CancerCompass message board discussion started by K. C. on 3/16/2008 http://www.cancercompass.com/message-board/message/all,22047,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello Everyone;I am preparing to leave for Philadelphia shortly for my upcoming MELPHALAN infusion, auto stem cell transplant and T-cell re-infusion this coming week. I am a strong believer in a positive mental attitude! And equate knowledge with power and success. I also firmly believe that there exists a higher "spiritual" entity that leads us in our daily lives as long as we accept that guidance.What I am requesting from anyone who wishes is to send me some positive energy this coming week. How you send it is your own personal belief. But I feel that we are a tight knit family and combining all that energy towards a singular goal can have no detrimental effect!I thank you in advance and wish you all the best in your own journeys.Take care;Kevin  K. C. Sun, 16 Mar 2008 00:00:00 GMT Good Luck Kevin!Our thoughts and prayers are all with you! AngelBaby Sun, 16 Mar 2008 00:00:00 GMT Hi Kevin,You know, from messages yesterday, that our thoughts and prayers are with you as you have your transplant.  We will be praying and thinking of you not only this week, but until you are through this whole process.  Your attitude towards all of this has been an inspiration for us and has given us hope.  Your information has helped us, even when it was directed to another cancer compass friend.  I can't thank you enough.  Please stay in touch whenever you can.  Best of luck and all our prayers!Jan (WBT) wevebeenthere Sun, 16 Mar 2008 00:00:00 GMT God's blessings are with you and your strength will come from Him.  I know your heart is in the right place and that is most of the battle.  My prayers are with you.Phyllis PhyllisDiane Sun, 16 Mar 2008 00:00:00 GMT  On 3/16/2008 K. C. wrote:Hello Everyone;I am preparing to leave for Philadelphia shortly for my upcoming MELPHALAN infusion, auto stem cell transplant and T-cell re-infusion this coming week. I am a strong believer in a positive mental attitude! And equate knowledge with power and success. I also firmly believe that there exists a higher "spiritual" entity that leads us in our daily lives as long as we accept that guidance.What I am requesting from anyone who wishes is to send me some positive energy this coming week. How you send it is your own personal belief. But I feel that we are a tight knit family and combining all that energy towards a singular goal can have no detrimental effect!I thank you in advance and wish you all the best in your own journeys.Take care;Kevin  Hi Kevin  I do pray the Lord sends His angels to guide your path. May the Dr and health care workers protect, assist and care for you with knowledge, faith and compassion.  Here are some quotes from the Bible.O Lord my God, I cried out to You for help and you healed me.  Ps 30:2Is anyone sick?  He should call the elders of the church and they should pray over him and anoint him with oil, calling on the Lord to heal him.  And their prayer,if offered in faith, will heal him, for the Lord will make him well....James 5:14-15Surely He took up our sickness and carried our pains...But he was pierced for our transgressions, He was crushed for our iniquities; the punishment that brought us peace was upon Him and by His wounds we are healed.   Isa 53:4-5Beleive in your prayers and those who pray for you.All the best Fish1 Sun, 16 Mar 2008 00:00:00 GMT  Dear Kevin: I send you special healing and 100% success with your proceedure.I will do so each day. You have helped so many people on this site.  I know you will do just wonderfully.  We look forward to return with fantastic news."A star fell from heaven its power to give, Bless Kevin tonight allay all his fears, Heal him and keep him safe by your side, To recover rejoice and to feel so alive.  Let he Healing begin, the energy flow, A long healthy life all blessings bestow" MMS 3/16/08 On 3/16/2008 K. C. wrote:Hello Everyone;I am preparing to leave for Philadelphia shortly for my upcoming MELPHALAN infusion, auto stem cell transplant and T-cell re-infusion this coming week. I am a strong believer in a positive mental attitude! And equate knowledge with power and success. I also firmly believe that there exists a higher "spiritual" entity that leads us in our daily lives as long as we accept that guidance.What I am requesting from anyone who wishes is to send me some positive energy this coming week. How you send it is your own personal belief. But I feel that we are a tight knit family and combining all that energy towards a singular goal can have no detrimental effect!I thank you in advance and wish you all the best in your own journeys.Take care;Kevin   mmsurvivor Sun, 16 Mar 2008 00:00:00 GMT Kevin go Kick some ass !!!!  I will be thinking of you YES be positive, strong and succeed!!! The one thing you have to watch is fever, Infection is the enemy. You are in the middle of an ocean with a flashlight. They sell a device that you wear on your ear ,this device transmits your temperature to your computer and the computer forwards the temperature to anywhere you want. I will use this system for my brother so i can see his realtime temperature and if it goes above a preset(100.4) then my computer will sound a alarm so i can pick him up and return him to the hospital. The antibiotics that you receive at the hospital have "holes" in them. therefore you do not want to be exposed to anything. If any comes to see you have them put on mouth protection and keep distance. THE VERY BEST WISHES TO YOU !!                                        PERSAVERANCE !!!!  zazu1234 Sun, 16 Mar 2008 00:00:00 GMT The very best Kevin.Craig  photog Mon, 17 Mar 2008 00:00:00 GMT Good Luck Kevin!We will all be saying prayers for you!! Keep your spirits up :)Kahra luckykl Mon, 17 Mar 2008 00:00:00 GMT Dear Kevin ~~What goes around comes around and you have sent so much goodness to so many that you are in line for goodness to come to you!!  You have certainly done your research and set this up in the most win - win way possible -- my thoughts and prayers are always with you, and will continue in unison with all of the others from this board who are supporting you.  All of this positive energy coupled with the belief in help from above is surrounding you mate -- I can actually visualise it in a bubble around you!!  I hope that the 'down' time is as short as possible and that you rapidly progress to the point where you can return to the comfort of your own home.  Best wishes to you and your family --my waking thoughts will take over when the ones from the northern hemisphere are sleeping -- you will be constantly in our thoughts and prayers. Love, Cath poppy/cath Tue, 18 Mar 2008 00:00:00 GMT Go on, we'll be waiting for you to come back... YanaMom Tue, 18 Mar 2008 00:00:00 GMT Dear Kevin, Best of luck to you! God Bless. Nancy NancyLT Tue, 18 Mar 2008 00:00:00 GMT From Anna, Hi Kevin, Hope all goes well for you. We believe that prayer has helped keep Dad with us for almost 10 years. Your friend,Anna   Anna9563 Wed, 19 Mar 2008 00:00:00 GMT I wish I could send angel's feathers to cushion youFairy's wings to carry youand the power of natures spirit to heal youBlessings and best wishes love from Jane x JaneMGUSuk Thu, 20 Mar 2008 00:00:00 GMT Greetings Everyone;I first wish to apologize to everyone for taking so long to respond to your kind words. It took a visit from my son over the weekend to show me how to work this laptop and WiFii. These are amazing machines as long as you speak the correct language, otherwise they're just plain stupid!I want all of you to know that I read your inspiring comments daily to keep me motivated and on track. Believe me when I say that they helped me to remain positive and focused on returning to a normal life.To highlight my journey:Sunday (3/16) I was admitted. Not much went on. My wife and I went to a late lunch and she left for the week.Monday I was given my MELPHALAN I.V. took about an hour. Some sleep. Not much other than the usual daily blood, vital, Drs.' visits, etc.Tuesday happaned exactly as they told me it would: "You're going to wonder why you're here." They started me on a 12 hour I.V. drip. I'll discuss this later.Wednesday around noon I was given my Stem Cells back. Had 5 medical staff in the room. They store the stems in liquid nitrogen and then thaw them in a warm bath right at the foot of your bed. It kind of reminded me of those Oriental restaurants where they cook right at your table. The teamwork between the Dr. administering the stems and the technician thawing and assisting was impressive. This Dr. used the largest syringe I have ever seen to suck my stems out of this bag, turn a valve and then push them into my I.V. The bag wasn't empty so they had to repeat the process. This only took perhaps a minute. I had 2 bags so the repeated the whole thing again. All told, it only took maybe 20 minutes. Back on another 12 hour I.V.Thursday not too much happened. Starting to feel some nausea at times. Also starting to lose the taste for food. If fact just the smell of it turns my stomach.Friday afternoon I get my T cells back. (I had volunteered for a trial study which in theory would make my body recover quicker with less side effects.) They hook me up to a large bag filled with what appears to be milk! When I question them on this I'm told that that's my T cells. Being that they're a subcomponent of my white cells gives them their white color. Reason our blood looks red is because they're are soooo many red cells compared to whites. The infusion takes about 20 minutes. Now I have 7 hospital staff in my room at this time. They're waiting around to see if any complications develop. About 15 minutes out my arms start shaking a little. The Dr. tells me that's the rigors starting. A little while later my arms are really shaking. They start layering on the blankets. But I tell them I'm not cold. And I wasn't, my arms were warm to the touch. Not long after that my teeth start chattering like I was standing outside naked in a blizzard! The nurse gives me a shot and I sleep until 9:00 that night. Let me return to that 12 hour pre and post I.V. I mentioned before. These Drs. want my stem cells to have the most inviting environment possible so that they can grow and mature undisturbed.That only makes sense, right? So what do they do? They test your blood/urine and determine your present pH level. Anyone see where I'm going with this? They then give you the I.V. solution to adjust your level to that which is most compatible for these stem cells' growth. Now what level do you think is most conducive to their success? That's right, 7.0 nuetral! These FOOLS continue to tell us that diet has no effect on cancer and yet in practise they know otherwise! Get your pH levels to 7.235! Cancer doesn't thrive in it. And don't let any Dr. tell you differently. Diet is important!Saturday my family visited. More nausea, but not because of them. Started to get diarhea. Gave me pills for both. My wife brought down some of her home made chicken soup. First good meal I had in a couple of days!  Sunday (Easter) not much going on. Sleeping alot. Still trying to make my laps around the floor. Monday I turned the BIG 5 0, in a hospital bed. Not exactly the dreams I had of 20-something vixens in satin sheets!  Starting to develop slight sores in my throat. I was gargling hourly with saline but that only helps the mouth area. They gave me some NYSTATIN to rinse and swallow. Tuesday still sleeping alot. I had a piece of pizza last night. Wow, did it taste good. I actually enjoyed eating it. In closing, I again want to thank you all for your support. I only wish I didn't have to do it through something so impersonal as an e-mail. I ask for your continued positive energies this week as the Drs. tell me this is the tough one! My blood levels are scheduled to bottom out Thursday/Friday and then hopefully begin their upward rise. Similiar to a Phoenix, I guess! God help us all!Take care;Kevin  K. C. Wed, 26 Mar 2008 00:00:00 GMT Hi Kevin -- this has got to be the best message on the board -- it would be so very helpful to anyone facing a transplant!  There is a fellow on You Tube who is doing a visual diary of his transplant and treatment, but I do believe that you have captured the experience perfectly!  I do hope that this week is not as bad as predicted, but knowing that it is coming - and that it will pass - will make it tolerable, just!  Keep walking as much as you can, but don't be a martyr about the whole thing -- lying in bed for a day or two could help your body to recover - give it a chance.  You don't have to sit up all day everyday -- you are in hospital for a reason - to allow your body to recover from this treatment.  However, you are the best judge of what is right for you and after months of listening to you here I would trust your judgement, so go for it!  Belated 50th birthday greetings!!  It certainly wasn't the way most people would celebrate their 50th, but in your situation it was probably the best possible situation and will lead to many celebrations of future birthdays!!  Our thoughts and prayers continue to be with you -- I appreciate how you enjoyed your wife's chicken soup -- my husband couldn't make it for me, but after weeks of being unable to eat he was able to buy chicken/corn soup from the best chinese restaruant in town and it really hit the spot! Our best wishes continue to be with you, Cath poppy/cath Mon, 31 Mar 2008 00:00:00 GMT Hi Kevin,Hope this message finds you with your counts going up and recovery on the way!  I have read and re-read your account of the transplant and I have some questions.  First, how do you get your pH levels at 7.235?  I have seen diet mentioned on several sites, but have not read all the messages yet.Second, your transplant was done all in one week.  During our short (and I do mean short) talks with the docs, they talked like he would have chemo one week, transplant the next week and then weeks of recovery.  We may have missed something, as I said, the talks were short and we are just beginning the process.  The doc said the chemo would be pretty well out of his system before cells were returned.  Does the chemo damage the returned stem cells when it is done so close together?  Also, I am most interested in the T-cell infusions that you spoke of.  Let us know if it did what the docs wanted it to do.You're in our prayers, stay positive and recover quickly!Jan    wevebeenthere Mon, 31 Mar 2008 00:00:00 GMT Good Afternoon Cath;There is a fellow on You Tube who is doing a visual diary of his transplant and treatmentDon't know if the public could tolerate my ugly mug on a video. I'd have to issue "motion discomfort bags" like they do on the airplanes. Maybe I could get Brad Pitt to star in it? Of course, people have told me that I bear a strong resemblance to moviestar Sam Eliot. (Yeah, right, in my wife's dreams!)Belated 50th birthday greetings!!  It certainly wasn't the way most people would celebrate their 50th, but in your situation it was probably the best possible situation and will lead to many celebrations of future birthdays!! Thank you! I agree that this small inconvenience hopefully will pay future rewards later on. Our thoughts and prayers continue to be with youThank you and don't lower your guards just yet. There's plenty of recovery left in front of me before I can tell this hospital good-bye.Take care;Kevin K. C. Mon, 31 Mar 2008 00:00:00 GMT Good Afternoon Jan;First, how do you get your pH levels at 7.235?  I have seen diet mentioned on several sites, but have not read all the messages yet.Please keep in mind I am away from me binder. My Gospel. So alot of what I will tell you in from memory. You can GOOGLE acidic and alkaline foods. Print out the lists and try to eat accordingly. As has been mentioned here multiple times, Cancer loves an acidic environment. And it can't tolerate an alkaline one. Get some urine tests strips from the pharmacy and every morning, or more often if you wish, test you urine to see what color you are. As long as you're in the green range you're above 7.0 I believe you would need a meter to determine 7.235. Your eye isn't that good. But you will see that what you eat does have an effect on the "color" of your urine.Check the archives here at CC. It's worth the time reading!Second, your transplant was done all in one week.  The actual transplant itself, reinfusing previously taken stem cells, was done in 2 hours! The prior "Harvest" of taking those stem cells for storage was done also in 2 hours. However, not within the same week. they talked like he would have chemo one week, transplant the next week and then weeks of recovery.  I was given MELPHALAN on Monday, 3/16, my stem cells were returned to me on Wednesday, 3/18. The chemo I was given is serious, serious stuff. But apparently it does its damage in 24 hrs. and then the body flushes it away. Another thing that intrigues me about the chemo is the side effects take about a week to surface. You would think that the vomiting, diarhea and g.i. sores would occur closer to the adminstration of the drug. Also, I am most interested in the T-cell infusions that you spoke of.  Let us know if it did what the docs wanted it to do.Can't tell you too much. Only memory. Something in me make up allowed me to participate in this study. AD34,CL34 something like that, qualified me for the study. It's very similiar to the "blood doping" the Olympians did back in the '60's and '70's. They took out my T-cells prior to chemo and them froze them and returned then on Friday, 3/20. Can't answer whether they did there job. However, on 3/21 my WBC were at 2.6. On 3/22 they rose to 8.2! But on 3/23 they fell to 3.9. And have steadily risen where today they're at 6.0. The study is closed yet. I'm only #10 in a 22 patient trial. I don't believe it closes until Dec.You're in our prayers, stay positive and recover quickly! Please keep me in them. I'm not out of the woods yet!Take Care;Kevin K. C. Mon, 31 Mar 2008 00:00:00 GMT Hello again Kevin,Forgot to wish you a Happy Birthday in my last message!  Thanks for responding to my last message.  My kids tell me that I don't get my point across too well and that seems to be the case in my last message.  I knew that you had stem cells harvested a while back, then went back in for the transplant.  Now that you have explained that the chemo does it's job in 24 hours, I understand why the stem cells were transplanted a couple of days after the chemo.  My experience with chemo (totally different kind) was that I felt okay the first couple of days, then felt like crap for a week and a half, then felt pretty good for a few days, then had to start the process over just when I began to feel better.  My chemo was meant to work for about 3 weeks.  That's why I thought the chemo would damage the transplanted cells.Well, I've taken enough of your time today.  Take care and thanks for the information.Jan  wevebeenthere Mon, 31 Mar 2008 00:00:00 GMT Good Morning Jan; "My experience with chemo (totally different kind) was that I felt okay the first couple of days, then felt like crap for a week and a half, then felt pretty good for a few days, then had to start the process over just when I began to feel better." This also may work with MELPHALAN. However, I was on HIGH DOSAGE MELHALAN. All my chemo was administered within a 2 hour drip.Serious stuff in a short period of time. I believe I recall reading about regular dosage MELPHALAN. This took place over a 12-24 hr drip. I hope this answers your concerns.Take care;Kevin K. C. Tue, 01 Apr 2008 00:00:00 GMT Greetings Everyone;I don't know how to locate this follow up closer to my original one on page 2, perhaps the geeks at CC can transfer it or attach it to my original, I can only hope.Wed, 3/26, still very tired. Very little taste in the food that I'm consuming. I want to touch on my blood counts so you can see how all this chemo effects your numbers.When I was admitted, 3/16, my whites were at 2.8, my reds 9.5 and the Plates 357. But there's a sub component of the whites that is so high the Drs. don't even bother testing cause if the whites are norm these are sky high. They call them A N C. Don't remember what that stands for. On 3/21 my whites were 2.6, but on 3/22 they were 8.2! Only numbers that have risen. Reds fell to 8.7 and Plates at 174. Why the HUGE increase? If you'll recall, I had that T cell infusion of Friday, 3/21. Yes, it made that much of a difference! 3/23 Whites 3.9 (imagine what they would have been w/o the infusion?) Reds 8.8, Plates 155. The A N C is now starting to be measured, 2496. 3/24 Whites 5.3, Reds 8.4, Plates 118 and A N C 900. No large changes in any number during the next dat. But, on 3/26 Whites 7.8, Reds 8.9 Plates 58 and A N C ZERO. No visitors! Mask in or out. Wash hands often. Infection is a serious possibility. Even though the White cells are high the Drs. aren't certain they haven't been masked by the T cells infusion and they aren't taking any chances. 3/27 Whites stable, Reds 7.5, you know what that means! Plates 40, A N C ZERO. I get 2 units of Red blood cells. I can't stop walking around the ward. Way too much energy in those little bags. 3/28 Whites 6.7, Reds 11.4, Plates 21 A N C ZERO. 3/29 Whites 6.8, Reds 9.1, Plates 11 A N C 100. Drs. are happy, A N C is starting to move. They want to see how much from now on. 3/30  not much movement, except my Plates 6. 1 unit of Platelets coming right up. 3/31 Whites 6.0, Reds 8.0 Plates19, A N C, ooooppps, somebody in the lab forgot to test for them. Yes, there's a few of them working here also! I also receive another 2 units of Red blood cells. 4/1 Whites are at 9.0, Reds 10.5 Plates 18, A N C 2800! 4/2 Whites 11.7, Reds 10.5, Plates 22 A N C 4700. Dr. tells ol' K.C. "Your numbers are holding, make arrangments for D.C. I tell him to give me 2 units of Reds and I'll walk home! What amazed me about seeing the blood counts charted everyday in my room was how the chemo would just devour the cells. Even with an infusion, 2 days later and the numbers were low again. This chemo was just a cell eating machine. The Drs. still don't what to say to my questions about my White blood cell numbers and the T cell infusion so I'm going to ask your patience in asking me any questions. This study is too new for any results yet. However, If given the the chance to participate in it I would strongly urge you to. I saw what the chemo did to my other cell counts and it only stands to reason it would have devoured the Whites cells also if not for the infusion. Perhaps in the near future, they'll take units of the other blood types outs and re infuse. Maybe they'll shorten recovery to days instead on weeks!In closing, I again want to thank you for all your support, inspirational words and prayers. But the next time you hear from ol' K.C. he'll be sitting on the couch playing with Brindle's ears and enjoying some HOMETIME R. and R.Take care;Kevin K. C. Wed, 02 Apr 2008 00:00:00 GMT