New and a Bit Scared

[Rhythmauthor1]

Hi everyone, I'm new to this site. I was diagnosed November 2017 with Stage 0 CLL. At that time my WBC was 20. As of June 2018 it went up to 25.17. I had a pain in my right side for about four months. I took at CT scan yesterday and got the results today. My retoperitoneum (wherever that is?) has an increased number of borderline to mildly enlarged lymph nodes identified. There are also borderline periportal lymph nodes. They felt this was nonspecific in nature, with differential considerations including reactive/inflammatory benign etiologies as well as neoplastic etiology such as lymphoma. They explained that these could be caused by the CLL. Does this mean that I am now at level one of CLL? If so, is this a fast progression. Should I be concerned? Any thoughts would be appreciated. I am currently watch and wait.

[AussieNeil Partner Administrator]

Hi and welcome to our community. On reading your introduction, I thought inflammation could have been the cause of those swollen nodes, so it was good to read that that was also included as a possibility in the official radiology report. Remember how your neck nodes can swell when you have an infection? Same thing, only being buried internally, we are not aware of this happening. It's caused by lymphocytes multiplying to fight the infection causing the inflammation. Take reassurance from the finding that those nodes are mildly enlarged and will probably return to normal when you are over the inflammation.

With regard to staging, it's too soon to think about this. With regard to how large nodes need to get before triggering treatment, that's 100mm or 4 inches in the longest dimension.

Neil

(Stage 4 for 9 years and counting)

[Rhythmauthor1 in reply to AussieNeil]

Thank you, AussieNeil for your clarifying and comforting thoughts. I am happy to find an area of support as I keep this information very close to my vest. Family knows and two very close friends.

[JustAGuy]

Hello, as you see from Neil's reply, many of us on W&W watch our symptoms go up and down for a long time. It's hard not to get stressed out, especially early on. But you can see from many on this site that CLL is usually a slow motion disease. Nothing happens fast. So we (try to) learn to look at our results with interest, and not get overly anxious about it. We make some adjustments, maybe keeping ourselves healthier than before, and we go on with life, enjoying it and usually appreciating it more than before. Since it is a long journey, we have the advantage that new and better therapies are being developed, so by the time we need treatment, there might be something better than the pretty good therapies which exist right now.

[Rhythmauthor1 in reply to JustAGuy]

Justaguy, thank you for your kind words of support. I see that my anxiety raises before going to my MD and in some cases when I get results. Then drops back down to life going on midrange emotions. What have you done to keep yourself healthier? Exercise? Nutrition?

[JustAGuy in reply to Rhythmauthor1]

Both really. We can't cure CLL with diet, but I figure why not give my body as much nutrition as possible with what I eat. Exercise is a double benefit, good for the body and really good for the mind/emotions!

[JustAGuy in reply to Rhythmauthor1]

Hi, there is an excellent post on this site called "Things We Can Do to Improve Our CLL Journey". It is in the "Pinned" posts which you should be able to see along the right side of the site when you scroll up or down. Highly recommended if you haven't read it.

[AussieNeil Partner Administrator in reply to JustAGuy]

Paula has referenced it below too: healthunlocked.com/cllsuppo...

[UK-Sparky]

Hi and welcome, it is scary, I know how upsetting it was to me three years ago when diagnosis confirmed. However you are among a caring and knowledgeable community. Feel free to ask questions, If you are UK based I recommend joining CLLSA, great site run by CLL patients and partners, free to join, loads of advice, free conferences to speak to experts etc.

Hugs and Prayers

UK Sparky

[Rhythmauthor1 in reply to UK-Sparky]

Thanks UK Sparky— I see that!

[Mwagner]

Welcome,

I was diagnosed last year and have been on watch and wait with no change in my overall health. I just had my third visit to my oncologist and my WBC actually went down from 16.4 to 15.8 with no enlarged lymphnodes.

I think you have come to a great place to help with this journey that none of us asked to take. The folks here are knowledgeable, helpful, and caring. They have been instrumental in helping my anxiety by providing information and I’m sure they will have the same effect on you. Best to you and family

Mike

[Rhythmauthor1 in reply to Mwagner]

Thanks Mike!

[noeagaman]

Welcome to the group. You will soon find that there are a bunch of caring people here who strive to help each other through this oftentimes stressful journey. It feels good to know that there is a place where you can go to talk amongst friends that are experiencing very simular paths in life. Our bodies react differently to CLL, but everyone has a story to tell or good advice to give that will help to relieve your stress. Hopefully you will become more and more at ease the more that you learn about CLL and see that it can be a very long journey. I once read that the longest anyone had ever lived after diagnosis was 50 years. I told my wife that I would beat that and live to the ripe old age of 105. She said, I hope you have fun alone...(she is 5 years older than me)...LOL

Hang in there. The ride get's a little easier with time...

Chris

[Rhythmauthor1 in reply to noeagaman]

Thanks Chris. I hope so!

[PaulaS Volunteer]

Hi Rhythmauthor1,

Welcome to the site, welcome to the community. Glad you found us!

As Neil says, there’s no need to worry about staging at the moment. He was at Stage 4 when diagnosed – which doesn’t sound too good but nine years later he is still at Stage 4...

As a relative newcomer to CLL, you might find the following post helpful. It’s a list of “29 Things we can Do to help our journey with CLL". I gathered most of the points from this forum, so it’s very much a joint effort from everyone here.

healthunlocked.com/cllsuppo...

These are not complicated medical things. They are relatively simple things that we can do ourselves. Not everything will be relevant to you, as we’ll all very different. But I hope you'll find some useful points there.

You say not many people know about your diagnosis, so maybe there are times when you feel rather alone on your CLL journey. But with this forum you are never alone. There are always people to listen, empathise, and share experiences.

Wishing you all the best,

Best wishes,

Paula (in Yorkshire, UK).

[Rhythmauthor1]

Thank you Paula!

[MsLockYourPosts Passed Volunteer]

I love your picture! Another welcome. People above have pretty much said it all. Brian Koffman, who's name you will come across in your CLL journey, has always said, "We're all in this together!" Welcome to the site!