My partner was diagnosed with CLL in July at age 56 after a standard blood panel showed elevated WBC. Since then, we've been on a roller coaster, as he has had enlarged lymph nodes and, more recently, skin lesions that seem to have been the result of an infected bug bite (but looked more like bubonic plague and landed him in the hospital for 2 days). Other than that (Mrs. Lincoln, how did you enjoy the show?) he's been feeling good. He's lost 25 pounds in the past six weeks, which he assures me is the result of extra salads and gym time, but seems awfully fast to me. He's had the full gamut of blood tests, which confirmed that he has unmutated IgVH but no other negative markers. And we moved from our local oncologist to a NYC based research practice, which has been like night and day. They are on call 24/7 and the doctor or nurses speak to him almost daily so we feel in very good hands. They also sent him to a pathologist/dermatologist who finally got the skin issues under control. And they are teaching us how to deal with what is clearly a messed up immune system.
As for me: For the first few months, I felt like I was pursuing my PhD in Internet Medicine, learning as much as I could and making myself crazy in the process. Right now my hubby is feeling very positive, and I sometimes feel like either the voice of doom or the only adult in the room. He doesn't seem to be taking on board that the unmutated CLL has a more difficult prognosis, but on the other hand, his positive attitude is clearly helping not only him but other family members as well. So I keep my worries to myself for the most part. Wonder how others manage the roller coaster aspect of all this?
Anyway, I'm happy to have found companions on this journey and wish all of us swift sailing and healthy outcomes!
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Akapiratequeen
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61 year old male with 2017 diagnoses and my life as I knew it is over , this last weekend was particularly difficult as I was still competing in ultra trail running events until April 2017 and this was the first of many big events I had to miss and it was a very important part of my life
So that is that and my wife who also has some medical challenges and myself are making a different life and adjusting to live as well as possible with are new limitations
We are taking next week off and visiting family in several places and will be at a very important graduation ceremony for one of are children who has just completed a very difficult government training program
I had a huge morale booster today as after 10 months of misery with my right foot unwilling to heal i was able to get the chief of staff for foot and ankle at the Hospital For Special Surgery to take my case
I had and office visit today and after and exam and X-ray and MRI was arranged and a treatment plan will be worked out after the results clarify the issue ,this a huge burden lifted as the foot pain is really stressful and if I can walk without pain the CLL just becomes so much easier to deal with
And one by one I will just keep beating each medical challenge as I am quite stubborn and all of the doctors pick up on positive attitude
Stubbornness is obviously key! I wish you all the best!
I will have to remember the "Mrs. Lincoln, how did you enjoy the show?" line. Seriously, CLL is an immune problem. Your partner probably should only eat cooked foods - no salads and be careful in the germy gym. When I was on wait and watch, I went from stage 0 to 3. As my immune system became more impaired I stopped going to the gym and stopped eating any uncooked foods. After I started treatment (Acalabrutinib) and my CBC improved, I went back to the gym and to eating salads. By the way, my weight dropped from 165 to 151 before treatment. I've since gained back the weight and then some.
Yes CLL is well characterised as a cancer of the immune system. That said, it's the health our neutrophil count that determines whether it is safe to eat certain foods. With a count below 1.0, we need to watch carefully what we eat: healthunlocked.com/cllsuppo...
Greenblue, it's great to hear you've been able to get back to gym attendance after treatment!
Akapiratequeen, do you know how healthy your partner's neutrophil counts are? Another important measure of immune function with CLL is immunoglobulin levels IgA, IgG and IgM, which can fall over time. These aren't tested all that often and he may not have had them done, given he has only been recently diagnosed.
I ride the roller coaster too. I alternate between being the voice of doom and the pragmatic adult most of the time, and come here for a good dose of hopeful optimist. I find this community brings that out in me and I'm grateful for it. I've found most of the posts are practical and honest but with compassion and humor.
About that roller coaster - Uphill I think of my quick time from diagnosis to treatment (generally bad indicator) and "too close to call" mutated/unmutated status (possibly bad indicator) and assume I'm in a bad outcome group. Then the coaster crests and I go flying back down - WHEE! I feel grateful for life, treatment possibilities, the unknowable nature of the outcome for any of us, and the ability to still enjoy the ride most of the time.
Like your partner I have no other negative markers. (Or positive ones.) I was diagnosed last summer and started treatment in January of this year. You may be in for a similar ride. I suggest not keeping your worries to yourself, but if hubby doesn't find that helpful you might find someone else to to share your concerns with. (This forum is a good place for that.) Your feelings and worries matter, too. This is a major change for both of you.
Thank you! Your journey sounds similar to his so far. And I love your attitude -- both practical and joyful. I already notice some positive changes in the way we are interacting -- less bickering about the small stuff and more enjoying life now instead of putting it off. Last week I said "Let's go to a Broadway play!" And instead of worrying about cost, planing months in advance etc., as we usually do, we got last-minute tickets for The Band Visits (highly recommended) and just did it!
As for your question about the roller coaster management I think that if you get to the point that u recognize that you are not in control you can let go and live every day well. You can do things to positively influence this disease but you can’t control it. I want to live with CLL and not have it run my life. Once I reached that point which took time, the roller coaster ride became more of a peddle boat ride with only the occasional wave of doubt and worry to find disconcerting and then I could resume smooth cruising.
It is very common for one partner - sometimes the patient, sometimes the caregiver - to be the one who is into the details of CLL and the other to not want to hear them. Try to avoid Dr. Google. There is a lot of information here. Another good resource is cllsociety.org - good section on The Basics, a good list of links to reliable, CLL specific information, and lots of up to date information. There are three centers in NYC with nationally known specialists. I'm guessing that your husband is being seen at one of those. He will be in good hands.
My husband also has CLL, and I'm also the one who knows more about his disease than he does. My husband has lost 40 pounds since March of this year, but is now maintaining. He actually had been a bit overweight, so now he is at a more appropriate weight. We recently had to go clothing shopping to get him all new clothes in smaller sizes. I think he looks great though.
Coming to terms with cancer is difficult I feel. Personally, I only have my sister to lean on, as our adult children find it too difficult to be sounding boards. My dearest friend lost her teenage son to cancer, so I don't feel right sharing my concerns with her. I find it can be a lonely road, but hang in there, it will get better.
We eat salads as well, and I'm sure our vegetarian diet contributed a bit to his weight loss. Hubby also goes to the gym as well, but I don't think that has anything to do with his weight loss. But, he feels well, and that's what matters.
Interestingly, from the many posts I've read here, it seems those who are unmutated have gone many years before needing treatment, and some still have not needed any treatment. Meanwhile, my husband has good markers, and needed treatment just 20 months after diagnosis. So, your husband could follow the not needing treatment path for a long while.
My husband also has a very positive attitude, and I keep my worries to myself as well. Keeping the positivity going is important. Reducing stress, and being positive really do go a long way.
I wish your husband well, and I send hugs out to you as well.
Warm welcome to our(all of us) community. I appreciate you wish you didn’t have the need to, just like the rest if us.
Click on my name and check my profile to read more details, but in short, diagnosed 2012 at age of 56.
If there is one thing I would say is do not panic. CLL is in general a slow burner and you have time to think and plan. Professionally I had to do lots of research for my job so it came naturally to me to leap in. I was after a few weeks of burning the midnight oil that I realised I could take it easy.
Please be careful with Dr. Google, there are a lot of good sites but some are not. These days, I invariably start here as it is good for experience based comment before going elsewhere and my medical team (consultant, nurses, GP etc) are my source for my treatment guidance.
Thank you, Rob! I agree with you about the research. I think I needed a deep dive to understand the issues we are dealing with, but now that he's found excellent care I can try to relax and let the professionals take over. I wish you all the best as well. Deborah
I'm finding that my friends and family are having a harder time than I have. I, too, have major issues with bug bites and rashes even post treatment.I also made a huge effort to change lifestyle and lost 25 lbs in two months (which I have gained back unfortunately).
Any cancer diagnosis stinks, but the bright side is you only have unmutated status. Some of us have higher risk profiles (I have the dreaded 17p deletion among of issues). Your hubby is well enough to be at the gym, and he can feel great for a long time. When he needs treatment and because you are in the US, you will have many options, and that could be years away.
It's tough to get anxiety under control, but over time it will be easier. It has for me and my family.
Thank you for these hopeful words. I am also interested to hear about the rashes as these came out of left field for us! He's been dealing with them for a month now (third round of steroids) and they are finally tapering off. But he ended up in the hospital for two days first, quite unexpected at this early stage in the game. Deborah
From my doc's reaction, the rashes are not typical but not uncommon either. Last summer, from my knees down, I had an itchy rash and probably 75-100 bumps. Scratching made more bumps. I was so itchy it woke me up every night last summer. Treatment helped with the rash though now mosquito bites create a hive-like reaction followed by oozing, scabbing and a long healing time. I'm just glad it's finally getting chilly and I can cover them up with tights and wear skirts again.
The good ones ... you only found out due to a 'routine' blood test ... He's doing the right things, feeling very positive and getting down to getting some exercise and eating well ... your feel that your now in good hands ... that's worth his weight in gold ... ( how much is 25 pounds of lost gold worth ? ) .. and most importantly, you are both being proactive with your medical team with ANY problems.
The reality now is that you have to work with your doctors in dealing with any symptoms of having a surpressed immune system, whilst your Consultant Watches and Waits and monitors any changes to the blood counts.
I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment. ... so my CLL experience has been about developing a relationship, with my GP,s in dealing with any symptoms that may arise.
I 'manage the roller coaster' with self-depreciating humour ... I decided to write my anecdotes down in a book ... I'm now on book two ... 279 pages in total so far.
Thank you! I am writing about this as well! Not yet for public consumption but I am keeping journals. I am glad you have been so healthy so far and will keep you in my prayers.
Hi Ak, I cant add anything else to what hasn’t been said already. EXCEPT
do not rely on Dr Google, the information is so so outdated, that when my hubby was first diagnosed Jan 2017 I was mentally planning his funeral.
It sounds like he is in good hands at his hospital so learn to listen with all ears and a pen and pad in hand.....we have all been on the dreaded roller coaster ride, twice for me..first time with our son, and then with hubby.
Now we are just taking a very sedate walk around the outskirts of this ride, as hubby is in Clinical Remission, but with every sneeze, cough, ouch, and his usual self weigh in on a weekly bases I’m never 100% relaxed.
This is a wonderful supportive site and without them I, for one, know I could have not made it through this journey. There are a lot of knowledgeable people on here, some that have been on this journey for years and years, and I always felt/feel less stressed after their advice.
It’s hard being the carer, seeing your loved ones going through this, but he has the support from the hospital team, and you need the support as well.
Gosh, for someone who couldn’t add any more comment I seem to have waffled on a bit, but I guess I just wanted to say YOU ARE NOT ALONE on this journey. Take care and I send you a massive BIG HUG
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