CLL REMISSION.

I am in remission from CLL, since Christmas 2019. How can I tell if it is coming back, because I can't have blood tests at the moment, due to lock down. My consultant says I should be in remission for at least 2 years. Also now that I am not having any treatment, can I resume eating eggs, etc.

[HopeME]

Hi Holly

Excellent questions. Can you tell us about the treatment you received and what country you reside in? Is your doctor a CLL specialist? When was your last blood test? How did the counts look? What has your doctor told you about how he/she will conduct future blood tests? Is it possible for a nurse to take your blood at home? Can you visit a local doctors office to get your blood drawn? The more general detail you provide the easier it is for people like myself to share relevant experiences and give you ideas about what questions to ask your doctor (s).

I finished 6-rounds of BR in October 2018 and achieved a complete response. I recently had a quarterly blood test and the results were very positive. I also asked my doctor about what a resurgence of my disease would look like and he said the disease often returns gradually but it is a heterogeneous disease so it could return quickly although I got the impression a rapid relapse is not that common.

It sounds like your treatment was a success so a quick relapse seems unlikely. My assumption is your doctor feels this way, also so he/she isn’t too concerned about you receiving an immediate blood test. I’ll let someone else answer your question on food protocol.

Good luck,

Mark

[cajunjeff]

Some people can fall out of remission fast and feel their nodes enlarging, have fatigue, or have night sweats. Others can fall into remission more slowly with little to no symptoms and but for a blood test showing rising wbc would not know their Cll has returned.

As for eggs, I am not aware of them being bad for anyone with Cll. Eggs sold commercially in the US are pasteurized, but I wouldn’t eat raw eggs anyway. Did someone tell you eggs are bad for you?

What treatment were you on where you have a remission your doctor sees as being two years? Is it a second treatment? Many first time users of chemo have longer remisssions than two years and no one knows how king remissions on the newer drugs might be, wonder why your doc picked that number.

[Hidden in reply to cajunjeff]

Dear Cajunjeff,

Thank you for your helpful comments. I live in the UK.

I was told not to eat eggs and pate etc while I was having my chemotherapy. As my treatment has finished, can I start eating these things, without harm.

This was my first treatment. I am in lock down for at least the next 8 weeks, possibly much more so I can't go out to have blood tests. Many thanks.

[cajunjeff in reply to Hidden]

Holly, I wonder where your doctor came up with this 2 yr remission idea? Do you know you IGHV mutation status?

I think the average progression free survival rate for all people taking fcr as a first treatment is something like 6 years.

If you break it down to mutated vs unmutated, the unmuated group still get 4 years or so on average and a lot of the mutated folks never have their cll progress.

[Hidden in reply to cajunjeff]

Dear Cajunjeff,

Thank you for your message. My consultant said that I would be in remission for at least 2 years. Obviously the 2 years is the figure that sticks in your mind, but he did say it could be longer. I am obviously hoping that it will be longer. My main concern was knowing when it would start again without being able to leave home to attend a hospital for a blood test. However the answers that have been given to me on this site have somewhat reassured me.

Many thanks for taking the time to write.

[Hidden]

Thank you Mark.

I had FCR Chemotherapy in the UK. My doctor is a cancer specialist. My last blood test clear and showed no sign of lymphoma. As a vulnerable person I am in lock down for at least the next 8 weeks and my GP says no one can visit it me to do a blood test and that I should stay away from hospitals. Thank you for your words about the CLL coming back gradually. My consultant says that I should be free from the disease for at least the next 18 months.

[devonrr]

Christmas to now is 5 months so a very short time and bloods will still be recovering. It took 2 years for my lymphocyte count to peak at 1.8 and has stayed that way for 18 months. All the rest of the blood components after step by step improvement are now stable.

Food. Still to this day I resist runny eggs and shellfish etc.

I had my 6 monthly consultation by phone. My GP still does blood tests. So in theory you could have a blood test and then a phone consultation a week later. You’ll need the hospital to post you a bloods form.

Being on lockdown you can go to medical appointments, surely! Car to doctors practice,car home. The GP practice has severe actions in place to keep COVID19 out of there.

A choice of phone calls to help you. The consultant’s secretary or the haematology clinical nurse.

[Hidden in reply to devonrr]

Dear Devonrr,

Many thanks for your remarks. They are very helpful.

Stay safe and well.

[AussieNeil Administrator]

Hi Holly,

Further to HopeME/Mark's questions that you need answered or reports provided by your doctor, the diet question depends on your neutrophil count and to some extent your treatment. If your treatment included a CD20 monoclonal antibody like Rituximab/Mabthera or Obinutuzumab/Gazyva, your neutrophils may be fine now, but it could suddenly drop with no symptoms. (I now see that you had FCR, so this does apply to you). This (Late Onset Neutropenia) is most likely to happen within 6 months of finishing treatment, but can occur up to a year afterwards. The likelihood is higher if you needed G-CSF shots into the skin of your stomach (filgrastim, neulasta, neupogen and so on) to get you through treatment.

For this reason, it's advisable to keep to the diet low in foods that could have high counts of bacteria for a year after treatment. Eggs should be fine provided they are thoroughly cooked and not runny.

Neil

[Hidden in reply to AussieNeil]

Dear Neil,

Thank you for your message. I found your remarks very helpful. I have had an urge to eat runny eggs on toast, ever since I was first diagnosed, but I don't think it is worth the risk.

Many thanks. Stay safe and well.

[Mystic75]

Hi Holly,

My husband has been in remission for about a year. He has also postponed his labs due to COVID-19. He's getting a bit annoyed from me poking him to see if his lymph nodes have become enlarged.

He otherwise feels fine - if there is any CLL activity, I'm assuming that he'll be on W&W again before he gets additional treatment. Am anxious in finding out of course.

[Hidden in reply to Mystic75]

Dear Mystic,

Thanks for your kind remarks. My wife keeps checking my neck, but she might just be trying to strangle me after 5 weeks of lock down. Hope your husband stays well.

Stay safe and well.

[Mystic75 in reply to Hidden]

I think that is what he's afraid of as well!!

[Hidden in reply to Mystic75]

Good luck to you and especially your husband.

[Mystic75 in reply to Hidden]

Thank you so much! Same to you and your wife!!

[scarletnoir]

I think AussieNeil is our resident expert ATM, so I'd pay particular attention to anything he says.

Other than that - I wonder if anyone knows whether, on relapse, the symptoms are 'usually' similar or identical to the first time?

In my case, the symptoms were swollen glands in the neck (which, of course, I ignored for several months) and fatigue - going to sleep on the sofa any time after 6pm. If it ever comes back (and it's over 7 years, now, since treatment), how likely is it that the symptoms would be the same? If the information is 'out there', probably it would be of interest to many of us.

In normal times, I guess, we would not even be thinking about this, as our regular blood tests would show up a problem before any symptoms occur. But these are anything but normal times.

[AussieNeil Administrator in reply to scarletnoir]

Symptoms on relapse can differ from those we experience before our first treatment, due to the development of subclones and possibly long term damage to our bone marrow from older, chemo based treatments.

Neil

[scarletnoir in reply to AussieNeil]

Thanks, Neil.

It clearly pays not to be complacent.

[bennevisplace]

Hi Holly53,

I finished the FCR treatment on 2nd March, since when I've had one consultation at o/p, three days hospitalisation with neutropenia and (probably viral) infection, and more recently two blood draws in the comfort of my own home - courtesy of a visiting nurse from the local GP practice. Have you asked yours to do likewise?

During the 6 months of treatment I stuck to the diet protocols, designed to reduce the risk of bacteria getting in and going rampant. But two weeks ago I decided unilaterally to resume eating bio-live yoghurt and taking a probiotic drink every day. This is because I want to rehabilitate my gut, cruelly abused by months of chemotherapy (constipation one of the less pleasant side effects), as soon as possible. Gut health is crucial to the function of the immune system and ours need all the help they can get.

[Hidden in reply to bennevisplace]

Dear Bennevisplace.

Thank you for your message.

I haven't asked my doctor for a home visit blood test as I feel they are obviously very busy dealing with the virus. Also as I am in lock down I don't want to risk having someone coming in and bringing in any infection. We have been in lock down since 11th March without any other health problems so I don't want to take the risk.

I am still avoiding all the food that my consultant told me to avoid during treatment. I am no longer having any treatment, but I still think for me it would be better to carry on doing this.

It maybe silly, but I feel safer doing it.

Thanks for your comments and good luck.

[bennevisplace in reply to Hidden]

I understand you're nervous about any kind of contact with the outside world, and that's good, but a home visit is a lot safer than going out yourself. Your GP or nurse should (access to PPE permitting) come out fully protected to minimise any risk to both parties. Mine does a round of home visits 3 or 4 days a week, and yesterday came through the door wearing surgical gloves, apron, mask and a brand new visor manufactured by RR, Chichester. The Rolls Royce service, in and out in 4 minutes, wham-bang-thank-you-ma'am!

[Hidden in reply to bennevisplace]

Thank you for this. I will certainly contact my local GP about a home visit.

Good luck and stay safe.

[bennevisplace in reply to Hidden]

Thanks, you too.

[Canuck901]

What treatment are you on ?

Why can’t you eat eggs ? I’m sure you can eat the hard boiled eggs.

[Hidden in reply to Canuck901]

Dear Canuck901,

Thank you for your message.

I am not having any treatment at the moment as I am in remission. I was having FCR chemotherapy and I was told to stay away from eggs, pate, mayonnaise and lettuce from restaurants as they may not wash it properly.

I am still following this regime as I think it is a small price to pay for hopefully staying healthy. I would love to have a runny egg on toast, but I feel that I may regret it later. It is no great hardship for me to do this, but I think I am giving myself a little extra chance of staying healthy.

Thanks for your comments. Stay safe and well.

[Canuck901 in reply to Hidden]

Why don’t you contact whoever told you not to eat those things and see what they have to say ? Was it your CLL treatment team or pharmacist? Contact then

I could see no mayanaise because it has Raw egg

Anything raw should be avoided unless it’s fruit with a skin

I would contact who gave you that original info when you started your FCR