Hi Greenie I have to make a list of things to ask the doctor prior to my visits and then I pull it out and read them off. If I need to, I put her answers down on the list and can go over it once I get home, but for the most part, I bring my son into the room and he's my ears. That works too. It's good to bring some one with you and they also can remind you of anything you didn't ask, or forgot about. I hope that has helped you a little. Take care. Millie ----- Original Message ----- From: Myvety2k via CMLHope <[email protected]> To: [email protected] Sent: Mon, 19 May 2014 13:03:22 -0400 (EDT) Subject: Re: [CMLHope] Re: let's all write about when we were first dx with leukemia
Hi Susan, I was reading you post about how long you have been off all Meds. I've been on Gleevec for 14 1/2 years none stop. I wanted to ask Dr. Altman what it would feel like to be off Gleevec just to see if any of the problems I have are due to Gleevec or the aging process. I forgot to ask her. Every time I get around a white coat I fall apart and my blood pressure goes up. The worse sign are the dizziness, or is it allergies, pollen in the air here in SWFlorida. I think it's the air, pollen, etc. hope I'm right. I know for sure I can't stay out in the sun or heat to long, winter time here is no problem. make in touch, greenie In a message dated 5/19/2014 10:10:52 A.M. Eastern Daylight Time, [email protected] writes: Hi Joyce, Thanks for posting all about your husband. So thankful you got to Dr. Talpaz. I had a choice between either him or Jessica Altman at Northwestern in Chicago. I chose the closer one, Dr. Altman, and am very happy with her. Will be going this Wednesday. I have started on bosutinib, the lowest dose, after being off all medications basically for seven years. Thank God I am still in cellular remission. At any rate, I am thrilled with your husband's results with the lowest dose. I was on gleevec for 2 yrs, 3 mos, and had a brain bleed, then another. Immediately tried sprycel which gave me a big eye bleed with half a dose, indicating bleeding problems again. Tried all the other drugs, still getting signs of stroke. So hoping this one works. We all are walking miracles, and I thank God every day for all the time I had off medication. This was against my doc's advice, but I didn't want to die of a stroke! Now trying it again.....keep fingers crossed. Welcome to our group, hope it helps! We all are quite close, and I also am thankful for my blood brothers and sisters! 18's, (see Marty's posts) Susan -----Original Message----- From: Myvety2k via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Sat, May 17, 2014 4:57 pm Subject: Re: [CMLHope] Re: let's all write about when we were first dx with leukemia Joyce, you have come to the right web-site. The people in this group will give you all the information you will ever need. I know we have a few that know as much or more then the Doctors. So, if their's anything you need just ask away. You will get a fast reply. Greenie Fort Myers, FL. In a message dated 5/17/2014 4:12:12 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: It is so interesting hearing other CML patients' first experiences with the disease. My husband is the one who has CML, but he does not do internet. Anyway, being married 55 years, what happens to one of us happens to both of us. So I feel I am just as involved with this disease as he is. Wayne had not been feeling up to par for about a year and a half. Had been to see his doctor who saw him on a regular basis to treat his Type 2 diabetes and harp on his cholesterol. He told him at 3 different appointments that he was not feeling well, had no energy, and weirdest of all----he was constantly HOT. We had to set the thermostat at 65 in the winter and he sat with a fan on him and as little clothes as possible. After freezing and shivering a whole winter and then trying to keep him comfortable in the summer, we changed doctors. Our new doctor listened closely to his symptoms and thinking his lack of energy and inability to walk very far without being winded may be a heart problem, she sent him to a cardiologist. When we saw him and explained the symptoms, he ordered the simplest of tests: a CBC. He also did an ekg and examined his heart, blood pressure, etc. He told us to go to the hospital on our way home to have the test done. We did this. We live about an hour from the hospital. Before we got home (we stopped to have lunch) the cardio called us on our cell phone and said his white cell count was way out of whack and we should go immediately back to the hospital's ER. He had a doctor waiting there to see him. We were told by the oncologist waiting for Wayne that his WBC was 241,000 and he likely had CML. That was the bad news, but the doc said it was the best kind of leukemia to have because they had a drug that could treat it. This was on May 8, 2009. The doc had time to do a BMA right away. He started him on hydrea and another drug (can't remember now). He took this for about a month and then was started on Gleevec. After taking Gleevec for a few weeks he started feeling very bad. His mouth was tingling and his tongue felt numb. He was not able to eat properly and lost 35 pounds in a month. He told the onc that he thought he was allergic to the drug. Doc said there are no side effects from this drug. Can you imagine that?? He continued to go downhill and had by this time blisters, itches and sores all over his body. The onc said go see a dermatologist. You guessed it....the dermatologist said it looks like a reaction to a drug. At this point we left the first onc. I had by this time found this and another CML site and was made aware of the need to see a CML specialist. He was fortunate to be able to go to Dr. Talpaz in Ann Arbor at the U of Michigan. He saved his life. Dr. Talpaz said he was indeed allergic to Gleevec and that his insides were as affected as his skin. By this time he had horrible lesions in his mouth. Dr. Talpaz had him off of Gleevec for a month and then started him on 50mg Sprycel. Even at that small dosage his PRC was undetectable within a year. He has been very lucky with not having many side effects from Sprycel. He has some colon problems....constipated one day and diarhhea the next. He does not have much energy but feels generally well. We feel that our trips to Michigan twice a year to see Dr Talpaz are well worth the time and cost, even though it means a flight from Southern IL to Michigan and an overnight stay in a hotel. Thank you for listening to our story. I look forward to reading more of our members experiences. Joyce in IL On May 17, 2014, at 12:26 PM, C.M. Houtz wrote: Greenie, this happens a lot because Doctors don't follow up on things. I had a wonderful doctor at the time because I was already dealing with breast cancer, and he was there for me, running tests, etc. My sister-in-law in Minnesota went to a regular surgeon and had one breast removed and had no follow up. She didn't know that she needed one at the time. That guy should have been strung up. At any rate, two years later, she had to have the other one removed, and I gave her hell because I felt she should get the best Oncologist she could fine. They live about 20 miles from Duluth, Minn. and there are lots of very good doctors there. At any rate, the second breast was removed and this doctor had her come in regularly and ran the proper blood tests, etc. I felt much better. Well, after one of the tests, she found a tiny bit of cancer on her liver (not enough to be concerned about)..Isn't that a hoot? At any rate, she never followed up on that (the doctor) and Linda developed liver cancer, which went to her brain and killed her within a year. Why aren't we more important? I do believe that half of the doctors are in it for the money, and you're secondary. There are lots of good ones too, and I'm so lucky to have one in my life as he's kept me alive for over 20 years now. That's something when you consider all of my health issues. Just wanted you to know what others go through and what happens to them. This is just one story, as I've heard many. The sad part is that now her daughter is recovering from having both breasts removed, plus reconstruction. The good thing is that she didn't have any in her lymph nodes. so is a very lucky woman. She's in her 40's and I pray that this is her last dealings with Cancer, but pray that she keeps seeing a good Oncologist. You take care. You've come a long way. Hugs, Millie ----- Original Message ----- From: _Myvety2k via CMLHope_ (mailto:[email protected]) To: [email protected]_ (mailto:[email protected]) Sent: Saturday, May 17, 2014 1:12 PM Subject: Re: [CMLHope] Re: let's all write about when we were first dx with leukemia Hi group. Back in June of 1997 went to my Doctor to get my year end blood work. Test results came back 10.9 WBC, the norm was 4.8 to 10.8. I should have known better. Next year December 21, 1998 I came in to get my results and now my WBC is 87600 and my platelets 498. Wow, when it was 10.9 why didn't he recheck a month later. No answer. He sent me to a cancer Doctor in Munster, IN. and they did the blood work plus you get the results in 10 min. of course she did a BMB right their in the office. You have CML, WOW what a shock that was, I had no idea their was a problem, I felt just find. So then she sent me to Northwestern to see Dr. Tallman who was the head man their and he placed me in a study with Interferon for 3 months, that was the kiss of death. Almost died from that, lost 50 lbs. in 2 months, wanted to dye. And my white counts didn't even move. So I was put in Hydrea and 2 months later he called me and told me to come their on a Monday for a new study with 7 other people from Chicagoland to try something new. The drug STI571 later to be Gleevec. Their were 200 people in this study in the USA. No problem what time do you want me their, I was their 1 hour early. Drove from Hobart, IN. in 45 min. So the rest is history. Bottom line is that when the Doctor told me you could have knocked me over with a feather. You always have to keep checking, no one knows you better then yourself. greenie In a message dated 5/17/2014 10:51:51 A.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: I was having severe pain in my left side (didn't know it was my spleen). Went to a doc who did a cbc. I also was extremely tired, and before the results came back I began severe diarrhea, so was extremely high in white count and low in red, of course. They called me on VALENTINE'S DAY 2005 to say get to the E.R., my primary had been notified and they were going to admit me, cuz I had leukemia, they were sure of it. Sure did ruin my Valentine's Day!!! After sitting in the E.R. for 3 hours they said, "You are getting exposed to all these germs, not good, go home and wait for us to call you when we have a room." So I did, call came two hours later. Then after being in hospital for a day, hospital doc comes in and gruffly says, "You have acute leukemia, will put you in isolation for 30 days with high chemo, let you rest at home for 30 days, and then come back again for more. You will likely die within a year." I'm trying to wrap my mind around all of it. Was not scared, felt like he was talking about someone else. The next day same doc comes in, says, "You have CML, you can go home today!!" No apology, no nothing. They made a mistake, but why did they care? They didn't! I sure was grateful for the proper diagnosis. 18's, Susan "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -----Original Message----- From: Richard H <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) > Cc: ICANDOALLTTC <[email protected]_ (mailto:[email protected]) > Sent: Sat, May 17, 2014 12:19 am Subject: [CMLHope] Re: let's all write about when we were first dx with leukemia I went to mt PC Dr. to invistigate uncontrolable itching. He refered me to an allergist. The allergist gave me some ceam to releive my intching and pain. He had my blood tested and showed a WBC of about 30,000. He called my in about 2 days and ask me to come see him at his office. He asked me to go to my PC's office as he was certain I had some sort of leukemia. At my PC's office he recommended that I see an ONC asap. They made the call and had me in that office in less than a week. I had my BMB in less than 3 weeks, and four weeks later I started Gleevec. The rest is my CML journey. Richard H. On Wednesday, May 14, 2014 2:50:46 PM UTC-5, [email protected]_ (mailto:[email protected]) wrote: Hi Millie, did the onc find it through a blood test and how did they treat it in the beginning? Did you have a BMA? Were your blood counts really high? Just wondering. Blessings Jeanie<3 In a message dated 5/13/2014 8:08:45 P.M. Eastern Daylight Time,[email protected] writes: I was alone when I got the news about my leukemia. My husband never has gone with me. Oh, he drove me there a few times, but never went in and met my doctor or anything. It was difficult for me to do this all by myself, but I did it. I was there for my 5 year check up for breast cancer. Thank God I had an Oncologist, so it was just a matter of dealing with the news. I already had this doctor for 5 years, so it did make it a lot easier. Chris goes with me when he can, and I appreciate that a lot. I can't always hear that well, and he is my ears when we go. It's also nice having someone with you. I will write again soon, Jeanie. I'm going to go sit in my recliner and stitch for a while. Lots of hugs and prayers, Millie ----- Original Message ----- From: ICANDOALLTTC via CMLHope To: [email protected] Sent: Tuesday, May 13, 2014 6:56 PM Subject: Re: [CMLHope] Fwd: Fwd: Fw: Love Story With a Dog That's a great story, Marty. I don't have dogs, but my daughter who lives alone with her children bought a German shepherd as a puppy. He is very protective, and I don't think anyone would want to mess with her family. When I was visiting her last year, I had a choking spell which I get sometimes if water hits the wrong spot in my throat. I couldn't catch my breath, and all of sudden the dog jumped up and bopped me on the chin. It was his way of trying to help me. It was so cute. Thanks for sharing your story on the discovery of your leukemia. Here's mine: I had flown to Ohio to be with my daughter, and I was sick while there. I thought I had eaten something bad. I got home, and was taking my usual daily walk, and I got so tired I could barely stand up. I came in and told my son how tired I was. He told me I had to go to the doctor. I said no, because I never liked going to doctors and only went in cases of emergency, however he insisted and off I went the next day. When I was waiting in the waiting room, my heart was pounding very hard and fast. The doctor who was my PCD took all my vitals and said he was going to take a blood test. I told him I really didn't need one but he insisted. Luckily he has a blood draw right in his office, so they took the blood and told me the results would be back the next day. The next day he called with the bad news. He told me my platelets and wbc were way too high to be normal and that he was making me an appointment with an onc he knew. I told him I didn't think it was serious but he had already made the appointment. So off I go to a new doctor I had never seen before. He also had a blood draw center in his office and the first thing he did was have my blood tested. It seems my platelets were in the millions and wbc way high. He wanted to do a BMA right then and there, and me not knowing anything about them, agreed. He decided right then and there that I had leukemia. I went into the office without my son, but he was waiting for me. The onc told me I sure was brave to be coming there alone. I must have been in shock because I still didn't realize what her was telling me. Then he told me I had to go right to the hospital. Now I knew things were getting serious. He said he had bad news and good news. The bad news was I had leukemia and the good news was that we now had Gleevec to treat it with. I was put in the hospital and was having my blood cleanse daily. It wasn't doing any good but they were doing it anyway. Finally I was sent home and I started on Gleevec. I was also on Hydrea and another drug, still my counts wouldn't come down. It took a while but finally they started coming down. The whole episode was a nightmare when I reflect back on it. More later-- Jeanie<3 In a message dated 5/8/2014 8:45:52 P.M. Eastern Daylight Time,[email protected] writes: Hi Millie and everyone else, Just so you know I had all of my tests this morning and am now resting at home. It really took a lot out of me but I am still doing as well as can be. My heart is still doing what it is supposed to and although they removed ten polyps from my colon the doctor will be sending them off for pathology but said that she thinks everything looked good. Hopefully she will be right. Millie I read about the dog Lucky and it brought back memories to me. I had an adorabile dog named Sniffer. She had the face of a baby raccoon, and would follow me where ever I went. She was like velcros sticking to my leg whenever I would walk her. She and I were extreamly attatched. I had adopted her from some obusive people when she was only nine months old. As soon as I opened my car door she ran in as fast as a lightening strike. She was mine and I was hers for the next fifteen years. When I had to get my bone marrow transplant I was gone for over seven months and she would cry most of the time. She knew something was wrong but didn't know where I had gone. So, after all of these month of being away from my home, when I finally got back home she was not allowed to stay near me because I had a very low immune system. I even had to have my own bath facilities and a whole bunch of other things that would not be able to infect me. This had gone on for several more months and when I was finally able to have my immune system working again, I still had to ware a mask and gloves. So I slowly went over to her and spoke in a very gentile voice. She at first was afraid to come over to me, and would run and hide under the bed. I then came to find out that since I had the bone marrow transplant my scent had changed and since I had the mask on she didn't recognise me. it took another couple of weeks for her recognise me and once she did then she was velcrose again. After she died, my heart was broken, and I looked for another dog for almost two years. Shelly and I would visit shelters every weekend and nothing... Funny how things work out. A friend of mine by the name of Jay (he is in my book) he had cancer and I would always spend time with him when his wife was at work. Well one day there is a stray german sheppard sitting across from his house. She was filthy and smelled from gasoline. She had a bad cut on the back of her rear leg with dried blood on it. Everytime I tried to approach her she would show her teeth to me and growl. She was about twenty five feet from me so I got down on my knees, clasped my hands into a cup like shape and gently started speaking to her. It took about fifteen minutes before she would come to me, and when she did she just put her snoot right into my hands. I mean this dog could have really hurt me if she wanted to but she was very gentle with me. I took her right to my vet who had to put a muzzle on her and he cleaned and dressed her wound then had her cleaned up. He also warned me that since I had small children it wouldn't be a good idea to bring her home with me. It seemed that she immeadiately bonded with me because as soon as the vet removed the muzzle from her she came right over to me and started to gently howl to me. He was simply amaized at what he saw. So, I know that animals have this sort of sense of who we are. I brought her home with me and introduced both of my young children and wife to her. We had her for 12 years and she was very protective of my wife and children. If anyone ever would try to harm any of us then she would have given her life to protect us and as it happened she did protect our home. The burglar almost lost his legs after she attacked him. If we were home at the time she would have probably killed him. So, what does this all have to do with Leukemia? Well, my first dog Sniffer would always come over to me and would smell me at my right hip. I was kind of taken back by her behavior because I didn't know what to make of it??? I later found out and then associated it. Several weeks later my right hip started to swell up and it was really hurting me very much. It got so bad that I went to a doctor who failed to take a simple CBC blood test but rather gave me pain killers and an anti inflamatory. Had he taken the blood test it would have come back with a huge white blood cell count. I went home but the pain got much worse and my hip was now twice the size it should have been. My wife Shelly was in our home in Pennsylvania because I had to work and she was off for the summer, and I would come up on the weekends. At about three am I felt as if I were dying so I called my friend to take me to the hospital. I didn't want to call 911 because we lived in a duplex and I wasn't able to climb down the stairs to be able to open the door so they would have probably have to break it down, while my friend had the keys. And that is how my Leukemia started. Now if I had only known what my dog Sniffer was doing by smelling my right hip? Animals, especially dogs have this uncanny sense that we just can't understand because we speak "different languages" I guess that in her own way she was telling me that something was wrong, it was I that just didn't understand what she was trying to tell me. 18's, Marty On Wed, May 7, 2014 at 10:47 PM, houtz <[email protected]> wrote: > Thought this was worth sharing. When I first got Cancer my little dachshund wouldn't leave my side, and when I was in the hospital, she'd cry her heart out when I came home. I believe that they sense things better then people do...Love to all, Millie > > > > > > This really is a great story! > [image: cid:39699F9DDE2E4740963F588FF14D329A@FranPC] > *Lucky Dog.... * > > Anyone who has pets will really like this. You'll like it even if you > don't and you may even decide you need one! > Mary and her husband Jim had a dog named 'Lucky.' Lucky was a real > character. > Whenever Mary and Jim had company come for a weekend visit they would warn > their friends to not leave their luggage open because Lucky would help > himself to whatever struck his fancy. Inevitably, someone would forget > and something would come up missing. > > > > > > [image: cid:7F5E61FCF1C74CE1A4018C72CE4D93FB@FranPC][image: > cid:DC0BD295928B4651B7D480B00FC2F881@FranPC] > Mary or Jim would go to Lucky's toy box in the basement and there the > treasure would be, amid all of Lucky's other favorite toys. Lucky > always stashed his finds in his toy box and he was very particular that his > toys stay in the box. > It happened that Mary found out she had breast cancer. Something told > her she was going to die of this disease......in fact; she was just sure > it was fatal. > She scheduled the double mastectomy, fear riding her shoulders. The > night before she was to go to the hospital she cuddled with Lucky. A > thought struck her....what would happen to Lucky? Although the > three-year-old dog liked Jim, he was Mary's dog through and through. > If I die, Lucky will be abandoned, Mary thought. He won't understand that > I didn't want to leave him! The thought made her sadder than thinking of > her own death. > > The double mastectomy was harder on Mary than her doctors had anticipated > and Mary was hospitalized for over two weeks. Jim took Lucky for his > evening walk faithfully, but the little dog just drooped, whining and > miserable. > Finally the day came for Mary to leave the hospital. When she arrived > home, Mary was so exhausted she couldn't even make it up the steps to her > bedroom. Jim made his wife comfortable on the couch and left her to nap. > Lucky stood watching Mary but he didn't come to her when she called.. It > made Mary sad but sleep soon overcame her and she dozed. > > When Mary woke for a second she couldn't understand what was wrong. She > couldn't move her head and her body felt heavy and hot. But panic soon > gave way to laughter when Mary realized the problem. She was covered, > literally blanketed, with every treasure Lucky owned! > While she had slept, the sorrowing dog had made trip after trip to the > basement bringing his beloved mistress all his favorite things in life. > *He had covered her with his love.* > Mary forgot about dying. Instead she and Lucky began living again, > walking further and further together every day. It's been 12 years now > and Mary is still cancer-free. Lucky. He still steals treasures and > stashes them in his toy box but Mary remains his greatest treasure. > > > > [image: cid:C705D58F084C427A8B925699F537DC71@FranPC] > Remember.....live every day to the fullest. Each minute is a blessing from > God. And never forget....the people who make a difference in our lives are > not the ones with the most credentials, the most money, or the most > awards. They are the ones that care for us. > > If you see someone without a smile today give them one of yours! Live > simply. Love seriously. Care deeply. Speak kindly. Leave the rest to > God. > *A small request* > > All you are asked to do is keep this circulating. > *Dear God, I pray for the cure of cancer.* > *Amen* > > All you are asked to do is keep this circulating, even if it is only to one > more person, in memory of anyone you know that has been struck down by > cancer or is still fighting their battle. > > [image: cid:7C648867D9824FC6BBF2FD936F5E39BB@FranPC] > > > > > > > > <http://www.avast.com/> > This email is free from viruses and malware because avast! > Antivirus<_http://www.avast.http_ (http://www.avast.com/) >protection is active. > > -- > -- > [CMLHope] > A support group of _http://cmlhope.com_ (http://cmlhope.com/) > ------------------------------ > > You received this message because you are subscribed to the Google Groups "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to CMLHope-u...@CMLHope-u...@<WB > For more options, visit this group at _http://groups.google.com/http://groups_ (http://groups.google.com/group/CMLHope) > --- > You received this message because you are subscribed to the Google Groups "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+u...@cmlhope+u...@<WB. > For more options, visit _https://groups.google.com/d/https:_ (https://groups.google.com/d/optout) . -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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