Hi Norm, I am glad to see that you are doing well. I have been having trouble with my heart too and the doctor thought it might be from the Gleevec, but I too have a history of heart issues in my family, and told the doctor I want to go with that. The god news, I have not had any heart attacks or surgeries on my heart and I hope to keep it that way. I have been on Gleevec for 18 years and have had every side effect there is from it more time than I can count. I really enjoy the eye bleeds. Those are the best when I go out to the store and people stare at me and wonder who punched me in the eye? At least it doesn't hurt, it is just unsightly.
I'm glad to hear that you got to walk you daughter down the isle and I'm sure she was thrilled to have you there on her special day. I beat my husband to retirement too. I've been retired for 15 years, and in the beginning I didn't know what to do with myself. Then my husband said he was going to retire 5 years after I was retired and he was home about a week before I wanted to go back to work. š All in all life is good as you said and I am glad to see each day. Like you, I am trying to understand why each day there is a new pain but I refuse to let the pain stop me. I just keep going and never give in to the pain. Until the end of the day when I put my feet up. I don't have cat like reflexes, I am more like a pinball game. I tend to get stuck in the doorway and bounce around or bounce off the wall into the other wall. I find it easier to get around the house that way. So now I am going to play water volleyball and have a good time. Hope you have a great day and keep those cat like reflexes working. Sherri On Tue, Sep 17, 2019 at 7:50 AM N Quade <[email protected]> wrote: > I am still here and hanging in. > > No longer on Tasigna and now on Sprycel. > > The Monday after Thanksgiving I had a quadruple bypass and my doctor said > that the Tasigna could be a contributing factor in my heart issues. I have > a history of heart disease in my family so I take that with a grain of > salt. Well, no salt anymore. > > I was home for about five days and had to get 911 to send an ambulance > because I was passing blood and almost pulled an Elvis in the bathroom. > > Had to get 7 units of blood and three bleeding ulcers ffixed. Seems taking > Aleve for joint pain over a long period will eat hole in your stomach. > > The best news is I was able to walk my daughter down the aisle for her > wedding this past March. > > > > My wet macular degeneration is mostly stable but did have issues with both > eyes and am getting shots in them. No more leaks as of now but have to > āseeā the retina doctor about every 8 weeks now. > > > > I set my retirement date and am looking forward to the end of the year and > starting the next chapter in my life. > > My spouse had her job outsourced to India so she beat me to retirement. > > > > We still have our rescue wiener dog and he is a hoot. I do think he is a > bit confused with my wife not working and is missing out on his normal 22 > hours of sleep. > > > > I just got my latest numbers from my last visit to MD Anderson and have > not looked yet. They had me on the smallest Sprycel dose and my number > started rising so he upped it to 50mg and I go in every three months now. I > am going on 17 years as a survivor and 15 years since I was declared in > blast . > > > > All in all, life is good. I have determined that aging is not for sissies. > I am still struggling to understand why when I wake up and something hurts > for no reason. Why is it that it takes a bit for my legs to understand > their function when I stand up and tell them to walk. I do have some ideas > about being safer such as wearing a helmet so I donāt bust my head if I > were to fall. Now if I could just figure out how to make a functioning roll > cage to keep me from hurting myself should my legs fail to respond in a > timely manner. I am not sure how long my cat like reflexes will keep me > from harms way. > > > > I will check in more often. > > > > Norm > > > > Sent from Mail <https://go.microsoft.com/fwlink/?LinkId=550986> for > Windows 10 > > > ------------------------------ > *From:* [email protected] <[email protected]> > *Sent:* Tuesday, September 17, 2019 5:10:01 AM > *To:* Digest recipients <[email protected]> > *Subject:* [CMLHope] Digest for [email protected] - 7 updates in 2 > topics > > [email protected] > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> > Google > Groups > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > Topic digest > View all topics > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> > > - Not getting any mail <#m_6623427294975379539_group_thread_0> - 6 > Updates > - Is this correct <#m_6623427294975379539_group_thread_1> - 1 Update > > Not getting any mail > <http://groups.google.com/group/cmlhope/t/1cabbe0269ae2e77?utm_source=digest&utm_medium=email> > icandoallttc <[email protected]>: Sep 16 11:52AM -0400 > > Hello > I am not receiving any mail from group. Has this group shut down. > Anyway Igor a letter in the mail saying AcariaHealth would handle my > Ponatinib from now on. I never heard from them and think itās fraud. Anyone > else heard this. Hope everyone is great. > > My Motto: > Faith and Pills > With Love > Jeanie > š free > Christian > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/ 2015 15 mg > New Doctor--Dr Martine Extermann > Moffitt Cancer center sept 2017 > Dr Balducci retired > Dr Gedia PCD > 0 CBL. ABL > July 2018 dx with thyroid disease tsh 13 > T4-normal t3-normal > [email protected]: Sep 16 04:06PM > > HI Jeannie. I have not heard from anyone in a long while. This is Beth. > Hope everyone out there is hanging in there.. My best to all of you.. > > KIndest regards, 18's for Marty and hugs to all.. > Beth > > > -----Original Message----- > From: 'icandoallttc' via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Mon, Sep 16, 2019 10:52 am > Subject: [CMLHope] Not getting any mail > > HelloI am not receiving any mail from group. Has this group shut down. > Anyway Igor a letter in the mail saying AcariaHealth would handle my > Ponatinib from now on. I never heard from them and think itās fraud. Anyone > else heard this. Hope everyone is great. > My Motto:Faith and PillsWith LoveJeanieš freeChristian Dx 1/2004 CML > LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel > 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine > ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 > CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal-- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > To view this discussion on the web visit > https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com > . > Joyce Mesnarich <[email protected]>: Sep 16 02:08PM -0500 > > Hi Jeanie. > I think we all have just become quiet on this site. I have received no > mail either. My husband is the CML patient. I am his caregiver. He is > presently taking Bosulif. I donāt know anything about Ponatinib, so I canāt > help you. But I, too, would be skeptical of getting meds from a place I > didnāt know anything about. > My husband was previously seeing Dr Talpaz in Michigan. We live in > Southern Illinois. So it was an expensive trip and as we have gotten older > we found it is just too much for us. We found a doctor at Siteman Cancer > Center in St Louis (50 miles from us) and started going to him. He is > elderly himself. The last 2 times we went we saw his PA. She seems good but > certainly is not up to Dr Talpaz standards. We fear that his new doctor may > be slipping a bit and they are keeping him from seeing patients. My husband > is doing well as far as CML goes. But time is taking its toll. He has very > low energy. Donāt know if that is the CML or the medication. > I hope you are feeling well. I know you have had some problems in the > past. I have been in this group since 2008. Seems most everybody is gone. > Sad. > Joyce in Southern Illinois > > > [email protected]: Sep 16 08:51PM > > That's funny that you put out a post, I was going send one also like > (hello, is anyone out there). I don't have to now. Thanks for posting. > greenie > > -----Original Message----- > From: Joyce Mesnarich <[email protected]> > To: cmlhope <[email protected]> > Sent: Mon, Sep 16, 2019 3:08 pm > Subject: Re: [CMLHope] Not getting any mail > > Hi Jeanie.I think we all have just become quiet on this site. I have > received no mail either. My husband is the CML patient. I am his > caregiver. He is presently taking Bosulif. I donāt know anything about > Ponatinib, so I canāt help you. But I, too, would be skeptical of getting > meds from a place I didnāt know anything about. My husband was previously > seeing Dr Talpaz in Michigan. We live in Southern Illinois. So it was an > expensive trip and as we have gotten older we found it is just too much for > us. We found a doctor at Siteman Cancer Center in St Louis (50 miles from > us) and started going to him. He is elderly himself. The last 2 times we > went we saw his PA. She seems good but certainly is not up to Dr Talpaz > standards. We fear that his new doctor may be slipping a bit and they are > keeping him from seeing patients. My husband is doing well as far as CML > goes. But time is taking its toll. He has very low energy. Donāt know if > that is the CML or the medication. I hope you are feeling well. I know you > have had some problems in the past. I have been in this group since 2008. > Seems most everybody is gone. Sad. Joyce in Southern Illinois > > > On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope < > [email protected]> wrote: > > HelloI am not receiving any mail from group. Has this group shut down. > Anyway Igor a letter in the mail saying AcariaHealth would handle my > Ponatinib from now on. I never heard from them and think itās fraud. Anyone > else heard this. Hope everyone is great. > My Motto:Faith and PillsWith LoveJeanieš freeChristian Dx 1/2004 CML > LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel > 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine > ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 > CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > To view this discussion on the web visit > https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com > . > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > To view this discussion on the web visit > https://groups.google.com/d/msgid/cmlhope/B1E43834-6B94-4F1D-BE03-DDDA23F4E805%40htc.net > . > [email protected]: Sep 17 03:10AM > > -----Original Message----- > From: Joyce Mesnarich <[email protected]> > To: cmlhope <[email protected]> > Sent: Mon, Sep 16, 2019 2:08 pm > Subject: Re: [CMLHope] Not getting any mail > > Hi Jeanie.I think we all have just become quiet on this site. I have > received no mail either. My husband is the CML patient. I am his > caregiver. He is presently taking Bosulif. I donāt know anything about > Ponatinib, so I canāt help you. But I, too, would be skeptical of getting > meds from a place I didnāt know anything about. My husband was previously > seeing Dr Talpaz in Michigan. We live in Southern Illinois. So it was an > expensive trip and as we have gotten older we found it is just too much for > us. We found a doctor at Siteman Cancer Center in St Louis (50 miles from > us) and started going to him. He is elderly himself. The last 2 times we > went we saw his PA. She seems good but certainly is not up to Dr Talpaz > standards. We fear that his new doctor may be slipping a bit and they are > keeping him from seeing patients. My husband is doing well as far as CML > goes. But time is taking its toll. He has very low energy. Donāt know if > that is the CML or the medication. I hope you are feeling well. I know you > have had some problems in the past. I have been in this group since 2008. > Seems most everybody is gone. Sad. Joyce in Southern Illinois > > > On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope < > [email protected]> wrote: > > HelloI am not receiving any mail from group. Has this group shut down. > Anyway Igor a letter in the mail saying AcariaHealth would handle my > Ponatinib from now on. I never heard from them and think itās fraud. Anyone > else heard this. Hope everyone is great. > My Motto:Faith and PillsWith LoveJeanieš freeChristian Dx 1/2004 CML > LeukemiaStarted Gleevec 2/2004Started Tasigna 9/2009Started Sprycel > 11/2009Started Ponatinib 1/ 2015 15 mgNew Doctor--Dr Martine > ExtermannMoffitt Cancer center sept 2017Dr Balducci retired Dr Gedia PCD0 > CBL. ABLJuly 2018 dx with thyroid disease tsh 13T4-normal t3-normal > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > To view this discussion on the web visit > https://groups.google.com/d/msgid/cmlhope/7D3D7A1F-0B96-4EE1-A9D0-A1679422842F%40aol.com > . > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > To view this discussion on the web visit > https://groups.google.com/d/msgid/cmlhope/B1E43834-6B94-4F1D-BE03-DDDA23F4E805%40htc.net > . > educatorsusan <[email protected]>: Sep 16 11:24PM -0400 > > Iām still here! > > Hugs, > Susan Rosenthal > > Back to top <#m_6623427294975379539_digest_top> > Is this correct > <http://groups.google.com/group/cmlhope/t/36450554c47d46de?utm_source=digest&utm_medium=email> > icandoallttc <[email protected]>: Sep 16 11:53AM -0400 > > My Motto: > Faith and Pills > With Love > Jeanie > š free > Christian > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/ 2015 15 mg > New Doctor--Dr Martine Extermann > Moffitt Cancer center sept 2017 > Dr Balducci retired > Dr Gedia PCD > 0 CBL. ABL > July 2018 dx with thyroid disease tsh 13 > T4-normal t3-normal > Back to top <#m_6623427294975379539_digest_top> > You received this digest because you're subscribed to updates for this > group. You can change your settings on the group membership page > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/join> > . > To unsubscribe from this group and stop receiving emails from it send an > email to [email protected]. > > -- > -- > [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 [email protected] > To unsubscribe from this group, send email to > [email protected] > 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 [email protected]. > To view this discussion on the web visit > https://groups.google.com/d/msgid/cmlhope/DM5PR1001MB221821A0BCE4D041C8E264DFD18F0%40DM5PR1001MB2218.namprd10.prod.outlook.com > <https://groups.google.com/d/msgid/cmlhope/DM5PR1001MB221821A0BCE4D041C8E264DFD18F0%40DM5PR1001MB2218.namprd10.prod.outlook.com?utm_medium=email&utm_source=footer> > . > -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. To view this discussion on the web visit https://groups.google.com/d/msgid/cmlhope/CAFyQvgKTdVvpg3sVAqNosx%3DaUGVv1ASGxWJ6SC_Xfp5btw4r7g%40mail.gmail.com.
