antoinettev3

Praise the Lord! Praise the Lord! I'm SO very happy for you and pray that all you tests bring this kind of good news. I'm doin' a little happy dance for you too. Sincerely, Antoinette

Fay, you and your family are in my prayers daily. God bless you and grant you peace. Antoinette

Hope it's ok to go twice I just couldn't resist this one Icy igloos injured innocent inveterate invertabrae issuing inconceivably icky ideas. Let's try "K"

Derek dropped doors down decks during dramatic dangerous downpours devouring donuts decisively. Let's try the letter "F"

1. Fruits 2. Article of Clothing 3. School Supplies 4. Flowers 5. Things at the beach 1. Blueberries 2. Bra 3. Box of Crayons 4. Bromeliad 5. Blue skies Let's try the letter K

Hi Jodi, As a fellow meso patient it’s wonderful to hear from another who is doing so well and beating the odds. Congratulations on 6 years and may there be many, many more. I’ve been dealing with meso on and off for over a decade. It’s a bizarre experience and at times overwhelming but most of the time it’s a royal pain. I’m the type of person who really hates getting thrown off track by any type of illness so something as life altering as cancer is particularly infuriating. I have tremendous faith in God and I’m blessed with an incredible husband who also shares my faith. Without the good Lord neither one of us could have gotten through this. I have also been blessed with being spared most of the treatments that any cancer patient faces. I only received radiation for 5 wks. last summer and those were the toughest 5 wks. of my life (the combo of rad, steroids and pain killers, that didn’t agree with me, were mostly to blame). There were days I prayed for God to call me home but He obviously had other plans and I am very grateful for that. The radiation eventually took away all the pain in my chest and I was able to wean off the other drugs and get my life back. There were times I really questioned the decision to do radiation but in the end my doctors guided me well and I’m so thankful to have such wonderful, caring physicians in my life. Their expertise and kind assurances were also a big part of my getting through this. Once I got through the treatment and the radiation fatigue finally wore off, all I wanted to do was get my normal, “boring” life back. In my 20s and 30s I was restless and wanted more excitement, adventure, fun. Now I’m just so happy for the simple, little things in life. Something as easy as reading a book was impossible for me most of last year because of the narcotics making me so dizzy. It was incredibly depressing and frustrating. Now that I’m better I can’t STOP reading. While my last scan had good and bad news what keeps me going these days is my faith, my desire to be here and a “boy am I BORED with dealing with cancer” attitude. I am also thankful each and EVERY day that I feel good and am not bedridden in pain. Even if there are aches and pains it is nothing compared to what I went through last summer and I never want to get complacent about it. Take care. Know that you are in my thoughts and prayers. May you have continued good health and God Bless. Sincerely, Antoinette

That was fun! 12.58 Seconds (once I got the hang of it). Antoinette

1. Things that are cold 2. Movie Titles 3. Things that are square 4. Item in the refrigerator 5. A drink 1. Mountain Tops 2. Match Point 3. Miter Joints 4. Milk 5. Mimosa Try...R

I am a mesothelioma patient and have been for over 10 years. Most of the information you'll find online about the disease is very scary and disheartening. Unfortunately most of the web sites are put out by law firms and they tend to promote fear and urgency in order to get more clients. While there is no standard treatment protocol there are treatments. It depends on the stage of the disease and cell type. I have only had radiation for pain management and that was just last year. Prior to that I had no treatment. My profile details everything. Please don't worry about your whole family dying from meso. It's still a very rare cancer with only 2,000-3,000 cases reported each year. There are people who worked with asbestos for decades who never develop the disease and there are some who do. Here's a great organization for meso info: http://marf.org Please know that you and your family will be in my prayers. Sincerely, Antoinette

I imagine that another PET scan could be ordered but your insurance wouldn't pay for it. Depending on the facility my PET/CTs have run anywhere from $3500 - $7800 each. I have them every 4 months and I make good and sure that the insurance has preauthorized them since the first one done wasn't and it took nearly a year to straighten out the paperwork. I agree wtih myrnalu that you should definitely get the second opinon before proceeding with the surgery. Good luck to you and know that you are in my prayers. Antoinette

Mashed potato sandwich (toasted white bread of course )with iceburg lettuce. You should have seen my Mother's face. Antoinette

I couldn't believe how tired I was during radiation and I slept a LOT. I use to joke that the cat and I slept about the same number of hours. The only reason she got to sleep more is she didn't have to get dressed and go in for radiation every day for 5 weeks. My oncologist had warned me that the fatigue would set in about 2 weeks into treatment and probably get worse as the weeks went on. He wasn't kidding. I've never been so tired in my life. My vitals were not the greatest either. My BP was up because of the steroid and my heart rate was around 100 from being SO out of shape. My appetite was only good because of the Decadron otherwise the nausea would have kept me from eating and my husband had to remind me to keep my fluid intake up. My husband was concerned too but the doctor assured us that as time went on the radiation fatigue would improve but that it would likely take as many weeks to recover as it did to get treatment and he was right. Has your Mom been checked for anemia? I was about a quart low even 1 month after treatment. They didn't transfuse me or give me any blood boosters just waited until my body made up the difference, which it eventually did. Is your Mom on any other medications? I found that the pain meds I was taking only made things that much worse. I can relate to how your Mom is feeling and if her doctors are not overly concerned then let her sleep. I know that's what I prefered and when I did feel up to it I would get up and do what I could or just sit with my husband and eat dinner. It would wipe me out sometimes but it did get better. I know the tendency of loved ones is to think that if we're in bed then things must be bad. My Mother and husband still refer to my time in bed as my being VERY sick when all I really was, was tired. I kind of thought of myself as sick too at the time but looking back I realize that my body needed the down time and I feel MUCH better now. I pray that your Mom's fatigue will ease up soon and that she will handle the chemo well. God Bless. Antoinette

I'm SO sorry that your mom is in this much pain and is not getting any relief. Does she see a pain management dr. or is her oncologist handling the medication? I'm assuming she's seeing a PM doc since she's on methadone. This is not a drug most docs are familiar or comfortable enough with to handle properly. Since she's using the Actiq lollipops has her physician considered using the Duragesic patch which is the same medication but in long acting form? When nothing else was helping my pain for more then an hour or two at a time they put me on the patch. It worked very well unfortunately because I am hyper-sensitive to narcotics I couldn't stay on it. While I'm not a stage iv patient I did experience very sharp pains in my left shoulder blade (that's the side my mesothelioma is on). I tried methadone, dialudid, duragesic, vicodin (the only thing I could barely tolerate) and a few other things I can't even remember. Radiation is what finally took care of the pain for me and I thank God everyday for it. As far as carbs/sugar and cancer; there is no conclusive evidence that sugar consumption makes any difference whatsoever. I have spoken to my own oncologist and my surgeon and neither felt there was any need to eliminate sugar from my diet. I'm not a real big sugar eater so its not a big concern for me but I can see if one needs to rely on Boost or Ensure for their meals it could be. One solution would be to make ones own shakes using a sugar subsitute or fruit to sweeten the drink. There is a wonderful low carb sugar that is natural called Whey-Low. Its made with fructose, sucrose and lactose in a combination which does not cause the sugar spikes that regular sugar does or have the nasty aftertaste that artificial sweeteners do. The owner of the company that makes it created it for his wife who is a diabetic. You can get more info at: http://wheylow.com I pray that your mom will get relief ASAP and she will be able to sleep through the night. I can relate to how awful that is and I woke my husband up many nights sobbing from pain (I'm not a crier either). Please keep us posted on her progress when you can. God Bless. Antoinette

My friend who has Stage IV ovarian cancer had a LOT of trouble with recurrent pleural effusions that were quite large. They could never get all the fluid out at once for fear of causing a pneumothorax. She would always get some relief from the 2 liters they could drain but it would fill right back up so they put an internal drain in and now she is feeling MUCH better. Her SOB is gone and her energy level is improved. Most recurrent PE's are handled with some sort of irritant being introduced between the pleural layers. Talc is the most common. This method can only be done if all the fluid can be drained before introducing the talc. In my friend's case that was just not possible and that's why she had the drain put in. Hopefully your Mom can just have hers drained and it won't recur. I hope she will get relief from her symptoms soon. God Bless. Antoinette

I'm all for holistic and alternative approaches to any health issue, especially when conventional treatments have failed or are not an option. Having said that I've seen far too many charlatains and huxsters come down the pike and while I believe in the placebo effect 100% I worry about what some people might be putting in their bodies. There is a great resource available called the Moss Report which thoroughly examines alternative treatments. The reports are costly and are customized for one's own cancer but much of the general info for the alternative treatments is the same no matter what type of cancer you have. A very kind gentle gave me a copy of his report for thyroid cancer so I could check out info on a clinic in the Bahamas that I was considering for my Mesothelioma. This report does include information on Cesium as well as hundreds of other treatments. If you would like a copy please email me and I can send the PDF file to you. Antoinette

The radioactive dye given for PET or PET/CT is not the same as is given for standard CT. It is actually a glucose solutuion with a radioactive tracer. This does not pose the same potential allergenic reactions as the dye used for CT. There would be no reason at all this should upset one's stomach. Some facilities have you drink a contrast medium and some don't. I believe the latest research suggests that large volumes of water work better then the contrast medium in this application. The goal of the PET scan is to determine whether something is metabolically active or not. On CT alone a spot could be scar tissue, an inflammatory process or a benign cyst, one can't be sure. With PET if these areas are cancerous they will take up a LOT of the glucose solution, if they're not they will take little or none at all. Inflamed areas of the body will "light" up as well but usually at lower levels. You are asked to refrain from eating primarily to keep blood sugar levels low and to keep digestive activity to a minimum. Certain parts of the body naturally take in more sugar then others (brain, heart, kidneys, bowels). Typically you will be asked to have a low carb or Atkin's type meal for dinner the night before if you're having a morning exam. I've also been told to refrain from exercise for at least 24 hours (some places say 48 ). The goal is to minimize all activity so false positives will not be an issue. All of that being said, on my last scan I prepped for it like I have in the past, only to have to be called back to do the scan again 2 hours later after having eaten high carb foods, drunk a whole bunch of coffee and running around. They assured me the test would be fine despite the food and coffee. Go figure. Hope this helped. Antoinette

I would have done the exact same thing and have in fact done it with my Mom (she's not ill but is a world class worry wart ). Anticipatory anxiety is the worst and should be avoided whenever possible. What good would it have done if she had known? She would have had it on her mind, possibly causing her great stress and that wouldn't have been good for her health. I think you did the right thing and thank goodness that your results were normal. Sincerely, Antoinette

Your words were perfect. What an incredibly kind person you are to take the time to help this woman. My Grandmother use to ask all the time why God wasn't taking her. For over 10 years every time I would see her she would say that she's ready to go but God wasn't ready for her. She finally passed away at 96 after suffering a stroke and while I miss her terribly I'm at peace knowing she's with the Lord. Everything is in His time. I hope that your words will help this woman to try and find the positive in her life even though she can't do what she use to. Bless you for caring. Antoinette

I'm so sorry that your mom is suffering from such pain. I took Dilaudid (4mg)for a while but found that it didn't work as well as Vicodin for me. A higher dose would likely have worked but the side effects were too bothersome for me. I'm not sure what the max dosage is on it. Fentanyl patches works very well but again I could not tolerate the side effects. They are considered long acting pain meds vs. short acting ones like Dilaudid, Percocet, Vicodin, etc. that you have to take every few hours. Thankfully most people are not like me and do not have such a hard time with narcotics. Go to: http://www.healthboards.com/boards/forumdisplay.php?f=100 There is tons of info on pain meds there. Most of the people posting suffer from chronic pain conditions other then cancer but they still offer a lot of experience with these powerful drugs. I pray that your Mom will find a drug that works for her and that the radiation treatment will elminate or at least reduce the need for pain medication. Good luck and God Bless. Antoinette

Thank you to everyone for your kind words, prayers, encouragment and premission to vent. It's incredible knowing that all of you are out there and that we all care for one another so much. The treament went well and it was a lot faster and easier then I thought it would be. I also met with the social worker who helped me put a few things into perspective. The doc was incredibly kind and assured me that he felt any side effects I might have will be minimal. Unfortuantely part of my stomach will be hit but he didn't think it would make me really ill just a bit queasy if at all. Sure hope he's right about that. I'm a real baby when it comes to getting sick. So one down and 24 to go. Hopefully time will fly by and I'll be on the other side of all of this before I know it. Thanks again for being there. Y'all are the best!!

Hi Everyone, Well it's my first day and I'm feeling sick to my stomach from a Vicodin hangover. I had hoped to wake up with minimal pain and a good attitude but these narcotics just make me feel awful and I'm having a really hard time coping this AM. I know there's nothing to be afraid of with the treatment. It's not going to hurt and will only take a few minutes but I just feel awful and want to crawl back into bed. I haven't felt this wimpy in a LONG time and I just HATE it. I just needed to vent and my apologies for sounding like such a child but it's been a rough weekend of pain and now I have to drag myself everyday for the next 5 weeks for treatment that I have no idea if it'll do any good. For those out there who have had positive experiences I would love to hear from you. Thanks for letting me cry on your collective shoulders. Antoinette

Where do I sign up? I have family that lives in Kifisia and they have a summer place in Logos. I haven't been back there in more years then I'd like to count (over 20). I would definitely be into this. Antoinette

Thanks for the warm welcomes. Just wanted to clarify that I am doing this under the supervision of both my oncologist and pain doc. I wish I could just stop taking these pills and be done with them but know that an adrenal crisis is a VERY dangerous thing. Cindi o'h: I will inquire about the Tizanadine. Muscle cramping seems to be one of the biggest problems I'm having. Trish: How did your husband feel going from 8mg to 1mg a day? Did he supplement with other pain meds? I at one time was on 4mg/day which gave me complete pain relief and enough energy to run a marathon! Wish I could stay on that dosage w/o the side effects. Thanks again for the replies. Antoinette

I have been on Decadron 2 mg /day since April for inflammatory pain from my cancer and have decided to wean myself off the drug because of the side effects. The pain relief was excellent and before cutting back on my dose I was relatively pain free and rarely needed my BT meds (5/500 Hydrocodone). Since cutting back to an alternating schedule of 2mg/day, 1mg/day I've had a lot of flare in pain. The BT meds are not touching it on most days. The pain is more spastic then anything else and it feels as though a good muscle relaxer would be more appropriate. I am seeing a radiation oncologist on Thurs. to see if that might be an option to manage the pain and I have my follow-up with the PM doc on Friday. Anyone else out there who has been through the whole getting off of steroids thing? How long did it take you and what was it like? What type of pain did you experience? I am having a LOT of trouble with gas and bloating and have been told that the Decadron is to blame for this as well. I thought that it would get better with the reduction in dose but it actully is worse. Anyone else out there have troube with that aspect of it? Any and all repsonses will be greatly appreiciated. I find myself not being able to function very well on the days I take the lower dose. Today I had to take 3 LONG naps because of the increased fatigue and the pain. I know that there is going to be a time of adjustment but I'm trying to get a feel for how long before I see the light at the end of the tunnel. My oncologist tells me that I should find myself starting to break free of the side effects once I get the dose down to .5 mg a day. Unfortunately I can't get down to that dosage fast enough because of the flare in pain. I'm suppose to cut back my dose next week to alternating 1mg/day, .5/mg day. With the amount of pain I'm experiencing now I can't imagine how awful it will be on the lower dose. Would a long acting med work better then the Hydrocodone I'm using now? Right now I take OTC meds, the hydro when needed and use a heating pad or ice pack to manage what's left over. The only thing that seems to work other then the steroids is sleep when I can get it. Hope there's someone who can shed some light. Thanks in advance. Antoinette