First 6month checkup diagnosed July 2018 very nervous.

[Paula1975]

Any advise feeling very anxious my husband was diagnosed with cll last year..first 6month appointment Tuesday coming and I feel sick with worry again does this get easier with time...husband not worried just me.

[Nanatoo4]

My worry was nil like yours but first 6 month is coming up also and it has been weighing heavy on my mind also.

[Paula1975 in reply to Nanatoo4]

It's awful so so awful my husband is only 52 and our youngest child is only 8....hope It gets easier as time Goes By...hope everything goes ok with Your appointment paula

[Nanatoo4 in reply to Paula1975]

My husband is 59. Was diagnosed in sept. This is our first appt with henotolgy oncology

[Paula1975 in reply to Nanatoo4]

This is our first too....we only see a heamotology nurse...bloods taken a docs last week and we get results from her then...our heamotology doctor told us that we will not see her again until if ever he needs treatment.

[MsLockYourPosts Passed Volunteer]

"White coat syndrome"! Very normal when everything is new. It does get better with time as you learn more about CLL and your husband's case in particular. I found it very helpful to record appointments (not allowed everywhere, so ask first), because you are essentially listening to a foreign language while stressed. I found that at some point my brain just shut down no matter how prepared I thought I was with my list of questions.

17 years later I usually look forward to seeing my doctor, but I think even we long timers have a touch of white coat syndrome if any symptoms change, or we just feel a little bit "off".

If your husband is on a six month schedule his case probably falls in the boring patient category - just what you want! It is hard though, when new, to go six months before finding out how he is doing. You will have a better idea of how things are going and what to ask about (some people here who are very good at explaining things) after this appointment.

Be sure to get copies of all of his labs, including those done before this appointment (Flow cytometry and FiSH if it was done), scans, biopsies - whatever is in his chart - and start a file now, when there isn't as much to organize. Individual numbers are generally not very important. You want to start tracking trends over time.

[lankisterguy Volunteer in reply to MsLockYourPosts]

I agree with MsLYP,

If your husband's doctor put him on 6 month follow up- that tells me that his CLL is not worrisome. If the blood tests this time come back with very few changes vs. 6 months ago, he may be one of the 30% that will never need treatment. That is likely the key question you want to ask of the doctor - what is the doctor's opinion of the "tempo" of his disease.

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Here is Dr. Lamanna explaining her term "tempo"

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vimeo.com/268909115

survivornet.com/articles/de...

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The original presentation - long explanation of CLL for newly diagnosed.

youtube.com/watch?v=usbRdss...(Not working as expected?)

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Len

[Hidden]

The worry never goes. I think it’s worse for a spouse. You don’t worry about the disease for 6 months and then a few days before the bloods are taken it all comes back. Watch and wait is called watch and worry by many with CLL.

But let’s be positive. It is a check up just as the dentist is a check up. Okay more serious but the disease is known and being looked after. Note any questions or odd symptoms before the appointment. My consultant is at a loss when I haven’t got a question. Keeps asking me!

I think it’s worse after treatment and when in remission because you so don’t want it to come back.

But don’t panic, it’s a CLLERS way of life.

[Newdawn Administrator]

Hi Paula and welcome!

It’s very early days for your husband so your fears and anxieties are bound to be raw. However, if his haematologist has delegated his monitoring to a specialist nurse, it sounds like his CLL presentation is very low level and not any cause for concern at the moment. This really is just a ‘look, see’ appointment but I’d personally be a little unhappy at not seeing the haematologist ‘until treatment was due’ (if I’ve understood this correctly). If you ever have any concerns, please insist on an appointment with the Consultant.

It really does get easier and the way I’ve coped in the 6yrs 8mths since diagnosis is to ‘learn about my enemy’ because it helps me and takes away some of its power.

It will be absolutely fine. Be honest about your fears and write down any questions in advance. I’m not sure where you’re from but it it’s the U.K. you’ll probably receive very little in the way of testing at this stage beyond basic labs.

Arrange to do something nice afterwards even if it’s just to go for a nice coffee and cake to de-stress.

I’ve got the pivotal appointment on Monday to discuss starting treatment (hopefully on a trial) and I probably feel less stressed than I did at the 6 month mark.

Let us know how it goes but I bet you’ll come out wondering why you were so worried. It’s always a concern but it does get easier.

Best wishes,

Newdawn

[Paula1975 in reply to Newdawn]

Awe thank you for your reasuring words the nurse works along side the heamotologist any probs she speaks with her...such a shock last year never experienced anything like it....it was found from a lymph node which was found when my husband had a inguinal hernia repair...his wb count was only 8 and his marginal score was 5.5 not sure what it means but that's all info we were sent home with. Thanks for the reply hope all goes well with your treatment.paula

[1ofakind in reply to Newdawn]

Good luck on Monday!!Hope it goes well!!

[cllady01 Former Volunteer]

Paula1975, I agree with everything that has been said by others. That doesn't make it easier early on, but time will be very helpful in reassuring you.

It is true that each appt. (I am in my 19th year and have a 4-monthly appt. coming up at end of February, when I will begin my 20th year.)

when I have felt a little punk anytime between the appts. or have had a pain here or there, I get a bit anxious in regard to what is happening. But, I now do not panic or go into the "what ifs" so readily, as this site has helped me learn some coping skills as well as some facts that can apply to my particular CLL.

The following link "things we can do...." by PaulaS can help with beginning to cope with living with CLL:

healthunlocked.com/cllsuppo...

Best wishes, and please feel free, as others have said, to ask questions after your appt. or at least report and share whatever you feel like sharing. We are all paddling in the same boat.

[Susiecarer]

Hi Paula, As a carer, yes you do get anxious when it comes to hospital visits, who doesn’t, but as long as you have a good haematologist who is prepared to listen to any concerns you or your partner have, it does eventually get less stressful. I watched every move my hubby made and noted it, that way we were able to discuss [my] concerns. For us it was waiting for blood test results, but after the Clinical Nurse told us about Patient Knows Best it helped tremendously as we were able to see the results before our hospital visit. Not sure where you live Paula, but perhaps you could ask if they have access to PKB and hopefully if they do you can join up and life will be more relaxed for you both.

I hope this helps but perhaps ‘friends’of this fantastic support group will be able to give you more information.

Take care

Susie

[Toothdoctor]

It seems that Women worry more than men. It’s wonderful that you care so much. He is a very lucky man!

[claree_ford]

When I was first diagnosed (summer 2017) and for the first routine checkup afterwards my blood pressure rocketed - the comment from everyone I saw was that it was partly them having their effect but mostly that I was “early days worrying” and it would probably settle down - which of course it did once I got used to the whole thing - the point of this ramble is that everyone worries so don’t worry about worrying - you really will get used to the routine in time. Of course it’s still there, a low grade constant concern - as it should be really - but the full scale panicky feeling does recede - in time, and it does sound from what you say that you do both have time to get used to having it around and to having non eventful check ups. Long may they continue to be boring for your doctor!

All the best to you both. Clare

[1ofakind]

Understand completely! The words at diagnosis are frightening to hear ...We learn to cope because the alternative of not coping is not acceptable .... At the beginning we seem to attribute every symptom to CLL but really many symptoms are just regular everyday occurrences.... With all this knowledge it’s still frightening when those symptoms happen ...

If your husband is on a 6 month WandW then you can learn to compartmentalize and limit your worry to the time of the appointment once in six months ....

If you are able to compartmentalize and you see that he is enjoying his regular life then you can as well ...

Use us here to vent and then you can put the rest of the worry on the back burner .

Hope this appointment goes well and then breath a sigh of relief and

Enjoy a treat!!

[Sojomama13]

Hi Paula1975,

I was also diagnosed at the same age as your husband with 3 young children. My prognostic markers are aggressive, 17p and Tp53, I see my Doctor every 3 months. I also get anxious before appointments, that has not changed for me.

What has changed is that after being able to get a few labs and visits under my belt, I have mostly returned to my normal self. I was a huge skeptic when folks on this site would say things like, "Enjoy your life", "stay positive" blah, blah, blah. They were 100% right. Unfortunately, it was not my choice, or anyone's choice, to get CLL. You have the power to choose to enjoy every moment you have, rather than focusing on time you may or may not have (1/3 of cll patients NEVER need treatment). I can control being present in every moment, I can control never letting things go unsaid by telling people how much they mean to me, I can control not putting things off -- like travel, I can control eating healthfully, I can control being physically active.

You have a tremendous resource in this group. There are folks who are just starting this journey or further along the way and everything in between. Feel free to reach out with questions or for support, this group has been my greatest resource. There have been and continue to be tremendous strides made in blood cancers. I truly believe that we will see a cure in our lifetime.

You got this!

Sandy❤

[Paula1975 in reply to Sojomama13]

Hi thanks for your reply...great advise just feels like a black cloud over our future.....I know this will get easier with time....think what has unsettled me more is a close friend was hesitant to book a holiday next year because she said what if he dies....OBS she doesn't properly understand the progression of disease ..she recently lost her father to lung cancer so that's what's on her mind...thinking cll is the same. One more day then off to hospital feel less stressed after all lovely advise thank you. Paula

[Lily_Pad_Master]

Hi, Paula. All my best to you and your husband. Regarding CLL, I’ll modify FDR’s famous Fireside Chat quote to read “The worst we have to fear is fear itself.”

I was diagnosed in 2013. I haven’t read through all of the comments above, and if someone has already mentioned this, then please consider this my seconding. I think that many, if not most (or nearly all) people here would recommend finding a CLL specialist. Hematology is a very broad field and few cancers have seen the rapid progress we’ve seen in CLL in the past decade. New things are happening every day, it seems, and for many (most, now), the very best treatments are to be found in drug combinations that are available only in clinical trials. While it’s probably too early to concern yourself with treatment options, it’s never too early to align yourself with a leading specialist who, because she or he is at the forefront of research in this disease, knows about all the latest options and can help your husband get slotted into the best one for him, should he require treatment at some point. Also, from my own experience, I can share that nothing inspires confidence and hope like walking into the office of someone other docs look to for guidance. If you’re looking for a doc, you can check out the CLL Society website. You can even get a free video consult with a top doc. If you share the region of the world where you live, others here will also help you find the best specialist nearby.

All the best to you and your husband. His life will be long. Worry will just make the passing of time that much less enjoyable. 😀😎🤙

Glenn

[Panz]

God Bless you and your husband. Everyone has an answer for “Does it get any easier?” And I will tell you not really but it is what it is and you just deal with it. I feel there will always be a cloud over my head..

Most of the time it is just a gray cloud but before every appointment it has a way of turning black, but that just keeps us on out toes.

I would like very much to share my story as I feel it may give you the hope you are searching for. You have received some very good advice from several very caring people....we support each other and to be totally honest I am very happy that it is myself with CLL and not my husband as it is so very difficult to be the caregiver.

I will try to make my story short but I will gladly answer any questions you may have. I was 47 when I was diagnosed, however, they felt I had had it a few years before being diagnosed. I started out with the Watch and Wait seeing my doctor and labs every 6 months, then every three months for 3 years. I was then asked just how aggressively did I want to deal with this...well, I said because of the young family at that time I said VERY! They sent me to Loyola of Chicago, one of the hand ful of medical centers in the country that did Bone Marrow Transplants for CLL. There they told me that they felt it unwise at that time and I was sent back to my specialist for further care. He promptly put me on Leukeran 2mgs once a day for about two months to get the WBC down. I have remained on that protocol for 27 years which involved a total of 10 sessions until December 18 of this past year when I need treatmentand they suggested it was time to change to something else...that being Imbruvica 420 mgs. In fact I took my first tablet just last night. This is a targeting drug not a Chemo and I am just so very excited. Also, this past year they have put me on Gammagard once a month to raise my IgG levels and it has done great keeping me in a very good place. The entire point is that I have had CLL for 30+ years and I am doing great never felt better. I am so blessed!!! But there so much out there now that there wasn’t 30 years ago so there are many choices...there is just so much hope.

Good luck on your upcoming appointment and I would love to hear how it goes..

I have a good feeling all will be well!!! 🙂

[Paula1975 in reply to Panz]

Wow 30 years that's amazing...I will update you all on Tuesday thanks paula

[J_88 in reply to Panz]

You took Leukeran for 27 years and it worked for that long? What deletions do you have?

[Panz]

I took Keukeran over a 27 year period in 10 different sessions 18 to 24 months apart whenever my WBC would go above 80,000 and I would remain on the Leukeran until the WBC dropped to 20,000. It is rather unusual to be on Leukeran that along but 27 years ago that was the only oral drug for Leukemia that there was at the time.

I do not know my deletions as I have not had that test...30 years ago when I was diagnosed the doctor told me that if I needed to know right then he would run a bone marrow biopsy, however, if I didn’t mind waiting 3 months for confirmation we would pass on that. He said he could bet his medical license that I did indeed have CLL.

I may have told you that I took my first Imbruvica last night..

My cloud was very dark indeed as anything new brings concerns....but it all went very well and I am very pleased to be on the Imbruvica. Please keep me posted on Tuesday’s appointment. Good Luck to you!

[Kokobean]

I don’t know if easier is the right word. I’ve been able to relax more between appointments. My husband is young as well. 51 at diagnosis 4 years ago. I hope your appointment is reassuring for both of you.

[marcyh]

I, too, was really nervous in the beginning, wondering what the next blood test would look like and what my oncologist would say. When I expressed that to him, he said if my CLL started to be a problem I would know it. I would have abnormal fatigue, probably be short of breath, have night sweats, fevers, infections, the "B" symptoms. I have been blessed and have been spared all of that even though my markers are troubling. So as long as I feel well I know I don't need to worry. That was almost 13 years ago.

I hope this helps. My husband isn't a worrier and that helps me not to worry too.

Marcyh