CancerCompass message board discussion started by Darren on 6/20/2005 http://www.cancercompass.com/message-board/message/all,2290,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with ALL in August 2003, I am a rare one up here in Canada. I have not had or needed a Bone Marrow Transplant. I have gone through the 2 year protocol for ALL almost to it's entirety (I finish on July 27/05). I had Cranial Irradiation (9 treatments) in Dec.03 and for the past year almost have taken 125mg of Prednisone (day 1- 5) for 5 days, I get a shot of Vincristine (day 1) once 2mg., and 50 mg. of 6mp(mercaptopurine) for 28 days in a row (day 1- 28 then repeat cycle it has been this way for the whole year so I take chemo - 6mp- everyday) My doictor actually reduced the 6mp from 120 mg/day to 50mg/day due to elevated liver counts and she totally dropped Methotrexate completely for the same reason. My monthly blood counts are decent wbc is usually between 3 -4 and my absolute newts are always between high 1's to high 2's. My ALT fluxuates from low to mid 100's and down beween high 60's to high 70's so overall pretty decent and oh yeah hemoglobin is always 150 -200 and platelets 150-220 but my feritin is higher at around 1000 - 1500 (each month is different) I am finding that as I get closer to finishing my two year journey with this cancer (it is my first time ever so it was a shock to my wife and I) I have been having anxiety attacks and my mouth and throat are so dry that sometimes it is unbearable. Am I alone with these symptoms or is it common and is there anything you can take to combat the extreme dryness because I drink more water than a camel and it isn't always enough yet allmy doc. says is keep drinking lots of water. Darren Mon, 20 Jun 2005 00:00:00 GMT Darren, My husband is in remission from ALL. He was diagnosed 06/03 at age 36. Did not have a BMT. Looking over your treatment plan, it looks pretty much the same as his. He just finished his 2 years of chemo on 11/09/05. He went through all the Hideous treatments like a champ (induction, consolidation and maintenance therapy) In the last 8 months, he developed acne breakouts 1x per month, right after his monthly Vincristine injection. It is like a Shingles outbreak. He takes antibiotics for that. It's like clockwork. Hopefully,that will subside soon. We have just been celebrating the completion of his chemo the last few weeks, trying not to hold our breath. Paranoia tends to creep up with each headache etc!! However, in the last few days he has been complaining of a tender and sensitive feeling in his lower right hip at the small of his back. I placed a call to his Dr to run it by her. Did you have any post treatment aches and pains? Do you still have the dry mouth? Congratulations on your health. Beth Beth73 Mon, 05 Dec 2005 00:00:00 GMT Beth, First off, congratulation to your husband and to you as well, I know I couldn't have done so well if it weren't for my incredible wife!! When a spouse is diagnosed with cancer I firmly believe it is like you both are going through it except for only one of you is getting the treatment side of it, lucky us lol!!!! That is awesome that he didn't need the BMT, did he have a match just in case though, I am extremely lucky enough that one of my brothers(I have 3 of them) is 100% perfect if things decide to go south on me ~ they won't though(go south) because I am not afraid of cancer and I know it is scared of me so I am very confident it will leave me alone for a lot of years!!! I know you guys have heard this a lot but it truly is one day at a time and if you hadn't had time yet to realize how much this horrible disease will change your life, you will and all I can say from my perspective is sit back and enjoy this ride that I always refer to as my new life!!! In response to your husband having acne after vincristine, I have/had a rash around my face, more on the sides by my nose that looks well like a rash, not really acne but it is red looking and drys up a lot. Understand that we have had a lot of crap in our systems and it is going to effect the skin and other parts of the body. I still get body pain, in the same area as your husbands and my knees are sore a lot and just general aches and pains . I just started to take yoga and I am hoping this will start to get rid of some of the discomforts that come with being a walking chemo billboard lol!!! I have been chemo free for a little over 4 months now and I am still dry, not like I was but every once in a while I tell you!! I have a difficult time swallowing certain foods, especially bread, but you need to know that the chemo drys up our gastrointestinal tract and makes for a lot of fun. It will get better and it is over time so take the good with the bad. How is your husbands energy levels, in a word, mine suck!!! They are getting better every day but I am talking baby steps better, just have to remember that Rome wasn't built in a day and don't expect things to just return to normal like before, because they probably will never be normal again, besides for me I don't want normal, that word no longer exists in my vocabulary, Iwill become better than normal or new and improved is a good way to phrase it!!! I am very very happy for you two, don't sweat the small stuff, yet don't hesitate for a second to call your doctor if something seems different and don't stop asking questions until you get to the heart of the matter and don't take no for an answer, if you call and can't get in to see him/ her, demand to see them, people will listen when you are adamant, we've been down this road a couple of times!! Where abouts are you guys from, I am from Canada and I look forward to hearing from you again!! Congrats and take care, Darren Darren Mon, 05 Dec 2005 00:00:00 GMT Hi Darren: Thanks for your kind words and support! We do cherish every day now, and appreciate the fact that this has forever changed our lives, for the better at that! Andy has 3 full blood siblings. They were all tested, and one of his brothers is a little over 55% of a match if I recall. Not perfect. The good news is that we just wont go down that road! Now that you describe the red rash, that shounds more like what he has..and it has definitly got to be from all that toxic crap..I know it casues his alot of discomfort for him. My husband really did not have alot of side effects throughout like nausea, dry mouth excessive fatigue. However, the spinal taps really messed him up. He would get the injection, and pretty much be flat on his back for abot 3 or 4 days after. He would have the sensation of being on a boat, like his equalibtiam was all askew. Really bad head aches too, at that point. Thanks for recognizing that this is somethng that you go through together..it was really hard(to put it lightly) to watch my husband get poked, proded, poisoned, frightened etc etc etc... Oh, I realized that Andy was 35 at his diagnosis, not 36 as I stated above..as his 38th Bday is next week! We had an extra challange as well... We found out he was sick, after he had pretty much lost all energy, and was really fatigued. Loss of breath going up stairs, could not exercise the way he had only a few months before. The GP said his WBC was really off, and his hemoglobin count was at an alarming 4..and she could not understand how his was even standing! So, she refferred us to a hemotologist for further testing ASAP...we thought he might have hepititas, as he surfs and the ocean gets septic at times. So, I remember the two us of walking up to the Dr.'s office and seeing the word "Oncology"..It hit me at that point that this could be really serious. I had not put 2 and 2 together with regards to Hemotology and Oncology. All very very sereal..she did the bone marrow biopsy and 2 days later we got the news. He was a stage 3, so he immediatly started treatment. Oh, the kicker... I was 7 months pregnate with our first baby when we found out! So, we were (are) first time parents dealing with all of the happiness, excitment, anixety, and fears of becoming parents when the bomb was droped. We just switched into battle mode and faced it all head on...what else can you do? Of course there were enevitable moments where we could not get out of bed or just needed to fall apart...but for the most part we just kept putting one foot in front of the other...a new born helps with that! In retrospect, the timing of our daughter was perfect (I must be crazy to say that knowing what we have been through!) because she really kept Andy focused and positive. Plus, we saved her stem cells, in the event we should ever need them..Wow, I am exhauseed now! We have an amazing amazing Dr. Her name is Dr.Sabina Wallach...and she saved our lives.. Along with endless family love and supprot. We live in San Diego and he was trated at Scripps La Jolla. Where are you from in Canada? We have friends and some family in various places up there! Do you have children? I am going to ask Andy to read our converstaions and see if he would like to partake... Cheers..look forward to hearing from you! Beth Beth73 Tue, 06 Dec 2005 00:00:00 GMT Beth, It was great to hear back from you so soon!! Andy and I have a lot in common, first off,the obvious one, we have the same cancer, second I was 34 on diagnosis day and I just celebrated my 37 birthday on Saturday (Dec.3) freaky hey!!! I still have the skin rash on my face, just not as bad as it was.I found that everytime I took the prednisone(I hate prednisone) my skin would clear up instantly and then after the week or so when that sh## wore off the rash would come back, oh well, the joys of chemo!!! My wife would always joke about crushing the prednisone and and making a cosmetic wonder pill out of them and sit back and enjoy the rewards lol!!! The joys of learning about cancer, I had a cough for about 6 months and I was working for an oil company in Northern Alberta (we are from Lethbridge Alberta, 2 hours southwest of Calgary) and I would work in isolated places and be in camps for a month and sent home for a week!! Good money, but no life, and each time I came home my wife would send me to a clinic about the cough and it was always "you have a cold/flu take this and it will go away" kind of thing. Finally on July 30/03 my wife sent me to the emergency at the hospital here and told me to demand a chest x-ray because I was leaving the next day to work up north for a month again. She saved my life, probably, the e.r. doc. was at first pissed at me for not having a recquisition from a doctor to have a chest xray and I told him by the way(I was getting mad and I don't get mad) I have been watching this lump(Lymph node) grow in my collarbone area and it doesn't hurt but...instant chest xray and blood work and ct-scan and he told me that isn't his specialty, but I should call my wife and tell her to come down because I will be here for a while, I said what is going on?? and he said, its not my area, but I think you have CANCER!!! To which I said bullsh##!! An internal doc. here confirmed it is cancer and I either have lymphoma or leukemia and I will have to go to Calgary for treatment asap and that our lives will be on hold for at least a year!!! So when in this period of time are you allowed to breathe exactly hey!! I never knew what an oncologist was before or a hemotologistbecause I have never been or had any family member/friend associated with cancer before, complete shock and like you really have any time to absorb it. Oh well, that is all done now and I remember being a little intimidated driving to the Tom Baker Cancer Center in Calgary and knowing it will be my home for the next months, but knowing inside that it WILL NOT BE MY LAST HOME!!! I never had any real difficulties with chemo. My first month the doc.'s gave me a weekend pass to go out of the unit, and I had absolutely no immune system, hemo and platelets were borderline transfusion rate and wbc & absolute newts were non existant but yet they said, just make sure you wear a mask in public, duh!! so hear we are walking through Eau Claire Market on a busy Saturday and I am wearing a mask and it was the exact same time that Toronto had the SARS outbreak, did I get some nasty looks but my wife & I killed ourselves laughing, mean hey!! To make a long story short, I ended up feeling like I was catching a cold so we went back to the hospital.Later that nite I apparently (I have no recollection of this)went to the bathroom and came back to my bed and my wife said I had my pants down at my ankles and didn'tclean myself so she took me to the bathroom and got me in the lights and my eyes were huge she said so she paged the nurse, my temperature was 106.5 and my blood pressure was 45/27, when my fever broke, they could only get my blodd pressure as high as 50/32 so I was sent to ICU to get my B.P. up and they did , obviously, turns out I gave myself ECOLI!! yikes. On the chemo front, I only got sick from cyclophosamide, I took this drug twice and both times I would puke every 20 minutes for a minimum of twelve hours straight!!! Overall though, I am a much stronger person today and I love life sooo much now and take nothing for granted ever. I love every day and I ALWAYS make up and go to bed HAPPY!!! We have no children, just a dog, our precious little shih tzu Tobi, my constant companion these past couple of years. Is Andy working? What type of work does he/you do? My wife is a graphic desinger at the college here and I am still not working, I'm recuperating because of my lack of energy, and I am taking courses by correspondence to be a home inspector, my background is sales~ over 17 years in sales actually, so this Home Inspection stuff is all new to me and I love it, love a challenge and there i nothing in this world that I can't do, bring it on!!! Look forward to hearing from you again!! Wishing you only good days and great days.. LIVESTRONG, Darren Darren Tue, 06 Dec 2005 00:00:00 GMT I've been reading the posts between you two... I was diagnosed this July in my postpartum checkup at age 33, with a low platelets count of 5,000. I still have one round of chemo left, then I'll go on to the maint. I've talked with BMT doctors -- my sister is a perfect match -- they don't think I need BMT at the moment. Fight-all Thu, 08 Dec 2005 00:00:00 GMT Fight All: I just responded toyour email a moment ago, somewhere else... Forgive me, but when you say postpartum, what exactly do you mean...did you just have a baby? Sorry, I am lame for not understanding. How long have you been in treatment? Are you or have you been in remission? It is wonderful your sis is a perfect match. Sounds like Darren's brother. Look forward to hearing from you... BEth Beth73 Thu, 08 Dec 2005 00:00:00 GMT Darren; Hope you have been living well these last few days! I shared our emails with Andy, and he was almost moved to tears. He was like: He is my Canadian twin! See, Andy never joined any sort of support groups, message boards like this one etc. So, he was really surprised to actually know there was someone else like him..he definitly wants to chat with you. I was surprised to learn about your story of what lead you to the Dr. Here I thought I was so well educated in ALL, and I did not realize that tis disease could begin already matastisized (I wish this thingie had spell check..sorry I cant spell) Also, has there been any link between your exposure at the oil company? You totally cracked us up about the Predisone. For the sake of my marriage, I am sooo happy he is off that shit. He would literally turn into the Incredible Hulk. For such a mellow easy going guy, God he would get mean then the next he would be so sweet. And yes, the predno is the best kept beauty secret. At one point Andy, my daughter, AND our dog Muppet were all on it for the same week! I almost went running and screaming and crying out of the house. My baby had it for the croup cough, and my dog was on it for some chronic allergy...I was like..Dr. please put me on it to so we can all freak out together!! LOLOLO Anyways, that is awesome about becoming a Home Inspector. Ironically, I work for a home builder. I do the project management aspect. Pulling building permits, coordinating the architects and engineers plans and submittting them to the city etc. Its a great field. Andy is in sales. He has a company that he just started a couple of years ago. He is a distributor for ergonomic chairs...he used to work for the manufacture of the chairs. Do you and your wife snow board or ski (when you are feeling good?) Talk soon Beth Beth73 Thu, 08 Dec 2005 00:00:00 GMT Hi Beth, When I say postpartum, yes, I had a baby in May and I was diagnosed in July. The treatment started right away, in remission after the first round of chemo. I'm almost done with my chemo (Hyper-CVAD protocol), last round will start this Thursday, well, it is one week behind schedule, my oncologist is not comfortable to chemo me when my platelets are under 100K -- it takes a little longer for my counts to go up this time... Did that ever happen when Andy received his chemo? Look forward to hearing from you too:-) Fight-all Mon, 12 Dec 2005 00:00:00 GMT Angie: I thought it was overwhelming for ME to have a baby with Andy going through treatment...but what you are going through...it actually turns my stomach. How are you really doing? You have a 7 month old baby, and are going though so much. How do you do it?? I am not sure what the Hyper-CVAD protocol consists of. I am only familiar with Andy's treatment (as stated by Darren above) It sounds a lot faster than the 3 stages Andy did. That is wonderful you are in remission. Andy also reached remission about 1 month in to chemo. I do recall chemo getting delayed several times due to low blood counts, white blood counts specifically. It was just the cycle and drugs just beating him down, and with each month, it would take a little bit longer for him to recover. So there were tons of the Neupegen injections to keep boosting him. Then, his joint (hips) would ache from the white blood cell stimulation. That bothered him..then of course the torture of not being able continue w/ the chemo and fearing that he had repased, since his counts would not bounce back right away. So, that is the long version of saying YES, that did happen to him all the time. Did you feel abnormal towards the end of pregnancy? How did you get diagnosed? Has y our Dr said to you that once you are finished with this accelerated tratment..that is it (hopefully) I was confussed/concerned that a BMT was a possibility if you you are in remission. Would you Dr. do that as a proactive measure? Please do not feel obligated to answer if you dont want to. Look forward to hearing from you Beth73 Mon, 12 Dec 2005 00:00:00 GMT Beth, How are you and Andy?? Long time no talk!! I have been busy studying my Home Inspection courses, holy shit it is tough being a student again!!! How was your Christmas?? We went home (Saskatchewan) to visit both our families there. It was fun, TIRING, hectic, LONG, but overall, I love seeing my family & friends so that outweighs all of the other shit. We got home yesterday ~ we were gone for 11 days, and I am totally exhausted. Did you guys stay home or did you/are you travelling? How is Andy feeling? Good I hope, I am feeling fine and I am actually bored of being home now. I can't wait to start working, I am volunteering once a week with Canadian Blood Services ~ without this group( because of all the blood & platelet transfusions I have endured) I wouldn't be typing this to you right now!! In January I am going to be speaking to high school students about the importance of donating blood and how it saved my life with leukemia and also the need for bone marrow donors!! The lady in charge for C.B.S or the canadian blood services (I will use C.B.S because it is shorter to type and I am a lazy ass lol) wants me to be her guest speaker at the year end recognition awards for Southwestern Alberta and do some speaking at some corporate functions as well, VERY COOL!!! Who says that a person can't benefit from a little bit of Cancer lol!! I am still running on little amounts of energy, but everday I feel it getting better, baby steps. I still have some days with bone pain and I don't think that will ever subside totally, but what the hell, a little bone pain is a lot better than the alternative!! I would totally love to speak with Andy, he is my American twin for sure!! My email (personal) is red.neub@gmail.com and I forgot the other ladies name that has joined in, sorry for being rude, Hi I'm Darren and congrats on almost finishing up your treatments, just remember that for every bad day you have there will be hundreds of better ones, trust me , I have been treatment free for over 5 months now and there is light at the end of the tunnel, gotta love the cliches lol, and always always remember this, CANCER IS NOT A DEATH SENTENCE, IT IS MERELY A PIT STOP ON THIS GREAT ROAD WE CALL LIFE!!! That is actually my own saying!! If you guys want to correspond on a personal level feel free to do so!! Happy and Healthy 2006, Darren Darren Fri, 30 Dec 2005 00:00:00 GMT HOw are you? Remember me? My husband Any had the same story as you out here in San Diego... Have not been here for a long time..I cut and patstted this post so I did not have to retype everything again... here is a new twist in what we thought was a done deal.... As you may recall, Andy was diagnosed 3 years ago with ALL at age 35. He went through ALL treatment for 2 years and finished in Nov 05. Ever since his treatment was over, his white's have been slightly elevated. The Dr. wanted to wait for a few months to see if they came down..she thought it could be an accumlative effect from the prednison etc. Last week she decided to do some extensive blood work...the results came back with the marker of CML (aka the Philidelphia chromosome). He has had CML the ENTIRE time and we had no idea. God only knows how this went undetected for 3 years of biopsies blood work etc etc. The ALL was actually a secondary off shoot of the CML know as a 'blast'. So, here we go again. We are scheduling consults with Dr's at MD Anderson in Texas as well as Fred Hutchinson in Seattle. He was just put on Gleevec, so we will wait to see how that works. From my research, the only true cure is a BMT...any feedback from anyone would be greatly appreciated. We are terrified, but in war-business mode this time. Beth73 Beth73 Tue, 01 Aug 2006 00:00:00 GMT