My 46 y/o husband, who has CLL, will be starting Fludarabine chemo treatments on Monday due to an enlarged spleen. He will continue receiving the treatments monthly(for 5 consecutive days) over the course of 6-8 months. If there's anyone out there who received treatments with Fludarabine &/or other chemo drugs & does not mind helping me out, I've listed some questions I have related to precautions & side effects of Fludarabine:
1) Because my husband went prematurely grey & bald close to 10 years ago, will he grow back hair if he loses it due to the chemo? If so, will it come back grey since he lost his natural color pre-chemo, or could it come back his natural color or another one?
2) Does my husband have to take any precautions at home because of the chemo? For example: Does he have to flush the toilet twice every time he goes? Can he still go bowling every other weekend(he & I are on a couples league)? Should he avoid cigarette smoke, smoky places, &/or contact with people who smoke? Even though he doesn't clean our cats litterpan, are there any issues to having cats in the home during this time? Since he can't have fresh fruits or veggies, can he still have canned ones? Are there other foods he needs to avoid?
I know I've asked ALOT of questions, but the oncologist was vague when we talked to him and basically said just to avoid sick people & no traveling during the week my husband is getting the chemo treatments.
I want on that particular combo of chemo drugs but I have been through total immune crashing chemo... so I can advise .
If the doctor says he will lose his hair you can probably count on it yes, but frankly I wouldnt worry about that at all and buzz him if he feels ready to do that before it starts to come out. Having prikly hairs all over you stinks particuarly when you can hardly get up out of bed and they are annoying you.
As far as the home care goes... frankly with the toilet, I avoided flushing it perioud and often asked others to becaues of the risk of spray coming up when you flush. These particles are easily inhailed and can cause major joint pain during chemo if infectoin takes hold of the lungs. (experince yes) Dr.s tend to not seem to realize as I had to figure it out for myself that chemo doesnt cause bone pain, infection does just like how your body hurts during the flu,,, times 10.
YES he can and SHOULD continue bowling!!! Keeping as much of your normal scheual as possible is very important. Bordom and not forcing ones self to get up and do what you love leads to depression very quickly. Please encourage him to do things, just be careful and carry around hand santitizer everywhere you go to avoid infection.
A note on chemo infection... people die quite often from infections they pick up while going through chemo..but its still listed as a cancer related death. Frankly I find this unfair.
Yes he should avoid smoky places IF he has a lung infection,,but most likely if thats the case he wont be wanting to bowl anyways. I woulnt let somone who smokes do so in my home, but for a couple of hours at the bowling alley,, if he wants he can wear one of those blue masks,, just as your oncologist for a few and he/she should be willing to share.
Yes there can be a problem with the family cats if they are allowed to come and go, are unvaccinated and or if their flea treatments are not up to date. I always used spot on (YOU do it, dont let him , those chemicals shoiuldnt get near him while on chemo, so no petting until its absorbed) but this is important.
URI's are most likely to jump species when a person hasnt the immune system to resist. Ringworm infections can become severe if kitty is carrying it around,, thats something to watch with gardening too actually, tomatos carry ringworm fungus. Anyways,, id discourage him allowing the pet in his face, but as a lap warmer as long as kitty is healthy will be good for him... but YOU need to take over care competely yes.
I went neutropenic,, (zero white blood cells) and while in the special germ unit the only real restriction was fresh fruits and veggies. Outside of that , the nurses had to deliver the food within a 10 minute time frame, and come take it away before an hour. I assume this was to ensure NO bacteria could grow and be ingested.
Yeah,, oncologists can be this way and if yours wont let you ask questions, dump him before the going gets rough. I had a doctor who became completely irate when I asked why he was giving me an extra treatment immediatly following the neutropenia, that had almost done me in, I wanted a break. He got mad and yelled at me saying HE was the doctor... thankfully two nurses were in the room when it happened, so it wasnt just my word against his, and the nures's got me a new doctor within the hour who took over my care.
My new oncologist was as you described, 'vauge' not wanting to answer questions with more than a sentance or two,, and unfortuatly I paid for that because I was intimidated to ask for pain medicine when I needed it and suffered alot because I had a hard time speaking up for myself. Dont let the doctor blow you off or act like he is always in a hurry. This is YOUR loved one and HE deserves the best care, and you need to both feel like you can depend on the person who could cure or kill him.
Thank you for your reply. The information you provided did help some.
If you don't mind, I have some more questions about taking precautions in the home. Here they are:
-Are there special precautions that my daughter & I need to be aware of &/or take, either for our protection from the chemo or for my husband's protection? For example, there is a bathroom right off our bedroom. Considering that Fludarabine is excreted in the urine, will I still be able to use the same toilet as my husband?
-I understand what you meant by it not being safe for you to flush the toilet, thus you had others do it for you. But is it safe for myself or my daughter to flush the toilet after my husband just used it, if the chemo med is excreted in his bodily waste?
-Regarding laundry, do I have to wash his separately &/or with special detergents? Do I have to wear special gloves when handling his laundry(I thought that I read this somewhere)?
-Can cleaning products still be used in the house? Also, we have a cleaning service that comes out to our home once a month to clean. Will I still be able to utilize them if they use their own products? Or should I tell them to hold off until after the chemo treatments are completed?
-Regarding my 2 cats, they are both up-to-date on vaccinations, both declawed on all 4 paws, no history of fleas ever, and roam freely around the home. And my husband is not a cat person, so handling the cats or having them crawl all over him won't be an issue(unless he's sleeping--one of the cats likes to irritate my husband by crawling around &/or sleeping by his head).
I apologize for sounding ignorant & naive, but this is all so new to me and I can't find answers anywhere!! I even went to Barnes & Noble and they didn't have anything. Anyways, thank you to anyone that replies with answers. I honestly appreciate it.
Please no no dont apologize, its a new experince for you and you deserve the information because unforutnatly doctors dont usually make a point out of any of these things... your questions are really very good! Heck I wish I had thought to be so well informed.
1.Are there special precautions that my daughter & I need to be aware of &/or take, either for our protection from the chemo or for my husband's protection? For example, there is a bathroom right off our bedroom. Considering that Fludarabine is excreted in the urine, will I still be able to use the same toilet as my husband?
All chemo meds are extreeted through urine and bowel movements, also something to be more aware of really is if your husbands doctor decides he needs radiation. That they usually give pretty good information on atleast because a perioud of isolation from others is required. So long as you dont come into direct skin contact with the urine or feces though you should be fine. If your worried though, use a clean wet wipe like you use for babies before sitting on the toilet just to be sure these chemicals arent on the toilet.
2. But is it safe for myself or my daughter to flush the toilet after my husband just used it, if the chemo med is excreted in his bodily waste?
It probably is yes,,, but if it concerns you,, what I did when I had no one around to flush for me was take a large bath towel, put down the lid, toss the towel on top so that most of the rim edge was covered by it,,, flush then quickly step back outside the door threshold so that I wouldnt inhale any spray. I then took the towel and tossed it immediatly into the washing machine to be washed with the next load.
3. Regarding laundry, do I have to wash his separately &/or with special detergents? Do I have to wear special gloves when handling his laundry(I thought that I read this somewhere)?
Before they are washed yes my husband used rubber gloves to collect my laundry which was in a seperate pile on the tile floor directly beside the washing machine. He washed them once (seperate loads by themselves after other household laundry was done) then ran the washing machine a second time with NO detergent for an extra through rinse. Outside of that , unless your extreemly chemically sensative it should be fine. Oh, he just used the latex gloves you buy to do dishes, they hold up longer than the thin disposible ones. and can be washed in real hot water.
4. Can cleaning products still be used in the house? Also, we have a cleaning service that comes out to our home once a month to clean. Will I still be able to utilize them if they use their own products? Or should I tell them to hold off until after the chemo treatments are completed?
Oh yeah,,, I tell people to avoid any kind of "sol" products though like lysol, pine sol ect due to my own prior experince with raising cats in a cattery. Cats are very sensative to the pine/lysols and I have seen kittens born with severe deformities in households where its used more than once by new breeders not in the know. Im sorry, but personally I cant help but think, no cats arent a close relative of ours on a genetic level,,, but if it can do that to cats... whats it doing to us?? I suggest instead using the long time proven safe products like bleach, vinegar, strong salts for scrubbing like epsom salts, and rubbing alchohol to keep surfaces and such clean.
As far as the cleaning crew goes,, OMGOSH DONT get rid of them!!!! LOL you will sooo appricate them that much more during chemo with all the doctors appts to run to.
Im not sure how much they talked to you two about how long treatments take and such,, but most often its a day long process atleast at first. You go into the center or office where your meds are given, sit in a chair and just stay planted most the day. Definatly bring a book, ask if they have internet service that you can log into if you have a lap top you can bring for entertainment, and or hand held games. if its a cancer center, take food and drinks for yourself,, most likely they will be provided for the patient, but Id ask first to make sure or bring your own.
A couple of other 'must haves' would be a small warm blanket he likes (they offer these but they are thin where I went anyways) and if he has any prescriptions he has questions about , I hate to say it but the nureses themselves usually know more about side effects and such than doctors... so they are wonderful for asking, and they have more time to answer your questions. Nurses administered the chemo where I went so hopefully you'll be going to something similiar for treatment.
OH, sorry off topic,, I would talk to the cleaning crew about the things they use to clean with, but I would definatly keep them on and mabey even have them visit more often if possible. My husband was working full time when I got sick and just trying to keep work off his rear while he took me to the treatments (I wasnt capable of driving myself anywhere due to ddizzyness and mental fog during treatment and this is pretty common) not to mention keep up with the needs of our two daughters who were 7 and 8 at the time was just a huge strain. Im amazed he did as well as he did, really I am.
Sounds like the cats should be fine,, but hopefully his many hours of laying around waiting for the effects of the last treatment to wear off will endear him to the warmth of a kitty laying close to his side. Pets can help relieve depression and of all the health problems you can have, this one is real likely to provoke feelings of isolation and sadness.
Please dont hesitate to ask anything that comes to mind Swee,,,, this is new territory for you and obviousely in the back of your head your not underestimating how hard it might be. It is very hard, you cant just pretend nothings going on,, a few things I noticed that may help your husband on this journey back to healthy...
chemo seems to supress the sodium channels in the cells which pass energy/electricity and information from one cell to anouther, the heavy chemicals weight the cells down causing you to feel exausted,, tell him to drink water CONSTANTLY... this helps lift some of the heavyness making it easier to function. This heavy chemical slurry also tends to throw off the bodies ability to regulate its tempature, so an electric blanket is advised by this surivor atleast lol. Also , consider buying one of those pillow top cover memory foam things you lay on your bed. When chemo causes body pain (or when it did for me) I found the memory foam helped relieve the joint pain sooo much. I had been finding sleep fleeting until I discovered memory foam,, what a relief. And most importantly, make sure you advocate for his pain levels if he seems unwilling while at the doctors. I found for some reason I could howl about bone pain at home to my husband, but when we got to the doctor all I could seem to do was wimper. The doctor always made me feel like I was young and should be able to handle it better than I did. I have sworn that god forbid if I ever had to go through it again I would demand a pain specialist be assigned to me... some people deal with the body aches and pains well,, I just wasnt one of them and I should have made that more clear instead of allowing myself to suffer needlessly because there is help.
*Bows with deep respect for your willingness to understand*
I had fludarabine for my first round of chemo and it was fine. No hair loss, no significant problems. At the end of my second round I had to go off it because it was causing a reaction in my lungs.Only 1 in 5 patients develop this kind of reaction according to my internist. Aside from this reaction, fludarabine is an easy chemo. Your husband will do fine.
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