understanding my fears. Cancer Treatment EASY, another new concept🧐🤨🤔
Great to read all that you've done for your health. I admire that, and hope to strive to do that kind of care too. You are doing well to listen to your body. Treatment took several years for me but it kept me alive. I listened to my body too and advocated when to go off meds since I felt over-medicated. Continue to listen to your body and when to medicate and when to remove medication. Also listen to your doctor's recommendations on when you do need treatment when you make your decisions, and timing treatment will give you optimal good results and put important blood test numbers within normal ranges.
Yes thank you, I am scared but I think its time. The pushy doctor will be happy & I better be too🫣
Throughout your decision-making, your feedback, needs, and experience is important too, not just the tests and doctor opinion. You've got a lot to weigh on which way to go and options. It's going to be challenging for you, yet since you have a good self care routine I'd hope you're at your strongest possible under the circumstances. Treatment can be rough and bring fatigue, weakness etc as you know. Whatever you choose, I wish you success.
Dont be scared. It is sad to need treatment but its nothing like the treatment that was available in the past. Who would have known that treatments would have improved at such a rate and without the side effects of old. Good luck, Anne uk
Thanks, its a new day for CLL🙏🏾
I can see how your *previous experience* with cancer patients has colored your perception of "cancer treatment". As a former oncology pharmacist diagnosed in 2011, I too had some of this, and it was based on my "previous experience."
However, we have to remember our experience was when standard chemotherapeutic agents were virtually the only option. There were no targeted treatments. All the drugs could severly damage bone marrow, sometimes irreparably. And irrationally, I did not want to lose my hair. I was thinking more about hair loss, than *death.*!
Treatments have changed. Do some of us have toxic side effects that are difficult? Yes. Is it more or less guaranteed like it was with standard chemotherapeutic agents? No. Some have no effects, some have worse effects, some react to one agent but not another. This is a different era in treatment.
I joined this group mmm 6 years ago, when my 3rd treatment was giving me what I was convinced were drug related side effects, which my hem-onc at the time tried to tell me were not. People here assured me it was not in my head, that the drug did indeed cause these problems in at least some of them.
And since then, I have noted there are a number of folk who have commented "I wish I had started treatment sooner, instead of waiting until the last possible moment." I have always been firmly in the "treat before it completely takes over" camp, having awful effects from the CLL growth (which is unusual, so I have a different perspective). Many people who have undergone the more traditional slow decline, may be hesitant to start treatment. We do understand the fears behind "starting treatment." There are risks, and we want to deny we are even ill. But since a few years ago, when there was discussion about "please share EVERYTHING related to your treatments, we want to see good experiences as well as bad ones" a number of people have commented in retrospect, they wished they had started sooner. They hadn't realized how much their life was impacted until they experienced how much better their treatment made them feel.
Since you are convinced you will have side effects from the meds, you probably will. The placebo effect is about 30% as I recall. But my experience has been, awful side effects to one thing do not automatically equal awful effects to another, even within the same drug class. Plus, a good specialist or researcher (one reason to do a trial of even approved therapy) nowadays is adjusting the dose based on patient specific side effects. If you onc is trying to get you into a trial, perhaps one reason is to make sure you get more individualized therapy. As opposed to, say, a doc who is just going to follow the package insert directions by golly, regardless of whether the patient seems to be sensitive to the med and doesn't *need* the "full dose" to successfully treat the CLL. I am told Dr. Flinn in Nashville estimates about half his patients are not taking the full 400mg Venclexta dose. I know my CLL Specialist Dr. Burke will titrate doses based on patient response. I am sure others do as well. If you haven't checked out the local support group in your area from CLLSociety.org, consider doing so. Others there will tell you what docs in your area are rigid, who is flexible, what their practice style is.
With a hemoglobin below 10 and you wanting to continue physical activity, you are at a higher risk for depriving oxygen from internal organs with all the skeletal muscle activity. Please consider treating sooner rather than later. You may need to pause your activity a bit, but, it's better than slowly wasting away. A shorter interruption of your current lifestyle means you can get back to it sooner!
Yes, re venclexta I felt over-medicated and blood tests showed that too, my dose was adjusted down from 400 mg to 200mg until last November when I was taken off altogether due to great results.
You hit some very valid points. My two close dear friends had Lung & Uterine Cancer they were in denial & at stage 4 I watched them tortured & they died anyway. So yes this does not have to be a death sentence. I heard its ‘the best cancer’ to have & I didn’t think about it again. I will let him know at my May appt unless the numbers look extra marvelous. So maybe by July after the 3 Health Fairs obligations I can start & isolate. Thank you 🙏🏾
See the specialist and pick a treatment, get any insurance approval, apply for copay or other assistance, in this interim period so when you are ready, you can simply start. It took me 4 months from "I need/want treatment" to get everything lined up. I chose a study, and there was preliminary stuff before actually getting the drug into my body to halt the growth. And one person here recently had their insurance take mmm 3 weeks to approve the med, after she wanted to start, she waited until the last possible minute. Insurance wanted the doc to prescribe something else to start, and were arguing with her world renowned CLL Specialist! And she definitely felt much sicker into that 3 week interim, and it messed up a family holiday. I've also seen a neighbor with CLL go from "stable blood work" for over 6 years, starting to creep down a few months, then one week after routine blood testing (which showed nothing urgent) sitting in an ER getting a platelet transfusion, and then rushed treatment. He is not happy it went down like that, and wished he had taken my advice to "plan the treatment" ahead of time.
Another person I know, has picked a trial, and is planning to start mid summer after a European trip. In the event something urgent crops up ahead of time, he has his ducks already lined up.
Yes I heard you guys loud & clear. I’ve contacted my doctor & will see him in 2 weeks to get things moving along. Feeling better is my only focus 🎉🎉🎉
Hello CoachVera55
I agree with SofiaDeo, take this time to plan your treatment options. You and your doctor know your body better than anyone, we are all different. "Don't start treatment to soon as each time to treat will get shorter and shorter". "Don't wait to long for treatment as road back can be very rough".
Such a slippery slope but my bloodwork has slowly declined until Covid hit & everything got worst faster. I am ready, willing & able now just praying it all goes well🤦🏽♀️
your last statement ‘a shorter interruption of your current lifestyle means you can get back to it sooner’ will stay with me as I continue my O&V treatment. Thank you x
Thank you SofiaDeo. Excellent advice based on hard won experience. I was especially relating to the hair comment! Just at the point of diagnosis, when the surgeon is talking urgent referral to hematology & they’ll make decisions about chemo and the thing I’m freaking out about is losing my hair … chemo I’ll deal with, the Reaper’s a lousy dancer with no sense of timing or rhythm, but my HAIR, what about the hair!!! 😂
Life is absurd but I am so grateful for this community and all the lovely people here. xo
Yes me too
If you do decide to start treatment, be sure to weigh the side effect profiles of each of the targeted medications with your risk factors for them. For example, if you have any history of cardiac symptoms or hypertension then a pirtubrutinib clinical trial or else a prescription of zanubrutinib is wiser than acalabrutinib or ibrutinib; and venetoclax is a good choice. Read the package inserts for any medications you consider.
It is better to read about choices now, instead of being in a situation where your platelets or H&H get so low, etc. that you need to make a more immediate choice. CD 20 medications such as obinutuzumab or rituximab offer rapid CLL problem improvements but can deplete your B cells, making vaccinations pretty ineffective for one to two years, so that is a consideration.
Yes I hope Zanubrutinib is available for me & tolerated well…
Hello Coach Vera. With your platelets and hemoglobin dropping to dangerous levels, it sounds like your doctor is trying to save your life by getting you to treatment.
Not all cancer therapies are created equal. The majority of people starting on Cll immunotherapy treatments tolerate them very well. For those who don’t tolerate one treatment, there are other options. Treatment for Cll today can be as simple as one oral pill a day. There are lots of people who have very few side effects from Cll therapy, if any.
You are very young and the fact you have been in watch and wait so long suggests your Cll might not be an aggressive version. Your platelets and hemoglobin are getting into a danger zone and that might be why your doctor has some sense of urgency. With your RN background, you must have the experience to know how to seek a second opinion if you are questioning your doctors advice.
Good luck to you. I hope you will consider that one can have treatment for Cll and still have a good quality of life. Im in my seventh year of treatment and still enjoy travel, golf and many other activities.
That is what I need to hear, a quality life during & after treatment. I get when you say young, you mean for having this disease since I was 43yrs young. My Mom was a 30yr Breast Cancer Survivor & had no radiation/chemo or chemo pill. She did have a radical mastectomy with no lymph edema. I didn’t get 30yrs but hopefully I won’t need surgery. Thank you for your thoughts…
Hi
I , thankfully, didn't do W&w as diagnosed at stage 4 aged 56, Nov 2020 straight to O + I, no issues and in umrd with 250 days. I am on daily acalabrutinib and live a full life pre covid pre cll life style as a full time dad to my 5 and 3 Yr olds.
My hubby is the one here with CLL. He was w&w for 6 years and began v+o last year. He missed exactly 1 day of work due to not feeling well and worked from home due to travel times on infusion days. He saw his lymph nodes decrease in size the very first day and went thru a couple weeks of decreased hunger and weight loss. He has no other side effects that I can recall. He always has suffered from sinus issues and still does ...these are FAR more intrusive to his life and well being than his cancer treatment. Our hope is that once he has completed treatment he will be better able to fight the sinus problem, but we shall see. With 20-20 backwards vision, we would have wished to realize how much the cll was affecting his daily life, how "easy" it was to treat and might have started a year earlier.
I think that I am prone to Sinus Infections too. Yes I hear that its far better than what I’ve seen & getting sort of excited about feeling better🙏🏾
I really struggled with having to have treatment. I’ve always looked after my health and hardly ever took medication for anything. I saw a wonderful haematology phycologist who really helped me get to the bottom of my fears and I was able to move forward and except the treatment. I decided whilst I was feeling physically strong (even though my bloods didn’t show that) that it was the best time to be having treatment. I didn’t want to be going through it when I was feeling much weaker, the anaemia was causing me more issues. I’m just at the beginning of o&v so it’s early days for me but already my body is showing a good response, I wish this for you too.
Awwwww thank you & smooth sailing to you too.
I have been on w & w for 5 years and do a lot of exercise. I was close to being a vegetarian because I was an organic vegetable grower. However, my iron levels plummeted. After prescribed iron tablets for 6 months, I returned to a varied diet including regular red meat, liver and black pudding. My iron levels are stable at 143 and platelets good. I abandoned all supplements except vitimin D. Is there a danger of having to undergo treatment simply because of your diet?
I really don’t know but my friend that died 3 weeks ago was saying something about no raw veggies during Chemo.
Vera,
I hope I can offer you a some encouragement:
In 1995/6 I underwent an autologous stem cell transplant (a treatment no longer considered). I can only describe it as brutal.
In 2007 I was treated with FC (pretty standard chemo) which I tolerated reasonably well but it wasn't pleasant.
From September 2022 I've been on the targeted treatments of rituximab and venetoclax and I can only describe them as a walk in the park compared with what I've been through previously. I'm doing two 30 minute dog walks per day, two swims of around a mile per week and I'm back on the squash court as often as I can make time.
The new treatments are great and you should feel much than you do at the moment within weeks are starting treatment.
Jacques
Thank you I do feel the encouragement on this site so I am marching forward…
Hi CoachVera, I hate to hear of people being bullied by their doctors as it has happened to me in the past. I’m also on watch & wait and my Oncologist recently suggested targeted therapy for me. I was extremely concerned about the side effects. I have other conditions which I have posted about recently on here - partial sight from birth and blind in one eye, and blurred hazy vision in the other eye. Eye doctors are not clear with me which of my eye conditions is currently causing the hazy vision. My mobility is poor and I walk with crutches.
My white cell count was measured in late February as 63.6 and Harmaglobin was slightly below the normal range for women. I was struggling to deal with a urine infection at the time, and this put my monocyte count up.
Fortunately my Haematologist is not bullying me to accept treatment. I will speak to him again by telephone consultation in early May and I will get my blood taken and request results a few days before the Consultation so I am prepared. I expect my white cell count to go down now I’m clear of infection.
Re: my energy levels, I have slowed down a lot since I left work in 2016 and I stopped going to the gym at the start of the pandemic, so my general level of fitness has declined due to stopping the gym. I have been given a programme of exercise by a Neuro physiotherapist with a view to restarting the gym soon. I maintain that my physical disabilities of partial sight and mobility impairment impact more on my day to day life than CLL.
Regarding your situation I would not want to advise you to start or not start treatment. Do not think of yourself as being a ‘baby’ for not wanting the side effects. I don’t want them either.
Personally I’m finding that meditation and being connected with natural healers and a vibrant spiritual community helps my mental state and helps me return to a positive state of mind, e.g. feeling grateful for the life that I have and being in tune with what my body and spirit needs on any given day. Also the ability to access the joy in being alive is very important.
I wish you the best.
Thank you so much for your candor. I believe that Holistic Care must be the foundation too. I am still drinking my 1.5liters of Lemon Water, 16oz Cold Pressed Juice & my healing Herb Teas with Supplements. Acalabrutinib 1/2 dose is a good fit right now. I handled the headaches & even the muscle aches are more tolerable. I am actually optimistic nowadays but it’s definitely a personal. choice. #GODSPEED for us both🙏🏾🙏🏾🙏🏾
I removed the comment from here and sent you a PM. Let's hope the link will work in the message.
I like your honesty, but I am a little surprised that you being an RN have reservations about the new targeted cancer drugs. You are doing all the right things by living a healthy lifestyle, but that is not going to treat your medical condition, as you know. You remind me of myself when I went 10 years with bad, painful knees. I was told over and over by friends and docs that they were bone-on-bone and I should have them replaced. I delayed and delayed until they hurt so much that I gave in and had the surgeries. I can't believe I went all those years in pain when I now have zero pain and can walk for hours. Be thankful that you have these amazing new drugs that can save your life. Go get your treatment (mine was Obinutuzumab and Venclexta)... with your healthy lifestyle you should outlive all of us!
If I can be honest, I was convinced that I would be the 30% that did not ever need treatment. So I stayed deliberately ignorant about CLL Treatments. I did not use my W&W Time to even think about CLL. I had 2 Total Knee Replacements myself & put them off until the last minute. I probably will never just jump on a bandwagon but that is one of my idiosyncrasies 🤷🏽♀️
I’m on the MAJic trial, 5 weeks into it and I am feeling awesome, the ramp up was making me feel tired, and headaches for the first few weeks, but now I feel better like I did a few years before I was diagnosed.
AMEN, better health is a true gift!!! GOD BLESS
CoachVera you sound like you are very proactive with your health. You have coached yourself and came out with a trophy. You are now in the locker room giving team (yourself) the TALK!! Being smart you have consulted the rest of the coaches,(this community). One of your co coaches is pushing hard with his opinions.(the Doctor ).Listen, question, and rally the team (you) with your decision. You are the head coach.
My problem is exactly the opposite of yours. My husband had a different form of leukemia waited probably too long, and ended up passing away. So I was very anxious to start treatment because of my circumstances. We all have personal baggage that we have to evaluate, that make our decisions difficult. I am not sorry that I started treatment a little early. I am now uMRD. I had some rough moments, but it was well worth it.
Thank you for that analogy & again y’all hit it on the head, he made me feel powerless & stupid for waiting but then what guarantees are there? Yes I have to analyze all data & make an informed decision. Also the thought of living & not preparing to die is giving me peace of mind🙌🏾 So sorry for your loss🙏🏾
Hello CoachVera55
The unknown is always scary, and you are not an exception. I can honestly say that having gone through B+R treatment and now undergoing V&O treatment, life is better than before treatments. I also think the treatments are getting better each time. V&O treatment has restored my energy levels with lack of any significant side effects. I actually feel like a normal person except for being more immune compromised. Blessing going forward.
Yes the unknown is scary but its like watching a lion gain more ground, Insee the numbers getting worst despite my efforts. I may have slowed it down but now I want to kill it b4 it kills me. Thanks for your positive testimony, GODSPEED 🙏🏾
Hi CoachVera.
Treatments have become so exciting over the last few years. Your watch and wait years have protected you from having to have any of the old chemotherapies you are so used to.
I feel so grateful to be on V and O! It was only passed for people in the UK in my position in December 2020!
Neil has always said on here that it’s mportant to start treatment when Hb starts to drop below 10, and platelets drop. You are at your peak health. You have been so disciplined working on your health. However you are getting to the stage where you could suddenly get more ill, and, as everyone has said, it is good to find the sweet spot for treatment.
Everyone’s blood count and platelets drop a little with treatment but within 2 weeks mine had started to reverse. My spleen symptoms started to disappear within a week.
These new targeted treatments are amazing. No hair loss, and avoiding most of the toxic effects of old chemo. My hair has thinned out a bit, but everyone smiles when I tell them because I’ve got so much left!
You have timed it perfectly! Access to the targeted treatment, and having got your body as fit as you can! Well done and good luck!
Vera, You've had lots of excellent feedback to your question. I'm going to encourage you to start treatment sooner, rather than later, based on my personal experience, where I had very similar platelet counts and better haemoglobin counts than you. I ended up spending 5 weeks in hospital and needing a couple of packed red blood cell transfusions. PerlPink and cajunjeff have said it well; your "bullying doctor" is trying to save your life and "you are getting to the stage where you could suddenly get more ill, and, as everyone has said, it is good to find the sweet spot for treatment".
The problem your body is facing right now, is that based on your platelet and haemoglobin counts, your bone marrow is very, very near the point of running out of capacity due to CLL infiltration. What's left, supplying the billions of platelets, red and white blood cells you need each day to stay alive, is working extra hard right now. When you start treatment, you would be very unusual to not experience further falls in blood counts - and as a nurse you should know how life threatening that can be. We can transfuse red blood cells, which last a good amount of time and we can transfuse platelets, but they only last 4 days before you need your next infusion, so I hope you have a common blood type. Please don't wait until your May appointment. Please......just.....don't.
You can read my experiences by selecting my avatar and reading through my bio. I started with the SLL presentation before moving to the CLL presentation about 2 years after my diagnosis, so I had a swollen spleen and nodes and bone marrow 54% infiltrated at diagnosis. After 11 years in watch and wait, I experienced 2 months of delay before starting treatment which was beyond my control. In retrospect, I'm pretty sure I would have had a much easier start to treatment if I hadn't faced that delay. Ironically, because I was fit, I didn't appreciate how close my bone marrow was to complete failure from lack of capacity. When you tune your body as you have done, I reckon that you just don't become aware of how close you are to running out of capacity unless you really push yourself. If you are less fit, I reckon you notice become puffed out earlier. I had some warning signs that I hadn't appreciated, because this was my first experience of reaching the point of running out of the optimal treatment window. Please don't make the same mistake.
Neil
Okay thanks, not what I want to hear but I am getting mentally ready & that is why I posed the question. I will reach out to the doctor today🥺😢😭
Thank you so much, from your mouth to GOD’s ear🙏🏾🙏🏾🙏🏾
Awwww thank you, glory to GOD🙌🏾
When I was diagnosed 17 and a half years ago my consultant said to me I hope you never need treatment because the side effects of it will be worse than the CLL unfortunately he has been proven right my treatment with Venetoclax and Obinutuzumab started almost a year ago
Obinutuzumab had to be stopped because of the severe side effect . I have continued with Venetoclax at a reduced dose of 200mg as the maximum 400mg was not recommended because it would interfere with my blood pressure medication .
I had so many problems and still suffering I have three weeks left to finish the last cycle of Venetoclax and I am hoping that it has worked and will put me in remission don’t we all undergo all this to achieve the final results and be told that we are now free of it.
I hope Your healthy and active lifestyle will put you in a better position than most and you won’t have the same problems as me and others .
I wish you the best of luck with what ever you decide .
🙏❤️🙏
I am so sorry for your complications but really appreciate your candor. I know we are more fortunate than past CLL Survivors but none of this is easy. LORD have MERCY🙏🏾🙏🏾🙏🏾
Absolutely sound advise & I thank you. I have decided to try treatment while I am still strong & to see whats the best fit for me. The decision alone took me out of preparing to die to be excited about living. May GOD protect & save us all🙏🏾🙏🏾🙏🏾
Do I trust that my onc will choose the best treatment for me, ask for a list of alternatives to research, or resist treatment altogether?
watch and wait (!?)
