Comments on: An Unexpected Left Turn? http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/ The Story of an Elective Cord Blood Stem Cell Transplant Wed, 08 Feb 2012 19:59:24 +0000 http://wordpress.org/?v=2.3.3 By: Jane B http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1032 Jane B Fri, 20 Jun 2008 11:03:51 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1032 Many thanks to you both for the journal. I know that it has inspired several people in the UK to go beyond pallitive treatment. I'm saddened that you have had this problem, with all that you know and understand. It is a totally unreasonable situation. After some years of dealing with UK doctors, most of whom are very good, I have learnt that just as in anything else I have to be very specific about what I ask for, smile, and ask again. We often don't have the degree of control that we would like to have in medical situations, and can't anticipate everything however much we know. Don't be hard on yourself. Wishing Harvey and yourself all the best and a swift happy resolution to this. Many thanks to you both for the journal. I know that it has inspired several people in the UK to go beyond pallitive treatment. I’m saddened that you have had this problem, with all that you know and understand. It is a totally unreasonable situation. After some years of dealing with UK doctors, most of whom are very good, I have learnt that just as in anything else I have to be very specific about what I ask for, smile, and ask again.
We often don’t have the degree of control that we would like to have in medical situations, and can’t anticipate everything however much we know. Don’t be hard on yourself.
Wishing Harvey and yourself all the best and a swift happy resolution to this.

]]> By: graham http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1028 graham Thu, 19 Jun 2008 19:25:16 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1028 Hi Chaya, We hope and pray that PC continues to make good progress and that this latest concern does not turn out to be a major problem. This journal is both informative and brave - a real inspiration as to what can be done to beat this disease while at the same time not holding anything back about the cost of such a course of action. Thanks as well as best wishes to you both. Graham & Andrea Hi Chaya,

We hope and pray that PC continues to make good progress and that this latest concern does not turn out to be a major problem.

This journal is both informative and brave - a real inspiration as to what can be done to beat this disease while at the same time not holding anything back about the cost of such a course of action.

Thanks as well as best wishes to you both.

Graham & Andrea

]]> By: Nancy Simpson http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1026 Nancy Simpson Thu, 19 Jun 2008 02:28:01 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1026 You are both always in my mind and heart. Hope all is going well. Every day you are closer to freedom and safety and being healed. Brian Koffman gets his transplant on the first. In some ways I feel that you both are leaving me. That you will both be free of this and I am so excited you escaped, you made it to the promised land. I am stuck here in the thick of it, and I wonder more each day about a transplant for me. I love you Chaya and PC! What you did helps others to get the courage to do it also~ Your CLL topics has changed the face of CLL for all of us, many thanks. You are both always in my mind and heart. Hope all is going well. Every day you are closer to freedom and safety and being healed. Brian Koffman gets his transplant on the first. In some ways I feel that you both are leaving me. That you will both be free of this and I am so excited you escaped, you made it to the promised land. I am stuck here in the thick of it, and I wonder more each day about a transplant for me. I love you Chaya and PC! What you did helps others to get the courage to do it also~ Your CLL topics has changed the face of CLL for all of us, many thanks.

]]> By: Stan Wencley http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1025 Stan Wencley Thu, 19 Jun 2008 02:16:01 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1025 Dear Chaya & Harvey, I'm a ten year "smoldering" & still symptom free-almost- untreated cll carrier. I have basil growths removed from my nose & shin. Today on ABC they did a story on the Fred Hutchenson break thru Melenoma cure. It seems that they grew the cancer fighting cells from the hosts immune system. They then introduced them into the Melanoma cell growth & reported that the Melanoma cells died & that no other M-cells were found! I am one of your grateful & prayer full readers. Thank you. Stan Dear Chaya & Harvey, I’m a ten year “smoldering” & still symptom free-almost- untreated cll carrier. I have basil growths removed from my nose & shin. Today on ABC they did a story on the Fred Hutchenson break thru Melenoma cure. It seems that they grew the cancer fighting cells from the hosts immune system. They then introduced them into the Melanoma cell growth & reported that the Melanoma cells died & that no other M-cells were found!

I am one of your grateful & prayer full readers. Thank you. Stan

]]> By: diane http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1024 diane Wed, 18 Jun 2008 22:50:36 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1024 Good luck to Harvey I admire his fight and know how hard it is for a wife to sit by and watch. God bless you both and show us all the battle can be won. Good luck to Harvey I admire his fight and know how hard it is for a wife to sit by and watch. God bless you both and show us all the battle can be won.

]]> By: diane http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1023 diane Wed, 18 Jun 2008 22:48:40 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1023 Do not ever under estimate or let your physician under estimate CLL by calling it the "good kind of cancer". It can be a killer no matter what chemo regimine you throw at it. My husband died after 62 healthy years and after a three year struggle and three chemo treatments. Richter's transformation is deadly and if at all possible go for a bone marrow transplant at the first sign of a possible remission. Don't wait and hope it will go away. Do not ever under estimate or let your physician under estimate CLL by calling it the “good kind of cancer”. It can be a killer no matter what chemo regimine you throw at it. My husband died after 62 healthy years and after a three year struggle and three chemo treatments. Richter’s transformation is deadly and if at all possible go for a bone marrow transplant at the first sign of a possible remission. Don’t wait and hope it will go away.

]]> By: Grant http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1016 Grant Tue, 17 Jun 2008 15:33:44 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1016 Ah, dermatology! Interpreting skin spots seems to be the medical equivalent of reading tea leaves!! After a squamous cell lesion led me to a dermatologist some years ago, I began the ritual of semi-annual full-body checkups, purportedly so that any further skin cancer would be caught early and removed with the least risk and discomfort. Well, not exactly. A small spot on the bridge of my nose was passed over repeatedly until late last year when I asked about it, and the dermatologist casually decided to do a biopsy. It was a basal cell lesion. I had Mohs surgery which left me with a "defect" (i.e. a big hole - I love medical vocabulary) which was then repaired by a cosmetic surgeon. Not a terribly unpleasant experience, but it reinforced my belief that patients need to be active participants in their care and engage their physicians. Obviously, a skin cancer, even something as innocuous as basal or squamous cell is nothing to toy with when one's immune system is on sabbatical. You are absolutely right to stay on top of this thing. Hopefully it is nothing of consequence. All my best to you and Harvey. Keep the faith and keep up the fight. You are an inspiration! -Grant Ah, dermatology! Interpreting skin spots seems to be the medical equivalent of reading tea leaves!!

After a squamous cell lesion led me to a dermatologist some years ago, I began the ritual of semi-annual full-body checkups, purportedly so that any further skin cancer would be caught early and removed with the least risk and discomfort.

Well, not exactly. A small spot on the bridge of my nose was passed over repeatedly until late last year when I asked about it, and the dermatologist casually decided to do a biopsy. It was a basal cell lesion. I had Mohs surgery which left me with a “defect” (i.e. a big hole - I love medical vocabulary) which was then repaired by a cosmetic surgeon. Not a terribly unpleasant experience, but it reinforced my belief that patients need to be active participants in their care and engage their physicians.

Obviously, a skin cancer, even something as innocuous as basal or squamous cell is nothing to toy with when one’s immune system is on sabbatical. You are absolutely right to stay on top of this thing. Hopefully it is nothing of consequence.

All my best to you and Harvey. Keep the faith and keep up the fight. You are an inspiration!

-Grant

]]> By: Beth and John http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1015 Beth and John Tue, 17 Jun 2008 14:08:18 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1015 Dear Chaya: Sorry I have not checked your journal in a while--life takes you away--floods in Iowa that have affected us only slightly, a death in the family of a dear aunt--it's called life. I am glad to see that you are both hanging in there. I hope for good news on the skin biopsy. I love and admire you both, Beth Havey Dear Chaya:
Sorry I have not checked your journal in a while–life takes you away–floods in Iowa that have affected us only slightly, a death in the family of a dear aunt–it’s called life. I am glad to see that you are both hanging in there. I hope for good news on the skin biopsy. I love and admire you both,

Beth Havey

]]> By: BarryB http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1013 BarryB Tue, 17 Jun 2008 12:27:59 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1013 Chaya, Been away for six days and had computer problems before that. I have been plagued with skin problems since 1977. My first dermatologist insisted I use topical creams to clean up my head. After 28 years I learned that the creams contained a chemo drug and the pharmas acknowledged that these creams can cause problems with white blood cells (Duh!). Parallel to the findings I realized that the scalp was developing more actinius, basal cell, and squamous cell growths. When I saw Dr. Keating at MDA last July, his first reaction was to cover my exposed skin all the time, which I have been doing since 1977. He reviewed with my wife and me the potential problems of skin cell carcinomas when one has CLL. OK! Now what? I have been gassed (CO2)regularly since 2005 when I dropped the cream use every six months. After my last bout with sqauamous cell carcinoma in May 2008, I am now on a three month schedule to see my dermatologist. I agree with all the other writers here that biopsies are a requirement every time a bad looking patch appears on one's skin. You need to just make a specific demand for biopsies. Geez, when is the medical field going to recognize the inter-relationships that exist within our own bodies that present such a case as PCs? Both of you hang in there. It will get better! Barry Chaya,

Been away for six days and had computer problems before that. I have been plagued with skin problems since 1977. My first dermatologist insisted I use topical creams to clean up my head. After 28 years I learned that the creams contained a chemo drug and the pharmas acknowledged that these creams can cause problems with white blood cells (Duh!). Parallel to the findings I realized that the scalp was developing more actinius, basal cell, and squamous cell growths. When I saw Dr. Keating at MDA last July, his first reaction was to cover my exposed skin all the time, which I have been doing since 1977. He reviewed with my wife and me the potential problems of skin cell carcinomas when one has CLL. OK! Now what? I have been gassed (CO2)regularly since 2005 when I dropped the cream use every six months. After my last bout with sqauamous cell carcinoma in May 2008, I am now on a three month schedule to see my dermatologist. I agree with all the other writers here that biopsies are a requirement every time a bad looking patch appears on one’s skin. You need to just make a specific demand for biopsies. Geez, when is the medical field going to recognize the inter-relationships that exist within our own bodies that present such a case as PCs?

Both of you hang in there. It will get better!

Barry

]]> By: Anna http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1011 Anna Mon, 16 Jun 2008 18:57:46 +0000 http://www.journal.clltopics.org/2008/06/09/an-unexpected-left-turn/#comment-1011 Thank you, thank you for writing about Harvey's skin condition. I am confident that you will hear good new about it. I have been ignoring a "dry patch" which I have had on my face for some time now. I will definitely see a dermatoligist ASAP. Any long-term hospital experience can be terrifying at worst and frustrating at best (I spent 3mos with my son who sustained a head injury due to an auto accident at age 16). Harvey must be an incredibly resilient man and is most fortunate to have you on his side (as are we all). It will all be worth it when you and Harvey can go home to beautiful Sedona. I think of and pray for you and Harvey daily. I know that all will be well. Thank you again for all that you do for those of us with CLL. Take care, Anna Thank you, thank you for writing about Harvey’s skin condition. I am confident that you will hear good new about it. I have been ignoring a “dry patch” which I have had on my face for some time now. I will definitely see a dermatoligist ASAP.

Any long-term hospital experience can be terrifying at worst and frustrating at best (I spent 3mos with my son who sustained a head injury due to an auto accident at age 16). Harvey must be an incredibly resilient man and is most fortunate to have you on his side (as are we all). It will all be worth it when you and Harvey can go home to beautiful Sedona.

I think of and pray for you and Harvey daily. I know that all will be well.
Thank you again for all that you do for those of us with CLL.

Take care,
Anna

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