Re: [CMLHope] My story, Part I
Thank you Maria for sharing your story. WOW. You have been through so much and have come through the other side...sounds like you are doing great! And we are so happy for you and glad that you are here on line sharing your story with all of us. Lots of special folks here that's for sure. Take good care, Beth in Chicago. -Original Message- From: mariacashion To: cmlhope Sent: Tue, Jul 15, 2014 6:16 pm Subject: [CMLHope] My story, Part I Well guys, here is how it all started, and how I was diagnosed. I am an anthropologist (physical anthropologist and archeologist), a wife and a mother. Of course, I am used to working hard, almost like a slave (all mom’s are J). I guess about 7 years ago, I started feeling a little more tired than usual...I mean, field work is hard, working from 7:30 AM until 3:00 PM at construction sites doing archaeological monitoring, pickup my daughter at 4:00 PM or so and spending the rest of the day with her, cooking, waiting for my husband to come home from work. Putting the kid to sleep at night. Then, I would have to write my reports and if lucky, slept a couple of hours to start a new day… Mom can’t get sick…I started to feel more tired than usual, heavy night sweats, pain in the back, left side just above the waist…Doctors said it was nothing, probably my imagination…It got to the point that I would come home exhausted. I couldn’t even do house work. I would move the furniture to sweep and mop, then I had to sit for half an hour in order to be able to put everything back in place, Once I had my white blood count high and my doctor told me that that only meant that I had an infection… On December 18th 2011 I had to go to the ER of my nearest hospital. After examination and testing, xrays, ct, etc, they even considered sending me home until the CBC arrived. I was hospitalized just when the x-mass season was getting good and my 14 year old was on vacation from school. WE had so many plans that were never accomplished Knowing that my daughter was suffering my absence was the main factor that gave strength specially because not even my family came through. We were and still are just 3, my husband, my daughter and I… I was then transferred from the hospital I was in to a government operated hospital area known here in Puerto Rico as CENTRO MEDICO. The HOSPITAL UNIVERSITARIO DE ADULTOS has a specialized unit for leukemia patients. THEY SAVED MY LIFE. I had my first bone marrow aspiration and biopsy done at the first hospital. Results were in soon, 2 days or so and results were given to my husband to take over to the new hospital. Results were horrible, although at that time I didn’t pay much attention to them. Thank GOD I did not!!! I would have given up then and there. Final Diagnosis: Comprehensive Assessment: BLAST PHASE OF CHRONIC MYELOGENOUS LEUKEMIA WITH T(9,22) AND DELETION OF 9Q. The patients peripheral blood smear shows markedly increased blasts. The bone marrow core biopsy also reveals a large population of blasts; including 80% of the maroow spaces. The blasts are small to intermediate in size with high N:C ratio, immature chromatin and a small amount of cytoplasm with occasional cytoplasmic granules… the blasts are positive for MPO,CD66, LYSOZYME with no significant expression of CD34 AND CD117… PRONOSTICATING RESISTANCE TO TYROSINE INASE INHIBITORS AND UNFAVOURABLE PROGNOSIS… -- -- [CMLHope] A support group of 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at 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+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at 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+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] Bone Pain
Hi Marty: My onc/hematolgist is friendly with Dr. Talpaz. He said he needs to see at least a year of undetected before even considering lowering the dose or taking a trial vacation. I have a ton of arthritis and the Gleevec, in my opinion, has exacerbated it so that adds into the pain. I do try your outlook - look on the sunny side and be grateful for all of the good things. It gets me through and I do work so I just try to put the pain in a box and hide the box for as long as possible. How are you doing? Do you have any idea of when a transplant may happen? I think about you a lot and send lots of prayers your way. I know Shelly is right by your side, as she has been these many years. You always lift all of us up and we appreciate it more than words can say. 18's back at you. Marcie -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, Jul 16, 2014 10:30 pm Subject: Re: [CMLHope] Bone Pain Hi Marcie, First you shouldn't have to be suffering this bone pain. What is probably happening is a reaction to the TKI that your on. Now that you are PCRU for the second time in a row, maybe you might consider getting in touch with some of the worlds renown CML specialists like Dr. Brian Druker or Moshie Talpaz and ask for their advice of taking less or maybe even stopping your TKI. I think they would be the ones to ask, and Marcie it never hurts to ask you just might be pleasantly surprised to be able to rid yourself of the bone pain. I know a lot of people that through their doctors advice have gone off of their TKI, but as I said you really need to talk to these CML specialists. 18's, Marty On Wed, Jul 16, 2014 at 9:12 PM, 'Marcie Goodman' via CMLHope wrote: > Thanks, Jeanie. I'll try the castor oil and let you know. The baths help > but I work full time and a lot of the pain is going on during that time so > obviously I can't take a bath til evening. I just got my 3 month bone marrow > results and hit undetected, same as the prior one in March. A first for me - > two undetecteds in a row. If I have to suffer bone pain to have the cancer > cells gone, I'll stop complaining and take it! > > Hope all is well with you. I remember that you had a nice, long vacation. > Please let us know how you are doing. > > Hugs, > > Marcie > > Sent from my iPhone > > On Jul 13, 2014, at 8:22 AM, ICANDOALLTTC via CMLHope > wrote: > > Hi Marcie, My dau did acupuncture for migraines with no relief whatever. > Have to tried hot epsom salt soaks? Try massaging with castor oil; I > massage every night; get the organic kind at your health store or order it > online. > I remember my first onc telling me he had a patient on Gleevec with severe > bone pain, but I never had it. > Gleevec never worked very well for me either, so maybe the bone pain lets > you know it's working. > Hang in there. > Blessings, > Jeanie<3 > > In a message dated 7/10/2014 4:15:52 P.M. Eastern Daylight Time, > cmlhope@googlegroups.com writes: > > Has anyone tried acupuncture to relieve bone pain? 5+ years on Gleevec is > really taking a toll on me and nothing, not even the hard core pain killers, > help. I've discussed with my onc and internist and they said try the > acupuncture but they don't think it is going to help. > > Marcie > > -- > -- > [CMLHope] > A support group of 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at 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+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at 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+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send ema
Re: [CMLHope] My story, Part I
Maria, Thank you for the clarification on consolidations. I guess you will have to continue to tell the various docs that you are NOT in blast and please review the records more closely. I understand the "running away" feeling. But that never works, does it? My husband in on a 50mg dose once a day. I understand the hating of BMAs. The last two my hubby had were done by a CML specialist in Ann Arbor, MI, at the Cancer Center at the University of Michigan. He goes to see this specialist twice a year, which means a flight from IL to MI, a night's stay in a hotel and a few needed expenses like food. But the hemotologist/oncologist he was seeing locally nearly killed him. So we feel the cost is justified. I digressed from my subject of BMAs. The last two were much more comfortable than the ones done locally at a general leukemia doc in St Louis. He does so many of these that he is really accomplished at doing it the least painfully. How are you feeling now? Are you able to work normally at your job? Joyce in IL On Jul 16, 2014, at 10:01 PM, Maria Cashion wrote: > Dear Joyce: > Consolidadtions are other chemotherapy treatments. I had 3 after the > induction for a total of 4. For all 4 I had to stay put in the hospital for > a month. As I mentioned, they first treated my CML as if it was AML. It was > really ruff. The othet thing is that I am at a University Hospital (which in > a way wxplains why so many doctors). Here in Puerto Rico this is the only > hospital that really treats leaukemia patients...they are a specialized unit. > but sometimes I feel like running away > > The problem that I have is that my doctors keep making reference to my blast > crisis and still handle my case as if I was in the middle of one!!! ONly one > of them, who graduated last year told me that I no ,longer have a problem > with the blast crisis, that they took me out of it and that it is gone!!! > Everybody else still clasiffies me as CML/AML which is really not the case. > > Now, about Sprycel. is your husband on a once a day or twice a day dose? > > I hate bone marrow aspirations :( > > Maria :) > > > On Wed, Jul 16, 2014 at 10:47 PM, Joyce Mesnarich wrote: > Maria, > You are truly a miracle! So happy you had success with Sprycel. But these > meds are very powerful and do cause serious side effects. It is a shame that > our doctors do not always listen to our concerns. The fact that you had to > see different doctors during this critical time is unfortunatebut you > made it through. > I am going to ask a question which may seem stupid, but I don't know what you > mean by the term "consolidations". Can you explain that? > You are questioning the advisability of continuing Sprycel at 70 mg. I would > think that as long as you have periodic bone marrow aspirations to be sure > you are not back-sliding, and Sprycel at that dose is not negatively > affecting you, I would be inclined to stay with it until and if your bad side > effects return. My husband was allergic to Gleevec and put on Sprycel at 50 > mg. In 4 months he was PCRU (undetectable). He has had some issure, but > nothing so far that is serious. I think all of those on these TKIs are a > little on edge wondering what the long term effect of them might be since > they have only been in use since 2000. > I hope you continue to do well. God bless and keep you. >Joyce in IL > > > On Jul 16, 2014, at 7:38 PM, Maria Cashion wrote: > >> Hi! My blast crisis was terminal and was behaving as AML. I had high dose >> chemo and Sprycel. After induction and much praying, my 70-80% blasts went >> down to zero and have remained as such until now. This happened in 1 month. >> I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was >> lowered to 100mg. Right now I remain in complete molecular remission. My >> doctors consider me a miracle, for I am the first person in blast crisis >> that they have been able to save. I believe that they learned from what >> happened with me and have saved others. :) >> >> Last January I had a severe reaction to Sprycel. Everything that could go >> wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid >> went crazy...I stopped Sprycel for a month and my doctor told me that we had >> to change medications. Had an additional bone marrow aspiration and biopsy, >> resulting in complete molecular remission. >> >> What is important to note is that Sprycel had been causing problems little >> by little. I told my doctors about it, but they did nothing until all went >> crazy. The main problem that I see is that they treat patiensts as if they >> were all stupid and wont really listen to you. >> >> Well, back to the story...After being off Sprycel for a month, everything >> went back to normal and I lost 37 pounds of water in that short time...Came >> to the clinic for my next appointment, another doctor
Re: [CMLHope] My story, Part I
Maria, as far as your doctors "grey matter" well it is you that should be controling that. Think about something, without you and others in the same position as you they wouldn't be in practice. I found out something a long time ago. You have to be sick in order to find the right doctors that will really care for you. If they don't or can't then it is very simple, get one that does. It may be frustrating but it has always worked for me. I would like for you to see a very touching video. It is about people that look to help other people. https://www.youtube.com/embed/uaWA2GbcnJU> 18's, Marty On Wed, Jul 16, 2014 at 10:35 PM, Maria Cashion wrote: > Thanks, Marty. It really helps a lot to have feedback from people who know > what this is all about. You are also a warrior and your story also proves > it!!! Never loose hope. I am praying for my doctors grey matter to > multiply on time for my next appointment!!! :) > > Just thought you would laugh at that > > Maria > > > On Wed, Jul 16, 2014 at 10:15 PM, Marty Gartenberg wrote: >> >> Hi Maria, >> >> It sounds like you had an array of very non caring doctors and very >> ignorant of exactly what medications are out there now, but you >> survived through them. I always say that you are your own best >> advocate because you know your body better then everyone else. >> >> Sometimes, which was in your case, these doctors don't listen to what >> you have to say. Remember me telling you that your a very strong >> willed person, well doesn't this prove it? >> >> I also told you that you were a miracle because of the very short time >> it took you to go from a hefty blast into MMR. Things just are >> happening right for you. I believe in GOD and HE is smiling down on >> you. >> >> Maria, when I had CML I too was in blast with a white blood count in >> excess of 486,000. At the time there were none of these TKI drugs but >> only Alpha Interferon that was only on a blind study, and I was given >> the opportunity of maybe or maybe not being on it. I knew that if I >> chose it that I could possibly be put onto a placebo so the only other >> option that I had was a bone marrow transplant. Since it was found >> that my sister was a perfect HLA match I decided to try that. At the >> time a perfect HLA match was considered to be a six out of six Antigen >> match while today I believe it is 10 out of ten. >> >> I have to honestly say that I really suffered through the transplant >> and way afterward. I had to live in a plastic bubble in the hospital >> for seven months. Having total body irradiation and huge doses of >> chemotherapy. That was more then 24 years ago and I am still here to >> write about it. >> >> However, now I have some more health problems. My kidneys have both >> failed and I am on dialysis for three times a week for more then 4 >> hours each session. But I still am living just waiting for a kidney >> transplant, hopefully it will come soon. >> >> So that's about my story and as I mentioned we all have our own >> stories, but when one tells of his or her plight it just seems to help >> the others on here. >> So, Maria you just keep posting anything that you want to and I >> guarantee that you will hear from someone on here with some valued >> advice because they have or already going through it. This is what is >> so good about this site because as you can see we all care deeply >> about each other. >> >> 18's, >> >> Marty >> >> >> >> On Wed, Jul 16, 2014 at 8:38 PM, Maria Cashion >> wrote: >> > Hi! My blast crisis was terminal and was behaving as AML. I had high >> > dose >> > chemo and Sprycel. After induction and much praying, my 70-80% blasts >> > went >> > down to zero and have remained as such until now. This happened in 1 >> > month. >> > I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was >> > lowered to 100mg. Right now I remain in complete molecular remission. >> > My >> > doctors consider me a miracle, for I am the first person in blast crisis >> > that they have been able to save. I believe that they learned from what >> > happened with me and have saved others. :) >> > >> > Last January I had a severe reaction to Sprycel. Everything that could >> > go >> > wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid >> > went crazy...I stopped Sprycel for a month and my doctor told me that we >> > had >> > to change medications. Had an additional bone marrow aspiration and >> > biopsy, >> > resulting in complete molecular remission. >> > >> > What is important to note is that Sprycel had been causing problems >> > little >> > by little. I told my doctors about it, but they did nothing until all >> > went >> > crazy. The main problem that I see is that they treat patiensts as if >> > they >> > were all stupid and wont really listen to you. >> > >> > Well, back to the story...After being off Sprycel for a month, >> > everything >> > went back to normal and I lost 37 pounds of water in that sho
