Assorted Emails from different folks and myself expressing the concern we had
for Mom receiving Chemo, especially with her having O.I. At this point in time
no order of presentation is made. Dear Dave:
I am sorry to know about your mother. I have not been following the list
very closely lately (mostly due to the overload of nasty messages). Please
update me. Where do they think the problem originates? I am a pediatrician,
and I have worked with children with cancer in the past. Chemo is bad, but
I have seen lots of children surviving thanks to it. Pamidronate is used to
treat hypercalcemia caused by certain types of cancer, it may also help
your mother to prevent fractures and reduce pain. But of course that has to
be determined by the specialists.
Hope this helps.
Best regards,
Horacio Plotkin, M.D.
Clinical Research Coordinator
Genetics Unit
Shriners Hospital for Children
Montreal, Canada
http://geocities.datacellar.net/CapeCanaveral/Lab/3608/
http://www.carone.com/genetics/
----------
From: LIBERTY <libertee@citrus.infi.net>
To: hplotkin@shriners.mcgill.ca
Subject: Mother said to have Cancer
Date: Thursday, June 17, 1999 10:12 AM
Mom is going in for a cat scan today. They seem to be rushing things, which
I don't think is necessarily good, because there are not to many doctors
around here that are familiar with her condition. I really don't even want
her to get a cat scan because of the radiation. I thought maybe the same
results might be attainable with a MRI? With all the x-rays, she has had,
through her lifetime and with radiation having a accumulative effect I can
only surmise that less would be best and preferred!
I am fearful that the radiation accumulated over the years may have
resulted
in this cancer.
I don't believe Mom could take chemo, I know it makes you deadly sick, even
when younger folks take it (I had a nephew who underwent it, and he finally
succumbed (he was 23). The disease is bad enough, but the time you have
left
is made ten times worst because of the chemo.
Right now her general condition seems to be rather good. She can walk with
the assistance of two canes, go out to dinner, go to the race track, etc.
If
this treatment starts that will put an end to that. In other words, she is
able to enjoy herself, pretty much right now and I wish she could maintain
that for as long as possible.
We really haven't been under any doctor's care for OI in probably over
twenty years, no specialists, that is. As I mentioned before there doesn't
seem to be very many doctors in this area that seem to have much of a
handle
on it when it comes to OI.
If anything, I think there should be a meeting of the minds between some
doctors who have had some experience with this cancer and how it effects
people with Mom's disease. I am fearful that the chemo will make her bones
even more brittle. If you could offer any suggestions, it would be greatly
appreciated, and the sooner the better.
Twenty years ago, an emergency room doctor, after looking at some of my
x-rays for a sore hip, had said, that I had bone cancer. Well, although
this is not the same circumstances, it does indicate that the realm of
knowledge in this area is lacking.
If there is anyone with some info helpful, or not, please reply.
Thank You
Dave G. (Liberty)
Dear Dave:
Lymphoma is a malignant disease of the lymph nodes, therefore the rule that
you mention regarding the lymph nodes does not apply. There are two types
of lymphoma, Hodgkin and No-Hodgkin. The differentiation is made with a
biopsy of the lesion.
I have not seen patients with OI going through chemotherapy. As far as I
know, it should not be different than with any other person.
I am sorry I can not be of more help.
Best regards,
Horacio Plotkin, M.D.
Clinical Research Coordinator
Genetics Unit
Shriners Hospital for Children
Montreal, Canada
http://geocities.datacellar.net/CapeCanaveral/Lab/3608/
http://www.carone.com/genetics/
----------
From: LIBERTY <libertee@citrus.infi.net>
To: Horacio Plotkin <hplotkin@shriners.mcgill.ca>
Subject: Mother
Date: Monday, June 21, 1999 11:52 AM
Dear Doctor
I spoke with a Doc. Sunil Gandhi, the physician treating Mom. She and Dad
have an appointment today at 145pm, I will be going to. He told me that she
has lympnoma. If I understood him correctly, he indicated that it wasn't
throughout the body yet? Was mostly in the skin? He said that there is a
good chance for recovery with chemo therapy. But I had always thought that
once it is in your lymnodes you pretty well have had it.
Mom is 78, and he really didn't seem to positive on how chemo would affect
her, not just with her age, but more importantly with O.I. I realize you
are an pediatric physician, but have you seen the effects of chemo on
individuals with O.I.?
Would appreciate anymore imput you could add.
Thanks in Advance
Dave Gregory
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citations 1-50 displayed (out of 97 found), page 1 of 2
Strahlenther Onkol 1994 Nov;170(11):665-7
[Osteogenesis imperfecta and breast carcinoma. A case study of
radiobiological interest].
[Article in German]
Bohler FK, Rhomberg W
Landeskrankenhaus Feldkirch, Abteilung fur Radioonkologie, Osterreich.
PURPOSE: Osteogenesis imperfecta (OI) is an inherited disorder of
connective tissue with abnormal quality and/or quantity of type 1 collagen.
The frequency of the association of OI and breast cancer as well as the
frequency of radiation induced side-effects in patients with OI are not known.
Certain diseases with widespread collagen alterations such as systemic lupus
erythematodes or dermatomyositis--although not exactly comparable to
congenital OI--carry a high risk for radiation injuries in case of irradiation
with normal doses. The report of a patient with osteogenesis imperfecta type I
and postmastectomy irradiation might therefore be of some radiobiological
interest. METHODS: Report of a 46-year-old women with OI type I and breast
cancer with a 14-year follow-up time after mastectomy and external beam
irradiation. RESULTS: During all the follow-up time there was no radiation
injury in this patient with OI type I and breast cancer. CONCLUSION: Mostly it
is not possible to draw a valid conclusion from a case report, but with this
experience the combination of OI type I and radiotherapy seems not to cause
unusual radiation injury. Contrary to OI of type II and III, in the majority
of the cases of OI type I there is a normal quality, but diminished quantity
of collagen type I. This could be one of the possible reasons for the absence
of adverse radiation effects. Finally, it might be of interest, that the
gene-locus of the two alpha-1(I)-chains of collagen type I is situated at
chromosome 17q21-22, where also the location of the "breast-cancer
gene" is supposed to be. A genetic examination was, unfortunately,
refused by the patient.
Publication Types:
Review
PMID: 7974182, UI: 95064491
Am J Ind Med 1999 Jul;36(1):155-8
Dave, the next one may be significant as it concerns exposure, I am
assuming this includes exposure to x-rays, and increases in cancer of health
professionals. May be a link to your mom's years of x-rays and possible
cancer?
Cancer mortality in health and science technicians.
Burnett C, Robinson C, Walker J
Division of Surveillance, Hazard Evaluations, and Field Studies, National
Institute for Occupational Safety and Health, Cincinnati, Ohio 45226, USA.
CAB9@CDC.GOV
[Medline record in process]
BACKGROUND: Nearly one million U.S. women are employed as health or science
technicians with various chemical and biological exposures, but few studies
have looked at their health outcomes. METHODS: Using 1984-1995 mortality data
with coded occupation information, we calculated race- and age-adjusted
proportionate cancer mortality ratios (PCMRs) and 95% confidence intervals for
two age groups for black and white women with occupations of clinical
laboratory (CLT), radiologic, and science technician. RESULTS: For CLTs, the
PCMRs for breast cancer were borderline significantly elevated. The PCMRs for
leukemia were significantly elevated, particularly for myeloid leukemia.
Radiologic technicians had no significantly elevated PCMRs. Science
technicians had significantly elevated PCMRs for non-Hodgkin's lymphoma and
multiple myeloma in the younger age group. DISCUSSION: The elevated risks for
lymphatic and hematopoietic neoplasms in CLTs and science technicians may be
associated with occupational exposures.
PMID: 10361601, UI: 99289952
Am J Ind Med 1999 Jul;36(1):60-9
Occupational, environmental, and life-style factors associated with the
risk of hematolymphopoietic malignancies in women.
Miligi L, Seniori Costanini A, Crosignani P, Fontana A, Masala G, Nanni O,
Ramazzotti V, Rodella S, Stagnaro E, Tumino R, Vigano C, Vindigni C, Vineis P
Epidemiology Unit, Center for Study and Prevention of Cancer, Az.
Ospedaliera Careggi, Florence, Italy. epid@ats.it
[Medline record in process]
BACKGROUND: The etiology of lymphomas, leukemias, and multiple myeloma is
still largely unknown. The known risk factors (ionizing radiation, solvent
exposure, pesticide exposure, immunosuppression) explain only a small
proportion of the cases that occur. METHODS: We conducted a multicenter
population-based case-control study on hematolymphopoietic malignancies in
Italy and interviewed 2,011 women (1,183 cases and 828 controls). RESULTS:
There was a suggestion of a positive association between smoking and the risk
of non-Hodgkin's lymphoma + chronic lymphocytic leukemia. A slight increased
risk of leukemias was observed among women using permanent hair dye.
Housewives were at increased risk for leukemia and multiple myeloma. The risk
of non-Hodgkin's lymphomas + chronic lymphocytic leukemia, leukemias, multiple
myeloma, and Hodgkin's disease increased among women employed as hairdressers
and textile workers. Teachers were at increased risk for non-Hodgkin's
lymphomas + chronic lymphocytic leukemia, leukemias, and Hodgkin's disease.
CONCLUSIONS: These results confirm previous associations and may provide
additional clues to some determinants of hematolymphopoietic malignancies in
women.
PMID: 10361588, UI: 99289939
Leukemia 1999 Jun;13(6):950-6
Intensive sequential chemotherapy (ISC 95) with growth factors and blood
stem cell support in high-intermediate and high-risk (IPI 2 and IPI 3)
aggressive non-Hodgkin's lymphoma: an oligocentric report on 42 patients.
Bouabdallah R, Stoppa AM, Rossi JF, Lepeu G, Coso D, Xerri L, Ladaique P,
Chabannon C, Blaise D, Bardou VJ, Alzieu C, Gastaut JA, Maraninchi D
Department of Hematology, Institut J Paoli-I Calmettes, Regional Cancer
Center-Universite de la Mediterranee, Marseille, France.
[Medline record in process]
We previously reported feasibility and efficacy of a monocentric pilot
study of intensive sequential chemotherapy (ISC) in poor-risk aggressive
non-Hodgkin's lymphoma (NHL) in patients < 60 years. To validate these
results on a large cohort of patients, we designed a new and oligocentric
study. After a COP (cyclophosphamide (Cy), vincristine (Vcr), prednisone (Pred)
debulking, patients received four courses of high-dose CHOP (Cy, doxorubicin (Doxo),
Ver, Pred), with the addition of etoposide and cisplatin during the two last
courses. G-CSF was delivered after each cycle, and peripheral blood stem cells
(PBSC) were used to support the two last cycles. Total duration of
chemotherapy was 13 weeks, with a planned dose-intensity (DI) of 1420
mg/m2/week and 23 mg/m2/week for Cy and Doxo, respectively. Radiotherapy
(involved fields) was then delivered for patients with node size > or = 5
cm at diagnosis. Forty-two patients were enrolled in this study; 36 completed
the treatment and received 75% or more of the planned DI for both Cy and Doxo.
Median duration of grade 4 neutropenia was 14 days (range, 2 to 28) for the
regimen as a whole, and median duration of rehospitalization for febrile
neutropenia was 18 days (range, 4 to 41). Overall response rate was 83%, with
29 patients (69%) in complete response (CR). Six patients failed to respond
and one died of toxicity. With a median follow-up of 22.5 months (range, 10 to
42), the 3-year event-free survival (EFS) is 55% (95% CI, 39-71), while
disease-free survival (DFS) is 79% (95% CI, 63-95). Ambulatory ISC is
accessible and feasible in an oligocentric study. PBSC allow repeated delivery
of high-dose chemotherapy cycles, and result in encouraging CR, EFS, and DFS
rates for poor-risk aggressive NHL's patients.
PMID: 10360385, UI: 99287130
THE E-MAIL COMES AT MY HOME , I DO NOT KNOW THE
RESULT OFF HAND, WE WILL DISCUSS AT HER NEXT VISIT.
Hi Doctor
Hope your feeling well today. This is Dave
Gregory, you will be treating my mother Rita, in the near future. I was
writing to double check on her heart's ability to withstand chemo?
Does it appear to be OK?
Thanks
Dave Gregory
David, it was nice talking to you. I hope all goes well.
J. Bennett
----- Original Message -----
Sent: Friday, August 06, 1999 9:14 PM
Subject: MOTHER
Dear Dr. Bennett
My mother Rita Gregory started Chemo about three weeks ago.
Her next Chemo session is this coming Monday. She has been diagnosed with
non-Hodgkin's lymphoma. She has already lost all her hair. She is 77 years
old. Dr. Gandhi from Lecanto is treating her. She has osteogensis
imperfecta.
I wanted her to get a second opinion and Dr. Gandhi office
was requested for her medical information. He telephoned my parents the
day of the request and scared the hell out of them. Paraphrasing my folks,
he told them that it didn't manner where she went, including Moffett or
any other cancer treatment facility the diagnose would be the same and
that she needed to receive treatments right away. So my parents
immediately dismissed my efforts to get a second opinion.
Whether this may be true, or not, I feel that it was a
totally unethical move to make!
I have read your article (990323.htm-The Complex Issue of
Lymphoma) and it would seem to indicate that there are many variables in
regards to this disease and the appropriate treatment thereof. Do you
believe it would be advisable for my mother to still get a second opinion? Or,
should I just let the manner rest?
Sincerely
David J. Gregory
352-628-0680
From: LIBERTY
To: Kat
; Zac
; judith severy
; Jeff
; Bobby
; Bill & Shelly Hill
; Bill & Helen
; Aline & Corky
Subject: MOM Date: Thursday, September 23, 1999 7:48 PM Mom is feeling a lot
better than 3 or 4 weeks ago. Guess she won't be getting anymore chemo, she
didn't tolerate it very well. She has a new electric wheelchair which she enjoys
very much. She enjoys getting email so if you send me some send copies to her,
or vise versa. That computer over at her house is pretty temperamental so I am
the one who has to operate it. But anyhow, she enjoys getting it there and asks
me to check it for her when I am there. Aunt Helen and Uncle Bill, I know you
guys were there just a few days ago, thought I would include you in this email
to save myself a little time. Glad you had a safe trip home, it was good seeing
you. If anyone would like to leave a voice mail for me the number is below, it's
a toll free #. Check out our revamped site. Bye for now Dave ps Mom & Dad's
email address is geronimo@citrus.infi.net Please check out our all in one,
ONE-STOP ONLINE SHOPPING EXPERIENCE, INCLUDING CHAT PAGES AND MORE! http://northernexposurerevisited.virtualave.net/
Call our new toll free voice mail number: 1-888-392-4832 Extension: 335-483-7437
which spells deliveries! There is also the option to fax us via this number,
listen to the directions.
From: LIBERTY
To: Doc. Gandhi
Subject: MOTHER Date: Sunday, August 29, 1999 8:13 PM Dr. Gandhi My mother
spent an unrest weekend. I fear she may have fractured more ribs. She has eaten
very little. It is difficult even moving her in bed. She has lost all her
strength. I have kept a close watch on her temperature and she hasn't had any.
Yet she continues to cough, causing her great discomfort. If she does not regain
some strength I can't possible see how she could withstand another chemo
session. David Gregory
From: LIBERTY
To:
Subject: Re: MOM Date: Monday, September 27, 1999 8:43 AM ----- Original
Message ----- From:
To:
Sent: Sunday, September 26, 1999 7:35 PM Subject: Re: MOM > In a message
dated 9/23/99 8:49:28 PM Eastern Daylight Time, > libertee@citrus.infi.net
writes: > > << > Mom is feeling a lot better than 3 or 4 weeks
ago. Guess she won't be > getting anymore chemo, she didn't tolerate it very
well. She has a new > electric wheelchair which she enjoys very much. >
> Hey! I'm glad to here that she is feeling better. Was her chemo over
already? > I'm glad to hear she likes her wheelchair. I didn't realize that
she had to > use one. When did she start that? She really went downhill with
the chemo, she could barely turn over in bed only after two treatments, don't
know what is next, she may begin it again, hopefully with a different doctor.
This one didn't take into account her prior medical condition. She enjoys
getting email so if you send me some send copies to her, or vise > versa.
That computer over at her house is pretty temperamental so I am the > one who
has to operate it. But anyhow, she enjoys getting it there and asks > me to
check it for her when I am there. > > I'll send her some email. > >
ps Mom & Dad's email address is geronimo@citrus.infi.net > > Where has
time gone??? Have I written to you since our grandbaby was born? > Kyle
Jackson Campbell, 20 Aug. 1999. Don't think I heard about the grandbaby,
Congratulations! > > Well, I'm off to do homework for my computer class.
Talk to you later. > Kathy > >
From: LIBERTY
To:
Subject: Re: Mother Date: Tuesday, August 10, 1999 6:47 PM Hi folks Mom had a
pretty good day today. She had a Chemo session yesterday. She has to go back
every day to have a dose of antibiotics, her immune system is way down. I had to
go to Orlando airport last night, got back 3am. Got to go to Tampa tomorrow
(Wed. morning at 3am). I got Mom some of those face masks to try and keep the
germs away from her. It's early, but I am beat, so I'll talk to you later Dave
----- Original Message ----- From:
To:
Sent: Tuesday, August 10, 1999 5:16 PM Subject: Mother > Just wondered how
your mother is doing.. Wasnn't she suppose to have her > second treatment
this week. How is Bernard holding up thru all this. > Had oil tank filled
Monday and turned on furnace this morning for a minute to > take off the
chill. Good weather to get work done!! > Stopped at Severys today but they
weren;t home MAKE a few pit stops every > now and then. They have quite a
little going on with them too > > > > Aline > The Vermont
Socialite >
From: Liberty
To: jeffrey c. hill
Subject: Re: rita Date: Sunday, August 08, 1999 12:04 PM ----- Original Message
----- From: jeffrey c. hill
To:
Sent: Saturday, August 07, 1999 9:41 PM Subject: rita > david, i will be to
visit your mother on the 23rd of august. can you verify that she will be there?
As far as I know, she will be there. She takes a second dose of Chemo tomorrow.
They don't go to far away from the house. > > is there anything i can bing
to comfort her. Just yourself. Dave > > jeff > > > Don't forget
to sign up for FREE e-mail on > http://www.medmail.com - The E-mail >
service for the Medical Community >
From: Liberty
To: judith severy
Subject: Re: severy Date: Wednesday, September 15, 1999 8:48 AM Hi Uncle
Charles & Aunt Lorraine Mom didn't have the treatment Monday, thought she
was coming down with a cold, not sure, today (Wednesday) she is suppose to go
back out there I guess. She is 100% better than she was when you all were down
here. She is moving well and walking with aid, her stomach has even gone down.
Unfortunately, I fear she will just go back the other way when she begins chemo
again. She is schedule to go to another Doctor on Thursday. I have done a lot of
work setting up appointments and getting records, but it usually gets all
screwed up with the folks canceling and changing their minds on things. I have
no idea if they will make this appointment. I am sorry you had such a lousy trip
back up to VT. That's it for now! Thank goodness that storm missed us, we were
pretty worried for awhile. Dave ----- Original Message ----- From: judith severy
To:
Sent: Monday, September 13, 1999 12:34 AM Subject: severy > Good morning
from the north. David your mother take the treatment > yesterday? and how did
your father make out with his appt. We have been > watching the storm on the
tv and hope that it pass you folks you dont > need it at this time. Talk with
Aline Douglas and they said they might > have to make a fast trip down if it
hits near them. Well David let us > know how things are going Uncle Charles
and Aunt Lorraine > >
From: LIBERTY
To: Jeff
Subject: Rita Date: Sunday, September 12, 1999 8:43 AM Hi Jeff How are you
doing? Things are somewhat better here than a few weeks ago. Mom is much
stronger and feels 100% better. But she has not had another dose of Chemo for
about 5 or 6 weeks. She is walking with aid and it appears that her fractures
are healing. The x-rays didn't show the fractures, but the bone scan did. She is
suppose to go for another Chemo tomorrow. She is dreading it, so am I. She seems
more like her old self. I can't stand Gandhi, I am not going to have anything to
do with him. When Mom was going through the ordeal of a few weeks back and she
was in the hospital. He told me he had called in all the specialists, pain
management doctor and bone specialist. These are individuals I believe he should
have called in prior to treatment, not after the fact (Mom's deteriorating
condition) There should have been some sort of consultation for a consensus on
the best possible treatment and how it would effect Mom considering her bone
condition! When I asked Gandhi about further Chemo treatment he stated he did
not think she could get anymore at that time because she could not even stand
up?!!? Now that Mom is feeling better he wants to start the same treatment
regiment as before! I would think the results will be similar. Mom could only
stay in the hospital for a week under the circumstances and he did get her into
a nursing home for rehab (which Medicare would have paid for two weeks). Mom
threw a fit, she was all right when she first got there and we were there with
her, but when we went home it was about an hour when we started getting calls
with her being extremely distraught. She only spent one night there. Dad went
and picked her up the next morning. Aunt Lorraine, Aunt Lorenza and Uncle
Charles went back on Sept. 9. Mom was glad to see them. I led them to and from
the airport. Uncle Charles said he would have never found their way. Well, guess
that's the lowdown for now. Hope things are well on the farm! Dave Please check
out our all in one, ONE-STOP ONLINE SHOPPING EXPERIENCE, INCLUDING CHAT PAGES
AND MORE! http://northernexposurerevisited.virtualave.net/ Call our new toll
free voice mail number: 1-888-392-4832 Extension: 335-483-7437 which spells
deliveries! There is also the option to fax us via this number, listen to the
directions.
Ocala Oncology July 15, 1999
Drs. Wright, Cartwright & Reynolds
My mother, Rita Gregory, is scheduled to have a catheter implanted tomorrow
(7/16/99) at Citrus Memorial Hospital. She is 77 years old and has Osteogenesis
Imperfecta. Her Chemo is scheduled to begin on the 19th (Monday). She has been
diagnosed with non-Hodgins, aggressive lymphoma.
I am concerned with how Chemo will effect her precondition of Osteogenesis
Imperfecta? Also, I would like to know how fast this disease would work? She
bruises and cuts very easily, and this is of concern to me also.
If you could schedule an appointment for her as soon as possible it would be
greatly appreciated.
My phone number is 352-628-6762 David Gregory
My Mother’s number is 352-628-2213 Rita Gregory
Please call us asap!
Thank You
The fax number for Cancer & Blood Disease Center, in Lecanto is
352-746-6333.
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