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: