COPING STRATEGIES for living better with CLL - Part 3 - some extra tips for making good use of "Watch and "Wait"

COPING STRATEGIES for living better with CLL - Part 3 - some extra tips for making good use of "Watch and "Wait"

Here are some extra practical points for things to do during "Watch and wait". Thanks again to everyone who contributed.

1) Have all the HEALTH SCREENING TESTS that are offered e.g. stool sample tests, mammograms, cervical smears, and blood tests for prostate (and possibly ovarian) cancers. Also check for diabetes. We’re probably no more likely to get diabetes than people without CLL, but if we DO have it, we need to know about it. Untreated diabetes will add to our problems with infections, fatigue, and many other things. Proper treatment can be LIFESAVING!

2) TAKE ANY NEW SYMPTOMS SERIOUSLY. It doesn’t always show on the standard blood tests, but our immune systems are damaged even in early stages of CLL. For this reason, infections and secondary cancers are MUCH more common in CLL patients, and can be harder to treat. Don’t wait too long, before getting medical advice for any symptoms that concern you, e.g. fevers, unexpected bleeding, skin lesions, bloating, persistent coughs. Any new lumps and bumps need to be followed up. They’re probably just the usual lymph nodes going up and down, but any suspicion of a “Richters Transformation” needs action ASAP.

3) Find out WHO TO CONTACT if you have a CLL-related emergency. Sometimes we have to use GPs and A & E (aka emergency rooms). However, my haematologist gave me the phone number of the hospital haematology ward, that I can ring for advice. He is also happy to answer email enquiries. Ask your own haemo doc what he/she thinks about these things.

4) SHINGLES IS ALWAYS AN EMERGENCY for CLL patients. Learn the symptoms of shingles, so you can recognise it immediately, and get treatment AS SOON AS POSSIBLE. Every hour can count, and can make the difference between complete recovery, and painful permanent damage to the nervous system.

5) CONSIDER WEARING A “MEDICAL BRACELET” containing information about CLL and any other health issues. It should mention your immuno-compromised status, and if you’ve ever had Fludarabine (part of FCR treatment), it should explain that any blood transfusion you’re given, must be IRRADIATED blood. This could be life saving if you are unconscious and being treated by people who don’t know about your illness…

***** Since I wrote the above, CLLCanada has explained that it's NOT JUST if you've had treatment with Fludaribine, that any future blood transfusions need to be with irradiated blood. It's the same for ALL DRUGS in a group called "purine analogs." He says "In CLL these drugs are...

Fludarabine (FCR) (FR)

Bendamustine (BR) probably

Pentastatin (PCR.. used at the Mayo)

Cladribine, not used much anymore

If anyone can find changes to this recommendation from any authoratative primary source, like blood service etc. , then I would like to see them.

The concern is Graft Verses Host Disease GVHD in transfusions, and some blood products...it is very rare, but often fatal... "

6) Develop the hobbies you've always wanted to do! I've always loved photography, but I take many more photos now than ever before. The pic above was taken in Scotland a few years ago, on the Isle of Arran. I was composing the sunset photo when these red deer walked into my picture! I could hardly believe it!

Some more points - thanks to Cllcanada and SeymourB.

7) Humour is important. Sometimes we really don't feel like smiling, but when we can, it does help.. We know that shingles is no laughing matter, but I had to smile when Cllcanada said "Shingles always comes late on a Friday night when the chemists are closed... Everyone's out of town... so the shingles come out to 'party' and procreate in your dermal cells!" :-)

8) Seymour reminds us to Keep copies of all your medical records and take them to any new specialist you see. (especially Blood tests and scans). Communication between different medics is sometimes very poor.

Make a list of all specialists you have seen, when, and for what, plus their contact info.... Also make a list of all medications and who prescribed them. You can hand this to new doctors or the emergency room, should the need arise.

There are more interesting points from Seymour, in his list below. Could be good to have them in a "Part 4" post that includes "Avoiding infections" and "Ways of being creative, keeping positive, keeping up one's spirits" . If you missed Parts 1 & 2, see:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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  • Well done Paula... strangely it reads like my life with CLL :-)

    Also wanted to add... have a sense of humour...

  • Chris, I'm not surprised it reads like your life with CLL :-) For the last two years I've been reading your posts almost every day, and I suspect your words and experiences have infiltrated my thinking...

    Yes, keeping a sense of humour is also SOOOO important! I will add that to the list. ;-)

    Thank you again, for all you do for the CLL communities all over the world,

    Wishing you (and the other participants) all the best for the Niagara conference next week.

    take care,

    Paula

  • Thanks Paula... you will be missed at the conference... so will many other patients...but rest assured that many of us ... Nick, Andrew and others will keep everyone well informed...

  • Your case for humour has now been added, Chris. Along with your story of the Friday night partying and procreating shingles bugs :-)

  • Thanks Paula for three excellent posts that will benefit us all, but especially those newly diagnosed. I would have been helped enormously by your words when I first received my diagnosis, and went on line to find out more about ths strange unheard of illness.

    Great photo.

    Bubhjay

  • Thanks paula for the information.

    Best wishes

    Sue :-)

  • Thanks Sue. Good to hear from you. :-)

    Best wishes,

    Paula

  • Thanks Bub. Several people have said they wished they'd had that sort of info when first diagnosed, and I think I'd say the same myself. It's taken me a couple of years to gradually take on board the things that I myself can/should do during Watch and Wait.

    I'm glad you like the photo. Actually several more deer came along the beach soon after those first two, and I took more photos, but I think the simplicity of just two animals is more striking. I think they were a mother and baby. ;-)

    Wishing you well,

    Paula

  • Thanks Paula - really helpful.

    NooNoo

  • Nice to hear from you again NooNoo. I hope you're keeping well .

    Take care,

    Paula

  • Again, very useful. Brilliant. Thanks for taking the time. Should be published (seriously) for giving to newly-diagnosed.

    zentangle

  • Thank you Zentangle. It's been very encouraging to see how many people have found these "Coping strategies" helpful.

    Actual paper publication may not be practical, but after some more additions from others, and editing, and hopefully checking with experts, it would be nice if there were ways of sharing the info more promptly with newly diagnosed people, as they're the one who would probably benefit the most,

    wishing you well,

    Paula

  • Thank Paula as a newly diagnosed stage A CLL patient your posts are invaluable,have a nice weekend ,by the way your photography is brilliant,x

  • Hi Maggie/Sunflower,

    I'm so glad you find my posts helpful, and that you like the photos. It's always encouraging to get feedback - makes me feel it was well worth doing. (I must admit it took quite a time to gather the points together, then add and edit stuff).

    Yes I did have a nice weekend - a lovely weekend. Hubby and I went for walk in a wood, and it seemed much more springlike than it was a week ago. Trees were sprouting green shoots, lots of wood anemones and celandines, lots of birdsong. We sat on a log and drank our coffee, and just lapped up the sense of beauty, and the new life of spring... while watching a cute little nuthatch run up a nearby tree then sit on a branch to tweet/sing. :-) We felt refreshed and renewed...

    I hope you had a good weekend too.

    Best wishes,

    Paula x

  • That sounds perfect,I had a lovely weekend my friends anniversary party on Saturday then my grandsons 21st yesterday so busy,trying not to think too much about next week with the Reclast infushion on Monday then blood tests on Tuesday,its been 4 months since the last ones but it seems longer.keeping everthing crossed, apart from feeling tired sometimes i am fine but then life is tiring ,hope you have lots of sunny days ahead you sound like me i love being in the garden and the countryside there is nothing like nature.I will look forward to seeing more of your wonderful photography.x

  • So glad you had a good weekend. I hope the Reclast infusion goes well next week, and that your coming blood tests will be reassuringly "boring".

    I agree, there' nothing quite like being out in the garden and the countryside... Very therapeutic.

  • Hi Paula

    I just wanted to add my thanks to you for putting together your 'Coping Strategies' information. I think you've done a wonderful job. For those people who are newly diagnosed, and also for those who are a little further down the track, but find themselves going through a dark patch, (as I have done), reading your posts will be incredibly helpful I'm sure. This cancer has so many strings to its bow, that at times it's hard to remember all of the possible problems that we may come up against, or the screenings, vaccines and such that we need to take care of. Having all of these things listed together is brilliant.

    Best wishes

    Debbie

  • Hi Debbie,

    Thanks for writing, and your kind, encouraging words.. Sorry to hear you've been through a dark patch - hopefully you're feeling better at the moment.

    Yes, this cancer certainly does have many strings to its bow. It can be overwhelming, especially for the newly diagnosed, but also later on the journey. I'm so glad you found the "Coping strategies" helpful. I wanted the info to be simple but useful stuff that can make a difference. It's still a "work in progress " as others add their ideas and it continues to grow. After a while, I might re-organise it into clearer, more logical sections.

    wishing you all the best on your journey,

    Paula

  • Paula, these three posts are just what I needed right now ... Such thoughtful and useful information! Thank you for taking the time to post ...YOU are an example of putting your watch and wait time to excellent use!

  • Thank you tpetro. I'm so glad these posts were what you needed (though of course I wish they weren't needed by anyone!).

    Wishing you all the best for the future,

    Paula

  • My methodical list of things is:

    1. Make a notebook to keep a copy of all medical records. You will probably be seeing a lot of specialists who don't communicate well, or will not decide something until they receive the copy from another physisician. So bring it with you, including copies of CT-Scans and MRI's.

    2. Make a list of all specialists you have seen, when, and for what, plus their contact info, including fax machines. You can just hand this to new doctors or the emergency room, should the need arise.

    3. Make a list of all medications and who prescribed them. Each specialist will ask you for this, and it saves time to just give them a copy.

    4. Learn to wash your hands, especially in public restrooms. After washing hands, use a paper towel to turn off the tap, which is often contaminated. Use another towel to open the restroom door. Dispose of the towel as soon as possible outside the bathroom.

    5. Learn to sanitize your home and work area - the buttons, handles, and surfaces that everyone touches the most.

    6. Make a list of your fears. Putting it down on paper takes power from it.

    7. Make a list of your joys. Putting it down on paper strengthens it.

    7.Make a list of movies to watch - stress the funny and philosophical ones. These are spirit boosters. .

    8. Watch the sun rise, and think about your life's work, and your best friends. Ponder how many new friends you've made over the years.

    9. Explore some online, free classes on places like coursera.org, edx.org, and udacity.org. Your brain may be slower at times, but some of the classes are quite easy, and still very interesting. They give you something to look forward to, and feeling of progress. You meet people from all over the world in a relatively safe forum environment. Or you can just watch the videos.

    10. If you are not an artist, now is the time to try. You don't have to show anyone. Books like Drawing on the Right Side of the Brain are a good place to start (even if the left brain/right brain theory has been disproven). It helps to turn your self criticism off - which has benefits in many other areas of life. I've been sketching the doctor waiting rooms in the back of whatever book I'm reading at the moment. None of them are great art, but it calms me down to focus on what I see instead of what I fear.

    11. Try journaling:

    lifehack.org/articles/lifes...

    There are often seminars by various secular and religious groups that explore journaling as a life changing technique.

    12. If permitted, while you're at the hospital, visit the viewing area at the hospital nursery. New babies represent great possibilities. I find this to be a great booster.

    13. There's agorp on HealthUnlocked called CLLSA. They're great people, and you have a lot in common. Go ahead, ask a dumb question, and find out maybe several other people had the same question.

  • Thanks so much, Seymour... Some great ideas! I'd like to add some of them to my list (which isn't really "my" list but a collection of other people's ideas and experiences). As the list is getting very long, I'm thinking of dividing it into clearly defined sections with different headings.

    There's a danger though, of the document becoming so big that it loses the simplicity and easy access for newcomers, that I'm aiming for... "Ways of avoiding infections" could be a separate article all to itself. As could "ways of keeping positive and boosting the spirits".

    Anyway, we can go on thinking of these things. I enjoyed reading your link about journalling...

    thanks again,

    Paula

  • I have now added some of your points to my post above, Seymour. But I hope people will also read all of your list, and maybe we can put together a "Coping strategies Part 4" at some stage.

    thanks again for sharing,

    Paula

  • Great tips to add to the list Seymour; thanks for sharing them. I thought that your tip about having your medical records on hand in case new specialists didn't have them was particularly good. How frustrating it would be to have such appointments largely wasted due to the specialist not having your records available.

    Neil - agorp administrator :)

  • agorp ... how did that make it from my cranium to my keyboard, and through at least 1 proofread!

  • Thanks Paula for the handy hints

  • Glad you found them handy, Shezsam. And welcome to the site.

    Best wishes,

    Paula

  • Yes I'm a newby to health unlocked, but have had CLL for past 2 years w & w!!! My specialist doesn't want to see me, not even annually! I've found it hard to get my head around waiting!!!! I get my bloods taken every 6months & because I 'm in the medical industry it is hard not to think of the furture & what will happen!! So thank you for your handy hits much appreciated!

  • If your specialist doesn't want to see you even annually, I suppose he's confident you won't need treatment for a long time. :-) And with 6 monthly blood tests, you'll notice if things start to change, and I'm sure you'll go back and see him/her then. (Or if you start getting other CLL type symptoms).

    But I agree that it's hard waiting, wondering, worrying.... From my experience, it does get better with time... but that's probably not much help to you right now...

    Wishing you all the best for the future,

    Paula

  • I wouldn't be happy with the specialist not even offering an annual check if I'm honest. It's ok playing the 'numbers game' and judging purely by blood test results but there should be a physical examination one would think at least once a year and an opportunity to discuss possible symptoms, swellings, nodes and general concerns etc.

    Hopefully you have access to an appointment if the need arises shezsam? Even my dentist wouldn't be happy with that level of oversight.

    But as Paula says, hopefully it's because you have a very indolent form of CLL that isn't progressing significantly. Best wishes,

    Newdawn

  • Yes agree totally but I'm in the medical industry-nurse so I'm constantly thinking of the worst!!!! Surrounded by GP's & of course any lumps or bumps I always think that it is a tumour!! I have the access to GP's so do use it to my advantage, but they just tell me the bloods are ok!!!???

  • Specialist are generally oncologists or hemetologists...they often lack the special knowledge of CLL... 6 month appoints early on are fairly standard...

    You should be followed closer than annually...

    ~chris

  • Thanks Chris

  • Thank you so much Paula ... I can't tell you how informative this was for me. is there a way I can save these to my phone? or computer or will I just need to copy and paste to my notes.

    can I also ask about the part where you talk about irradiated blood. is that for those who've received treatment or all with a diagnosis?

    sorry I am all questions this is my last I have had 1 flu vaccine and 1 pnuemonia vaccine. is there any order they should be given in only I think I'm 1 flu vaccine missing?

    thanks again

    Loran x

  • Hi Loran,

    I'm so glad this post was helpful to you.

    Re saving info to your phone or computer... I'm not great re technology, but I guess you could just copy the links at the top of the relevant pages and save them somewhere in your phone or computer.

    healthunlocked.com/cllsuppo...

    healthunlocked.com/cllsuppo...

    healthunlocked.com/cllsuppo...

    That way, you'd catch any recent changes and updates to the posts. However, you'd have to be online to be able to view them. I like to actually copy and paste useful info into "Word" and save the info as Word Documents. Or even print it out. I like having solid hard copy in my hands... but I guess I'm rather old fashioned in that way.

    You also ask about irradiated blood... As far as I know, that's only necessary for people who have had treatment with Fludarabine (which is a component of FCR treatment). I'm not sure about the new treatments (like Ibrutinib and Idelalisib). I don't think it's necessary to have irradiated blood for them as well, but different new treatments are coming out all the time, so we need to ask our doctors about it.

    I must admit that although I was on Idelalisib, I never asked about irradiated blood, and when I was suddenly in an emergency situation with a ruptured spleen a couple of weeks ago, I was too ill to even think about it. I had a lot of blood transfused and never asked about the need for irradiated blood. I'm assuming it was OK as I've never had Fludarabine. But it's better to be prepared in advance for these things - sometimes the unexpected happens, all very suddenly...

    Re your question re vaccines... I'll do some checking up and get back to you on that. The recommendations keep changing... As far as I know, the most important are the annual flu vacc, and two Pneumonia vaccs (first Prevnar then Pneumovax). But there is another sort of flu vacc, and other vaccs (eg for meningitis) that can also be given. As well as boosters for things like diptheria, whooping cough and tetanus, that are helpful for some folk.

    The important thing is to AVOID LIVE VACCINES (such as the shingles vacc), and get other vaccs done as soon as possible after diagnosis. Sadly, the more our CLL develops, the less well we respond to any vaccinations.

    Best wishes

    Paula

  • thank you Paula you've been really helpful.

    one piece of advice I'm really glad I didn't really listen to from my haematologist was "stay away from the internet". if I had I would never of found this site and wonderful people like yourself who share their experiences to help others .

  • The drugs that require irradiated blood for life are a group called purine analogs... in CLL they are...

    Fludarabine (FCR) (FR)

    Bendamustine (BR) probably

    Pentastatin (PCR.. used at the Mayo)

    Cladribine, not used much anymore

    If anyone can find changes to this recommendation from any authoratative primary source, like blood service etc. , then I would like to see them.

    The concern is Graft Verses Host Disease GVHD in transfusions, and some blood products...it is very rare, but often fatal...

    ~chris

  • Thanks Chris, for that wider view of the need for irradiated blood after certain treatments. I knew people needed it if they'd ever had Fludarabine, but hadn't realised there was the same problem with Bendamustine (and those other drugs you mention).

    Seeing as mistakes in this area could be fatal, it sounds as if ALL blood should be irradiated, just in case... Sometimes blood transfusions are given in a hurry, and emergency staff might not check what treatments have been had. I wonder if there would be disadvantages to this (irradiating ALL blood for transfusion), other than time and cost?

    Paula

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