Fever, mouth sores and night sweats- Oh my!

[julielucas]

Hi Y'all,
I haven't posted in a long time but I read this forum every day. I've tried comparing others experiences with my husband but as every one has said " no MDS patients are alike". Let me recap my husband's condition:
Jeff is 68, dx with Chronic Lymphocytic Leukemia (CLL) in 2007, chemo in 2008, complete remission until 2014. Treated with ATG in 2010 for thrombocytopenia. He was seen at the cancer clinic every 6 months and things were going well until May 2014. His blood levels indicated the need for a BMB which showed MDS. He is RAEB-1 with 5% blasts in June. The MDS is very likely due to his previous chemo. Started Vidaza, went through 6 cycles with no improvement. BMB in Nov showed pancytopenia but blasts were down to 1%. He had one round of Dacogen in Dec but missed his second cycle because he was hospitalized from Dec 27 until Jan 1, 2015. He had fever of 103 and was treated with IV antibiotics 3x / day for 4 days.
He's home now but is so very weak! He went from needing transfusions once a month to now every week. His WBC are 0.5, platelets 14 and Hb drops to 7 about 3 days after transfusion. He's lost a lot weight in the past month ~ 20 lbs. He has mouth sores, bad teeth and no appetite. He still runs fever but can control it with Tylenol ( bad for platelets), and cool showers. He's on oral antibiotic and acyclovir. He has an appt with his oncologist tomorrow and I'm hoping his blood counts are good enough to resume the Dacogen.
I have many questions and hope y'all can help.
Mouth sores: He's used magic mouthwash, salt water and acyclovir to no avail. He has a real big one on his cheek that refuses to shrink. I read about a new rinse called "HEALIOS" that is a glutamine base and is supposed to be really good. Have any of you tried it?
Night Sweats: It happens every night since June. I've tried putting a waterproof pad under him, but does anyone have any hints on making the bed so we can avoid having to remake the bed every 4 hrs?
Lack of appetite: The mouth sores and bad teeth make it hard for him to eat. He has a few broken molars and some empty spaces where he's had teeth pulled. We're trying a soft diet, almost liquid. He likes to drink a product called "Muscle Milk". It's high protein, lactose free and yummy! But there's got to be something else to add for variety. Any tips would be greatly appreciated. The hospitalist suggested we go back to Duke and consult with an oral surgeon to extract those bad teeth. He's not been able to have any dental work done due to low platelets for the past 4 years!
Now for my last, really tough question: is this the beginning of the end? After reading through these forums it seems to me that Jeff's health has slipped very rapidly: lower blood counts, neutropenic fevers, more frequent transfusions and possible reaction to platelets.
Jeff is not a good candidate for SCT nor does he want to go through one. He'd rather spend what time he has left being with his family, reading and teaching (if he has the strength).
Thank you all! I hope everyone is in good spirits and is fighting the good fight!

[Cheryl C]

Hi Julie

Really concerned to read of your husband's current state of health. Things can change so quickly with this horrible disease. Please don't give up hope yet! I have a couple of options which I have used and you may want to investigate. They are natural remedies so there won't be any harmful side effects if you want to try them.

As a relief for the mouth sores I suggest antibacterial Medihoney (NZ manuka honey or US equivalent). It's natural, its delicious and I have found it helpful when I've had mouth ulcers. This website gives information about how it has helped in chemo treatment as well: http://www.express.co.uk/life-style/...-survive-chemo

Re the teeth problems, have a look at the coconut oil pulling option here: http://www.coconutresearchcenter.org...%20pulling.htm I have a sensitive tooth and because of the MDS and low white cells I am nervous of x-rays and invasive treatments and I find that this very quickly relieves my problem.

All the very best to you and Jeff as you try to find what's best for him.

[PaulS]

Hi Julie - sorry to hear about your husbands problems. Had a thought about your dietary question - You can try getting a NutriBullet - the small blender like device advertised on late night TV and sold in a few stores or on line. The marketing is a bit hokey - but its great for making really delicious smoothies - using fruits (fresh or frozen) yogurt, nuts, greens and other vegetables protein powder, nuts, seeds etc and make drinks that are very nutrious and quite tasty and easy to consume. The machine pulverizes everything. Easy to clean too. Don't give up hope - you still have dacogen to try or maybe a clinical trial. All the best to you.

[Hopeful]

I am sorry to hear about your husband's sufferings.

For night sweats, to avoid the complete bed remake, I use to have a waterproof pad or towel on top of the bed sheets. The next layer would be my own private bed sheet fold in half around me. Than another large absorbent towel, and than the regular bed blanket. That way, I would just have to swap out the towel and sheets under/on me, rather than the whole bed.

Since you mentioned Muscle Milk, I would recommend checking out other food alternatives marketed for ultra runners or endurance athletes. They are typically high calorie and easy to digest.

Be well!

[julielucas]

Thank you all for the wonderful tips. I'm going to look into the coconut oil, Cheryl. Jeff loves coconut so this may be a win-win!
Paul, we're experimenting with protein powders and canned fruits for now. He's neutropinic and can't have fresh veg or fruit. I know he'd love some tacos. Wonder how those would taste pureed? 😉
Hopeful, I thought along those same lines re: separate top sheets. I'm also looking into getting one of those "chillows" that stay cool no matter what.
Once again, thank you all!
Julie

[PaulS]

Hi Julie - sorry I didn't realize one couldn't eat fresh fruits and vegetables with neutropenia - However - when I was a kid I broke my jaw and had it wired and I couldn't chew anything - My Mom made me some of my favorite foods and made them into a puree - and I greatly enjoyed them. I still fondly remember the pureed breaded veal cutlets....I also remember enjoying baby food, which was easier to eat - some of it was quite tasty and was fairly satisfying - So I'd encourage you try and puree anything your husband likes - its all just as good mushed up. Good luck and all the best - Paul

[julielucas]

Oh Paul! I can't imagine a pureed veal cutlet! But ya know, I might as well try it. If he won't eat it, the dog definitely will. Re: fresh fruits and veg. According to the neutropinic diet you can't eat anything fresh, except meats. Everything has to be cooked beyond recognition and you have to avoid eating at street stalls and taco trucks. As you may have guessed, one way I cope with this disease is with humor. If I can get a chuckle out of my husband then it's a good day.
Hope you have an excellent day!
Julie

[PaulS]

Good to have a dog - you should share some with him/her anyway. The veal was delicious, although a little hard to eat without moving my jaw. The swear the baby food was good too.

As an expert in purred food, I suggest if you make the tacos, use more filling and less tortilla - if you need a more liquid consistency you can add water or better yet some kind of seasoned stock or soup and make it more of a taco soup - now that I think of it, you can make all sorts of soups and puree them with an immersion blender. Might also try a comfort food canned soup like tomato or cream of mushroom. Hopefully the variety will help - and there is always ice cream.

Glad you keep your sense of humor. As a patient, i know it is much much harder being the care giver than the patient. Your husband is a lucky man. All the best,
Paul

[bailie]

Paul, I don't know if I can completely buy into your statement, "As a patient, I know it is much much harder being the care giver than the patient."

[PaulS]

Ha - maybe so - you've been through much more than I have at this point - but I do think it would be worse in a way if I had to watch my wife suffer.

[Neil Cuadra]

My wife (the patient) had the toughest ordeal with years of treatment plus her bone marrow transplant, but we've realized that she remembers very little of the transplant, since she was knocked out, dazed, or asleep much of the time while I (the caregiver) remember every minute, every procedure, and every bit of discomfort she experienced. I'd say we both had a hard time!