Good evening to you all. I am currently in a state where my anxiety levels are through the roof. i was diagnosed a year ago and have been on W&W ever since. I last met with my consultant back in December at which point he told me that my WBC count was rising rapidly and he said it was time for treatment to start. I persuaded him to wait until after Christmas as I didn’t want anything to impact on my families Christmas celebrations.
I am due to see him again on Wednesday 15th March and fear that again he will want to start something, I don’t know what he has in mind but I’m worried sick. I display no symptoms and I feel pretty good generally. He will as usual give me the results of the blood test that I had last Friday. Do I have to start treatment or is it my choice to wait a while longer to see what happens, although I don’t know what might happen or what to expect, If the WBC continue rising, what is going to happen to me? I am almost 63 yr old and feel so worked up about the whole thing it is making me feel sick with worry. I know many are much worse than I am but if you can offer some advice then please do so. I am based in the UK. Thank you.
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Typhoon770
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Hi Typhoon, I'm so sorry to hear how you are feeling. I can relate to your anxiety like many others on here. Please try to stay calm, go into the appointment with the expectations that your consultant will mention it again. Ask for your last blood test results and also the most recent one. They can print it there and then or email it to you. Ask what the reasons behind them thinking treatment is necessary are and take notes. Take it all in, listen and go home. Think about everything, you can post your blood test results here - there are so many knowledgeable people on here...take it from there.
We won't be able to tell you more without knowing more information.
I would also like to say that I was dreading my w&w appointments, I was so down about the way my numbers were going, I would just cry all the time, I was scared and almost depressed at one point. Since I started treatment in July, I feel so much more in control of my life, so much better and my mental and physical state is 200% better...so I just want you to know it is scary before you start but it doesn't have to feel like that forever. Having said that, I hope you can start when YOU feel it is needed and good for you.
Hated every single WW appointment. Dreaded them. Couldn't sleep the night before, bad mood the following week, etc. I have PTSD so others may have a different experience, but I will say that those appointments drained me. I feel as though the appointments now in treatment, while still draining feel a little easier. I still have the same sleep issues and maybe a little mood drop, but the unknown doesn't quite feel so scary if that makes sense.
I feel that you are afraid of the unknown. If it wasnt for this site I would not know as much as I do. I am happy with the haematology dept of my hospital.Your appointment is a chance to ask questions. You need to ask them to explain your blood results and the reason why they feel you need treatment.
Ask about the treatment they want you to have and what to expect. Treatment for cll is not dreadful. I have had cll for a long time and been treated twice.
Ask if there is someone you can talk to about your treatment and anxiety. They will put your mind at rest.
If you post when you know more you will get support from others.
Typhoon, I got diagnosed about 7 years ago when I was 63 yrs old. I was in watch and wait for two years before starting treatment, My treatment this far has been oral immunotherapy drugs, no chemo.
Since my diagnosis I have travelled to Europe, the Netherlands, Norway and most recently to the Northwest territory in the US along the route Lewis and Clark took. I also got to visit my son who was in school in Argentina.
I worked five years with Cll before retiring a couple years ago Today I had routine blood labs at 8 am, took an online Spanish class with my tutor from Mexico (I promised myself to learn a second language when I retired) and played 18 holes of golf. Next month I’ll be in New Orleans for my sons wedding.
Along the way I have had various complications with my Cll, some that scared me, all have been manageable. I didn’t think I would make 7 years at diagnosis, right now I have no reason to believe I won’t make another seven yrs. I’m oddly at peace if I don’t, maybe if I get sick and the grim reaper is knocking, I’ll be less at peace. Father Time is undefeated though, it’s not like people without illness win the game.
I did have the same type of anxiety you describe for the first couple years. Why me? How long have I got? Will I get real sick? Yada, yada, yada. For me all the anxiety did was make my first couple yrs of Cll worse than it needed to be. The odds of anyone newly diagnosed with Cll dying from it in the first couple years are pretty close to zero I would guess.
I hope you are able to find peace with your diagnosis. The best remedy for me ended up just staying busy and enjoying life. It has been a roller coaster of sorts, but I find most all my friends my age have some sort of roller coaster of their own they live with. I don’t know how it will be for you, but I think many, if not most, of us with Cll start with anxiety and eventually find some more peace with acceptance.
so well said. We eventually find peace and learn to continue living life. I am planning a trip to England this summer to visit the site where my Dad was stationed during WWII. I haven’t thought about my CLL once while planning this trip with my kids and grandkids.
I’m sorry to say I’m a veteran of this disease so I’m familiar with treatment and the roller coaster emotions you are experiencing presently. What I can assure you is it isn’t nearly as bad as you envision. I was diagnosed in Oct of 2017 and went into BR treatment the following May. Six months of that and then four years of watch and wait and for the last four months I’ve been on V + O treatment. I’ve got two more O infusions to go and then V daily for at least another 9-months and maybe 21-months depending on how much CLL remains in my bones. I expect to get several years of remission and I plan to enjoy them! A few observations I’d like to make:
1) Ive never been in any kind of pain in the last 5+ years. I’ve had countless blood tests, a Picc line, multiple CT scans, a Pet scan, 13 infusions and 4 BMBs. Every test/procedure has been painless. Honest!
2) My quality of life has been high. People have no idea I’m sick if I don’t tell them.
3) Please don’t delay treatment. Both of my treatments started a little later than they should have for scheduling reasons and it makes it worse. I had four units of blood the first time and 2 the second time because of the delays. Start a little early! Don’t delay. Trust me on this point. Delay only makes it harder on your body.
4) I’m guessing your first treatment will be ibrutinib or Acalabrutinib. It’s a pill you take daily. It isn’t a big deal.
5) Enjoy life. It goes quickly enough. Don't waste precious time worrying about things that you can’t control and most importantly that won’t be anywhere near as bad as you expect.
In your earlier post, "Help me to understand please" , healthunlocked.com/cllsuppo.... you shared your blood tests, which weren't of any particular concern other than perhaps your lymphocyte count may have been climbing fairly quickly. That can slow down and if it hasn't, then as Mark HopeME shared and has also been my experience, it's better not to delay starting treatment.
Understanding is key to eliminating anxiety. Do share your test results and make use of the collective experiences of this supportive community to educate yourself of their significance, so that you can make the most out of your appointment with your consultant. I strongly recommend having someone you trust accompany you to your appointment. We all forget what's been discussed in the stress of the appointment and having someone there will help you ask the questions you'll have from sharing your situation here and then assist you with recollection of what was discussed.
I am so sorry you are feeling this anxiety. I unfortunately know it well. I am 61 and started treatment with O&V in October of 22. Believe everyone who is saying treatment isn't bad. I honestly feel so much better. I didn't even realize I wasn't feeling as good as I should have before treatment started. I just thought it was age. I haven't been sick at all since treatment started and on Monday I have my last infusion of O. I had anxiety so bad when this started my Dr gave me a low dose of Xanax and it helped a lot. It got me through the pre treatment anxiety. I work everyday, watch my grandkids and do everything I want to do. I am learning to think of CLL like having diabetes or any chronic condition. We just have to learn to live with it. I'm not there yet but everyday gets better and less scary. I will keep you in my prayers. I don't know your beliefs but prayer has helped me tremendously. Whenever the anxiety hits I pray for God to calm me, and he does. I ask a lot . LOL
my recommendation is to start treatment. There are many very effective treatments available now. FDA approved a monoclonal antibody just a few weeks ago named Brukinsa. It seems to be the most effective with relatively few side effects.
I trusted my team not matter how many dark turns we took. You never know he may just be recommending IVIG infusions which were first stage treatments for me - they were just slightly boring 💙
Typhoon - Sorry to hear your situation n the high stress o meter your going thru.
Unique cancer this is… you (like me) feeling fine W&Wing no big deal then “the news”… treatment time.
Yes, all cancers suck n treatments have potential downsides (side affects, etc.) … but, from what I’ve learned from this forum is the upside of the recent novel CLL treatments is…. They tend to work very well.
I’ve learned a key phrase (mantra) from this forum … that:
“CLL is treatable and beatable”
Unlike “some” awful cancers (that I know personally those cancers REALLY suck!). So take a deep breath and keep in mind that key simple phrase above, Cus you’re likely gonna be alright should you truly need treatment. N maybe you’ll be like cajunjeff per his keen reply … living life to the fullest!
That’s way cool way to live 😀.
So it’s not Dire Straights time (n I’m not talking that famous band) … yes you may need treatment… but I’ll bet on the back-end you’ll likely be alright and n moving onwards well.
Hoping all the best. Hang in there. Keep reading this forum often, there are sooooo many good stories of CLLers “Crushing this cancer” via great treatments it’s inspiring.
Hi! Try not to jump the gun! If you trust your medical team then listen carefully to what they are telling you. You are in this loop for a reason and all the tests and expertise are in place to help you. After all, the Hope is that the treatment will be effective and improve your situation. Good luck!
Hi I too was worried about starting treatment.I had jogged along for 6 years with numbers slowly rising and then my consultant started talking about treatment . I too didn’t feel extremely ill just the tiredness. After having CT scans and MRI more bloods eventually my consultant talked about the various treatments available and what she thought might be my options . I had enlarged lymph nodes in my stomach by the way but nowhere else. When I asked about was it the right time to start? one of her comments were it’s better to start when you are essentially not too bad than wait ,as your body will get weaker and the condition will worsen . I am 7 months into Obinutuzumab and ventoclax. It has been a comparatively easy journey with a few minor issues all of which are addressed immediately by the Haemotology dept. I put my faith in the excellent hands of the Haemotology dept and have nothing but praise and gratitude for them .
Ask as many questions as you want and when you think of them write them down , good luck keep us posted .
I was exactly the same. I was diagnesed 2018, felt absolutely fine but was told that I needed to start FCR , which I did at the beginning of 2019. Trust your doctor, have a conversation with them, they will explain the reasons behind the decision. Good luck.
This is the rule I apply to myself. "Don't treat too soon as time of remissions will get shorter and shorter." "Don't wait too long as it can be a very rough trip getting back". Blessing.
I was diagnosed late 2014 aged 62. I went straight into FCR early 2015, now had 8 years of relatively good health. Best advice I had from the consultant was to avoid Dr Google and use support groups for advice. Great support from Mcmillan as well. You will be fine. GoodluckMichael.
Hey! Please do not worry... Worst scenario happened to me and even it was not that bad I promise
I was diagnosed in 2019 (I was 39 years then) and have been in w&w until August 2022. At that moment (due to my complains about constant diarrhea attacks and elevated wbc - Lymphocytes in particular) my consultants decided that it is time for chemo and I went through 6 months treatment. Now all well and my blookdwork etc. all good. It wasnt as hard as I thought... I am back to my normal routine now... Running on daily basis etc. All will be back on track!
You are not alone to get frightened- especially for the unknown. As you know, you've joined the best community to help guide you along this scary CLL journey. Please note that ever since my hubby started immunotherapy last year - his body has become 100% healthy and in his recent blood test it was UMRD! This April they will do a bone biopsy to determine if he's in remission (we are hoping a deep one). I will keep you in my prayers ❤️
There has been some great advice given so far. This site has really been a "Godsend" for me. I have learned so much, which has helped me make decisions along the way.
I was diagnosed in 2015 at 55 and two years later I received FCR treatment. I have been in remission since then and feel pretty good besides the occasional sinus infection and bronchitis. I would definitely go for treatment if your doctor suggests it and as others have suggested get a second opinion from a CLL expert before that to make sure it is the right choice.
The anxiety comes and goes at different stages in this journey as I know from experience. You will get through that and on to a good life. Try to stay active and maybe get out in nature once in a while to help clear your mind. You'll be OK...
It is scary at first but try to take a breath. My husband was diagnosed 11 years ago. Still on ibrutinib. Still doing great. Was out yesterday running the chain saw on a tree that fell in a storm. He is 80 years old. God is good.
Hi Typhoon, I think most of us have been where you are right now....anxious about the future. What if this....what if that......why me....why now.....
You've gotten a lot of good advice here and what I will add is that none of us control the future. Worrying about what is next is a tough place to be and really doesn't change the future. Much of what we worry about never happens anyway - and only robs us of peace and joy in the present. This is an ongoing struggle for most of us I would imagine. If you are feeling good celebrate that today!
I will also say that I was afraid of treatment too....I was diagnosed in July 2021 at age 62 and really wanted to be one of the 1/3 that never need treatment. I became anxious and dreaded my 3 month return visits to the CLL doctor. I continued to develop symptoms that warranted starting treatment in Dec 2022 with Venetoclax and Obinutuzumab. For me, the reason for treatment was widespread lymphadenopathy and the toll that was taking on my body systems. Looking back, I think I waited too long which can make starting treatment harder on your body as others have said. Thankfully, I have tolerated and responded to this treatment well and I have hope for a deep remission at the end of this 12 month treatment regimen.
Educate yourself on your specific CLL type. Know your mutations, etc to better understand your disease. For example, I was found to have an 11q deletion and am unmutated. Though I was disappointed with the result, this helped me to understand that this particular mutation usually causes more lymph node enlargement than other mutations and maybe my WBC/ALC is not the only thing to monitor. It also helped me understand that it was more likely than not that I would need treatment.....so, I had to accept that reality as well. I could recognize that my CLL likely will (and did) present more like SLL than CLL - more lymph node involvement than blood. SLL/CLL is considered the same disease and the treatment is the same for both. Once you have armed yourself with an understanding of your disease, you will be able to trust your physician more when they make treatment suggestions or tell you it is time for treatment.
I wish you all the best at your appointment tomorrow. I pray all goes well and you will find rest in whatever is recommended. Take care!
Typhoon, the emotions that you are experiencing are very normal and will subside with passing time. I was never on Watch and Wait, but I had CLL for years when in November 2020 my dentist noticed my swollen neck lymphnodes and told me to have them checked out. I went to San Antonio's MD Anderson cancer center which did a neck node biopsy, CT scan including a comprehensive blood workup and determined "Yep, you got a good case of CLL". I was started on Obinutuzumab (By the way, the ending 'mab' stands for monoclonal antibody) and Venclexta. At the end of my treatment regimen one year later, my blood tests came back "There is no evidence of residual abnormal clonal B-cells...fc viability 99.1%", which means I am in deep remission. Also, had a TAVR aortic valve replacement after my treatment (an AMAZING procedure going to the middle of your heart via an incision in your groin). Because of these two treatments, I feel better now than 10 years ago. Seriously. Get your treatment and give thanks that medical science has extended your life for many extra years!!
My advice, read everyone that you have received over again. There is some great info in them.I wanted to delay treatment as long as possible. Numbers have not been bad at all. Next week I start treatment with Obinutuzumab and Venetoclax. Reason for treatment, CLL has caught up with me. Loss of weight, my whole left rib cage including upper stomach etc very sore. Its not getting better, which has forced me into treatment. Nausea, unpleasent lower leg itching, red dots appearing. Seems to have gotten worse quite fast. Compared to CLL not being a bother months ago.
So I now welcome treatment, can't come soon enough for me now. As that is my way to relief of symptoms. The time of ignoring is over.
Treatments are pretty darn successful now. I have read so much as to outcomes. I feel very positive that the treatment I have chosen should work well.
As others have said, don't worry as it won't help you. Be well informed and all the best to you with your decisions to come.
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