can't taste anything except occasional sweet items

ammsnana

how long does this last. I am halfway through my projected chemo treatments....stage 4 peritoneal ovarian cancer. I am on Taxol and another one I can never remember the name of.. taking Phenergran for nausea, tried everything else and at least it works. But I am losing and losing weight. I prefer the Ensure over the Boost, but am really tired of that now, too. I am confined to a nursing home because I have to have someone with me 24/7 and my family and friends are spread out from here to yonder. I have an ileostomy that depletes my potassium and magnesium.....which can cause my heart to shut down. I have wonder family and friends who stay in touch with me online, but they don't have much direct contact info with the disease. We are hoping that I can complete the chemo by the first week of December and go down to Florida to stay with my cousin while having the reversal surgery and removal of the 'j' tube. After that I should be well toward a "normal" life. My problem is I simply love food. I love to cook and it is a passionate hobby. I am allowed to cook here at the Veteran's facility I am at in Pittsburgh, PA, but since I am unable to enjoy eating it, some of the enthusiasm for that particular hobby has been dampened. In my "normal" life prior to diagnosis, I am a disabled veteran from the first Gulf War. Managing that myriad of illnesses has complicated managing this one, and it has been set aside temporarily...which adds to the problem since the pain,etc hasn't "waited". Prior to this episode of cancer I had previously had uterine and cervical cancer 20 years ago. And, no, this one isn't related in any way. They are working on the assumption that this is connected to my Gulf War service since the DNA testing came back negative for the hereditary gene and the other individuals who were with me at the time in 1992 have all since become deceased due to various forms of cancer.The VA has taken a very aggressive stance in my treatment and paid for me to have my surgery by one of the best onc/gyn surgeons and subsequent care by other top notch doctors when complications arose. To date I have had 8 or 9 surgeries and have been in the hospital with the exception of 4 sporadic days since June 11, 2009. I am scheduled for chemo #4 this coming Friday and will have a CT scan afterward to measure our success so far. And there will be success!!!! My numbers have been really good after each successive treatment and my Earth Angels (group of family, friends from elementary through high school, and Navy friends) prayers and general emotional/mental/spiritual support)have been keeping up their jobs with great vigilance. My cousin is doing the Relay for Life (she has done it every year for over 20 years....but this year is adding me to her "reasons") in honor of me, her mom (Aunt Phala, ovarian, deceased 1982) and her husband, Jim (deceased 2007 kidney and pancreatic). We have plans to work on fundraisers when I get down to Florida with her at the holidays and then we have bigger plans to start a non-profit foundation in her husband's name. So..back to the original subject after my inane rambling....The taste thing is actually kind of depressing me. As I said earlier, I drink the Ensure with each meal sometimes as the entire meal and sometimes just as an added nutritional drink. Getting tired of it though. My cousin suggested the mixing it with ice cream and other various ways of jazzing it up, but my hands are tied without the proper tool or someone (relative or friend) who can go and get items from the grocery store for me. I also can still eat classic tomato soup, cream of mushroom soup, chicken and rice (no pasta...rice only), I suck on hard candy, eat ice cream and popsicles (blister sores not only all inside my mouth, but are now taking up residence in my throat. They gave me some stuff that is known by several different names like Magic Swizzle, Swish and Swallow, etc. and is a mixture of Benedryl, Maalox and Lidocaine in equal parts. That worked somewhat in the mouth in the beginning, but since I lost all of my teeth in my chemical exposure episode in Desert Storm, I have to deal with dentures which doesn't allow the stuff to sit or even reach the places it needs to. I have found that chloraseptic or a generic form actually works better for me in this advanced stage. The dentist here at the VA recommended it. Said she had good results from other patients using it. And it does seem to be working much better, although still somewhat limited by the dentures being in the way. Jello and other cool and slick things can sometimes be ok. I have GERD though from my original disability so sometimes those textures are impossible. With the ileostomy and problems with liquid stool The medication doesn't always get absorbed in the pill form I am on now (In preparation for going home in December). So I am just having to suck it up and deal with the pain and side effects...except the phenergran and I will absolutely kill them if they stop the iv push for that one!!!! LOL I read something on this site yesterday where someone else had a food/taste issue and they found it to be mostly salty/savory things that didn't taste right. I thought about that all day today and tried to check it out and that seems to be true for me and least some of the time. If anyone has any ideas on how long this is supposed to last - I will be finished with my chemo around Thanksgiving, but still have to go through other surgery to reverse the ileostomy and that could be all the way into spring before they feel comfortable in doing that. Especially since I will be transferring down to the Tampa area after the chemo is complete and will have that surgery down there. So....I am open to any and all ideas....or anything really. Thanks to everyone. Darla

BonnieR

metal taste
Hi Darla, Seems like one of the side affects of many of the chemos and a lot of other drugs. Ever since I have been on abraxane nothing seems to tast too good. Occasionally salty food taste good, like pretzels. It does clear up after you are finished with chemo, but can't remember how long it took a month or so if memory is working. Hugs n prayers Bonnie

saundra

L-Lysine
My oncology nurse suggested I take L-lysine to prevent mouth sores and I take it daily. Have never had a mouth sore. Can't tell if this is the reason, but was on Taxol/carboplatin for 9 rounds. Thank you for your service. Sounds like you have really gone above and beyond the call of duty. Prayers for you.... Saundra

LPack

sounds like a lot
Wow, sounds like you have been through a lot already. The only thing that sounds good to me after chemo is fritos! I had chemo Monday and still have metallic taste in mouth. Did not first time around, must have to do with which chemos we are on? And of course each of us is so different (remember we are each WONDEROUSLY MADE!).

In His Grip,
Libby

Mawty

LPack said:

sounds like a lot
Wow, sounds like you have been through a lot already. The only thing that sounds good to me after chemo is fritos! I had chemo Monday and still have metallic taste in mouth. Did not first time around, must have to do with which chemos we are on? And of course each of us is so different (remember we are each WONDEROUSLY MADE!).

In His Grip,
Libby

Fritos
Funny you mentioned Fritos, Libby. I don't know that I'll ever eat another one. One day while I was getting chemo, my husband brought some goodies to eat and Fritos was one of them. When he opened the bag, I just about lost it, and to this day, no Frito has passed my mouth! We are all different. And each are wonderfully made.

Blessings,

Marty

LPack

Mawty said:

Fritos
Funny you mentioned Fritos, Libby. I don't know that I'll ever eat another one. One day while I was getting chemo, my husband brought some goodies to eat and Fritos was one of them. When he opened the bag, I just about lost it, and to this day, no Frito has passed my mouth! We are all different. And each are wonderfully made.

Blessings,

Marty

so true
LOL! Stuff hits us each differently! Actually just had a few fritos when nothing else sounds good today!!

Libby