Hi all
I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are there certain times during trwatment when the immune system is most compromised. We are avoiding busy places but dont want to live in a 'bubble' either. By the way I have found this site a great help.
The most vulnerable days are two weeks after the infusion when your system reaches nadir and starts to climb back up again. So I would be most careful on days 12-17. Pls note - the effects of the chemo are cumulative, so they do bloodwork before each chemo round to see if you have recovered well enough to get the next round.
Hi Nugg.
Welcome.
I am on FCR Round 4. Very few side effects. Life is ok!
There is a lot of advice about living with neutropenia. I recommend Googling, and indeed search this Forum where there is huge amount of good stuff.
However, do live in a bubble!
Infection is a serious risk. Sepsis is very dangerous. We are at risk. I have had midcycle bloods. Neuts drop very low. I know this stuff... from another life(!)
Don't shake hands. No one with coughs colds D&V or any known infection in your home. Avoid restaurants, pubs, crowded places. Supermarkets.
That includes or GP doctors surgery. My (UK) Team team expect me to have bloods at The GP Surgery. Bonkers advice. I don't! Full of sick ailing sniffling sneezing characters. Believe me. Sneeze droplets, virus laden can remain suspended in the air indoors for hours!
Don't shake hands.
Wash hands. Own towel. Alcohol gel rubs.
Care with diet. Neutropenic diet is austere. "Pregnancy" diet ok. But care needed.
Where gloves in garden. Don't mow the lawn. Care with handling pets...
Etc etc.
Finally. If unwell get to hospital. Have the contact details of your Haematology Team. Take temperature. If over 38° get help immediately. Rigor, vomiting etc.
Not GP. Not out of hours on call GP. Direct to hospital. If you call an ambulance tell them its sepsis risk, they will come fast! Best drive in yourself. If its 3am don't wait till morning.
Not sure where you are living, you should have been given this info. In UK, a booklet with this advice would be normal.
Having said that, there is a fair chance, your husband will be feeling better soon, have few side effects, and like me, feel normal again after WnW.
Btw I still do exercise, cycle, but not in the gym. Avoid swimming pools!
I wish you all the best, with care it will go well.
Keep in touch.
Jig UK
I'm pretty sure I got my mid FCR infection from the hairdresser, or possibly supermarket. I already looked like a muppet, so I felt I didn't have much choice for the first, and one has to eat! It's tricky.
John
Sure! I have a very supportive family, so I am able to avoid supermarkets etc.
I also take an antibiotic and an antiviral regularly, I am unsure tho of the evidence for this. I take them dutifully as prescribed.
Also try to get a comfurtable face mask to wear in public. My wife odered me masks that are made of soft material and come in different colors. They are so much more comfurtable that the masks that you can get at the hospital. If you want I can ask her for the web address, but she Googled medical face masks and found a veteran owned company that is very good. They even replaced two masks for free because they did not fit my face well. I wore those masks everywhere I went and even wore them when someone visited our house with small children.
Good luck with the rest of the FCR for your husband.
Chris
Thanks for that, I agree about attending doctors surgery worst places for infection. Good luck with the rest of your treatment
Hi Nugg9, it is true, we must avoid getting infections. Remember that CLL is sometimes called a cancer of the immune system. We are even more vulnerable during treatment. If the doctor has not mentioned what precautions to take, ask. At first when diagnosed, many of us think, OK we have to wait and watch. If we feel good, we may not think it is so serious. Some on wait and watch do really avoid infections without seeming to take many precautions, but many get them constantly, colds, flus, shingles, etc. I seem to be fortunate that so far I get less infections than my wife and even those I work with. I do take precautions though which has been a life style adjustment. I quit shaking hands, it can be awkward at times, but I do it. I do ride the bus and I go to my religious meetings, but if I notice someone sick, I try to distance myself. I may even put on a surgical mask which I always have with me. When my wife is sick at home, I wear the mask. If I am forced to shake someone's hand, I absolutely avoid touching my face until I can wash my hands. Since I have kept my CLL confidential except to just a few trusted friends and relatives, people who don't know just think I'm a fanatic or maybe a hypochondriac. So be it! I want to stay healthy! We gotta do what we gotta do! Read up on it on this site and other places. One thing I notice, even though I don't get colds and flus, the smallest cut or scratch on my skin will get infected quickly. I have to be on it with antibacterial right away. Ironically the thing which has worked the best for me to knock down such skin infection is something a pharmacy in Asia gave me, potassium permanganate. It is just amazing. I believe that this problem I have with cuts getting infected easily is due to my lower neutrophils. You see that others mention it on this site. It is one type of cell in our immune system which takes care of foreign bacteria. Neutropenia is the dangerous condition when neutrophils drop very low. If that happens, we have to take even more serious precautions. So just "turn Japanese" and politely bow, no need to shake hands!
Thanks for the advice
Nugg, we can still have a pretty normal life, we just have to adjust to new circumstances.
When waiting and watching, or is it watching and waiting? Anyway, on W&W, we don't need to worry and stress about our disease. Many of us feel good during this time. Many here have been W&W for many years. So take care of your health. Do research. If that makes you freak out, ask your most trusted and reasonable friend. Eventually do your own research though to keep informed.
Since we hope to be on W&W for a long time, learn about the different treatments including new ones which are being developed now. There are many new strategies which are looking good! By the time we need treatment, we might benefit from one of them.
Even after treatment, many go for a long time before it is needed again.
So enjoy your life your friends and your family!
Going today for round 3. Feeling great so far. No side effects. Blood work responding.
I kinda isolated myself after the first round. Then my nurses and doc said just live your life. Neulasta shot did it's job.
I went to restaurants when not as crowded, movies during the day - last row, stores during off hours. Pool/beach to relax. Mask in Florida is a sweat problem. Can't wear more than 5 min. So I don't bother. No hugging or kissing.
Hopefully round 3 goes as well and I can stop. I am glad my treatments are now and not during flu season/ winter.
I was actually glad to go through FCR during winter. I live in southern Texas and wearing a mask during summer would be hard just like in Florida. I wore mine everywhere, but my wife got me four that were very comfurtable. I could not wear the normal surgical masks for very long. I once went to an air show on an Air Force base wearing one of the face covers that fishermen wear. People gave me a funny look, but it was comfurtable in the sun...
Chris
I know I am dreading flu season hope your treatment goes well too
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