Help?

[Guest guest]

Thank you ....you are such a blessing. I'm doing much better

this evening but I'd like to try and figure this out anyway in case

it happens again. Two people suggested I might be in a flare.

>

> [Editor's Note: , let's see if we can figure this out. Can

you please respond to the following questions:

> 1. How long on MTX, how long @ current dose, amount of current

dosage.

MTX 12.5 MGS, ONE MONTH ON CURRENT DOSE, THREE MONTHS ON MTX

> 2. List all drugs you take, and dosages. On pain meds, please give

details: what meds, what dosages, how long you've been on that dose,

what other pain meds you have been on, in what doses, with what

results.

MTX 12.5 MGS, MOBIC 7.5 mgs X1P/DAY (X2/DAY IF NEEDED), FOLIC ACID 1

MG, ULTRACET PRN 2 TABS, HYDROCODONE PRN. (birth control pills)

I have responded very well to the mtx. So much so that I barely need

the ultracet and almost never need the hydrocodone (have not needed

it in at least a month). No longer get sick or too foggy from the

mtx. I used to take percocet for the pain, which worked but made me

too loopy so I got off it as soon as I could. Also the hydrocodone

did the job once the mtx kicked in so I no longer needed it and never

asked for any more. I started last night by taking the mobic....did

not touch the pain, then used the ultracet....did not touch the

pain....waited three hours and used the hydrocodone and took

two....did not touch the pain. Then I just sat up and was miserable

for the rest of the night. Waited 4 more hours, which was 8am and

took the hydrocodone again and this time it worked.

> 3. You mention hands & feet. Are there other joints involved? If

so, do they respond to the pain meds?

Mostly hands and feet but I have some sciatica involvement or SI

involvement, not sure which. Either way nothing I have in terms of

meds works for that. I just grin and bear it.

> 4. Anything else you think might be useful to relate?

I can't think of anything but I will say this. I spent three days on

cervigel (sp?) and 8 hours on pitosin (sp?) before my c-section with

my first child and that was a breeze in comparason to the night I had

last night. I don't think I have experienced that kind of pain yet.

>

I have an appt. with my rheummy this Wednesday so that is good, but I

do feel much better tonight. Thank you for this help...as always,

you are attentive and kind. I really appreciate it.

best,

[Editor's Note: Thanks for the kind words. I hope I can be of some service. That

in mind, let's have a go at it:

1. The cervigel (used to soften cervix before potocin admin & delivery) and

pitocin (synth form of oxytocin, used to begin or speed up delivery), while they

may have made you " feel better " while having your baby, are not related to the

current situation.

2. MTX 12.5 mg/wk is a mid-range dose. You've been on that dose for 30 days. You

should just be benefiting from the increase--or will, soon. (Did doc start you @

7.5 or 10?) With MTX, results are tightly dose-related; small increases can make

substantive changes in results. Be sure to follow label directions exactly as

written.

3. Mobic is what it is; another NSAID. A little confession here: I usually try

not to editorialize when offering advice. That's hard for me to do with NSAIDs.

They are, by and large, and taken together, well within the Top 5

pharmaceuticals foisted on a trusting but largely ignorant American public. (I

feel a little, and I mean just a little,

more charitable towards the newer COX-2 inhibitors, given their more benign

risk-benefit picture.) The benchmark of an NSAID's efficacy is, " Does it equal,

in analgesic efficacy, 650 mg. of aspirin (or Tylenol)? " That's a pretty low

thresh-hold, isn't it? All we expect of these enormously expensive NSAIDs

(Vioxx, Celebrex, Indocin, Ansaid, etc.) costing up to perhaps $2--4$ a pill--is

that they work as well as a couple of Bufferin @ 40 cents each? (And, while

we're congratulating ourselves on knowing that little tidbit, we should also be

aware that Bufferin's aspirin is the same as Walgreen's, Rite Aid's, or

Safeway's generic 500-count Aspirin--for less than a penny each......OK, I'll

get down off the soapbox.

4. So, in reality, you're taking three meds for pain: Mobic, Ultracet and

hydrocodone (you didn't give strength/amount), only two of which this doc has

given you?

5. It does sound like a flare. Let's hope it's going to a short one.

6. Sounded like Hydrocodone--not a surprise--did the best, although you had to

take a second tab. Will your doc support you through this flare with, say, Norco

(10 mg. Hydocodone/325 mg. Acetaminophen) every 4-6 hrs, going to 15 mg. a week

on methotrexate?

7. I'm very (personally) familiar with SI joint involvement. It can be an

incredible pain in the--uhh, rear end (both sides). I have too many joints

involved for site injections of cortisone to be practical, but if you don't,

it'd be a way to go. They do SI joints while you're being fluoroscoped, for

accuracy, so it's a bit more of as procedure than ankles, hips, etc. (I wish my

swivel-chair didn't squeek so much; I have to constantly fidget, to stay out of

real pain.)

8. Anyway, I hope something above is useful.

Take care.

D.]

[Guest guest]

In a message dated 11/10/2003 3:19:55 AM Eastern Standard Time,

CARBEN1@... writes:

> . I'm very (personally) familiar with SI joint involvement. It can be an

> incredible pain in the--uhh, rear end (both sides).

I have a question because recently besides my usual lower back pain, I get

quite painful bouts in the rear end. It is excruciating and feels as if (this

sounds gross) I may need to have a bowel movement only I don't. I was out in

a store and it occurred and I practically started crying that it was so

painful. I ended taking Advil, which I had with me and the pain eventually

subsided. I get this in bed sometimes and it wakes me out of a sound sleep. I

am

thinking it has something to do with the SI joint. Does anyone have this

problem?

Janet

[Guest guest]

I can only think of a few off the top of my head:

TRT: Testosterone Replacement Therapy

HRT: Hormone Replacement Therapy

AG: Androgel

E2: Symbol for estradiol

ED: Erectile Dysfunction

T: Testosterone

HCG: Human chorionic gonadotropin

I am sure there are many more...but that's all I can come up with for

now.

Welcome to the boards.

> Is there an index to abbreviations and acronyms used in this forum?

> I'm new here and cannot understand a lot of the messages.

> Thanks.

[Guest guest]

Gretchy, I wish I knew what to say other than what I've already said. When I was recovering from my hysterectomy all those years ago, I used to get the same scared, achy feelings. Please go see your doctor, maybe there is someone your loved ones and yourself could go and see together so that they can help you through this. Your loved ones aren't medical professionals so please remember, this is really hard on them too. It would help them to learn how to be supportive and for all of you to manage this stress together. Please band together with them to help get yourself through this. There is light at the end of the tunnel. I haven't been explanted yet but what you are describing sounds exactly like my cancer surgery (hysterectomy). Sending love & hope, Tracifoxygretchy <gretchenc@...> wrote: I am feeling 10x worse. I wake up shaking (well i dont really sleep) -but I wake up shaking and scared every day. Did you all have very badjoint pain? I can barely move my arm, my back and calves are aching,and my arm had the dullest pain yesterday I couldnt stand it. I onlyhad tingling hands and now my whole body hurts in waves. I couldbarely move my arm last night, my calves ache, and my whole bodytingles and feels numb. I dont think I should be getting this muchworse? My memory loss is bad and when I look at my loved ones theylook like aliens I

am so foggy.

We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Gretchen,

Yes, joint pain is part of this package for some women. All of the things you've written are things we've heard over and over again.

It sounds to me like your immune system is just not settling down yet...it is going to take some time as we've mentioned.

There isn't much we can do for you, other than to tell you what we've experienced and how we got better. This is going to be a healing process and you are going to have to work through it, using the medical assistance you choose and are most comfortable with.

We each have to blaze our own trail of healing, unfortunately, but we've had many successes and can help point the way!

Read as much as you can to find out what has worked for our other women and then get the medical help you want to use through whatever channels you find necessary.

Patty

Help?

I am feeling 10x worse. I wake up shaking (well i dont really sleep) -but I wake up shaking and scared every day. Did you all have very badjoint pain? I can barely move my arm, my back and calves are aching,and my arm had the dullest pain yesterday I couldnt stand it. I onlyhad tingling hands and now my whole body hurts in waves. I couldbarely move my arm last night, my calves ache, and my whole bodytingles and feels numb. I dont think I should be getting this muchworse? My memory loss is bad and when I look at my loved ones theylook like aliens I am so foggy.

Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

[Guest guest]

http://www.gazorpa.com will give you some information and files to share with your doc

[low dose naltrexone] Help?

I just stumbled on this information and i feel it might help me...i was diagonsed with MS about four years ago...and am just now going through a flare up...I have no health insurance and right now am just on predeisone...but want to tell me doctor about this drug and hopefully she will prescribe it to me...I live in VA and guess I just need some help in what to say to her and how to proceeed. Right now i can hardly walk and every muscle is weak...my hands anre numbe and I feel ill all the time.

[Guest guest]

Hi Meghann;

This is your lucky day. Naltrexone actually helps most MS patients, some quite a lot - like my son. I really believe in it. I will forward a "welcome" email to you. Read the info and if you need someone on this site can direct you to a doctor in your area that is likely to prescribe LDN for you.

When approaching my son's GP we said " Naltrexone won't hurt him and just might help". The GP agreed.

Really, things will get better now.

Luigi

[low dose naltrexone] Help?

I just stumbled on this information and i feel it might help me...i was diagonsed with MS about four years ago...and am just now going through a flare up...I have no health insurance and right now am just on predeisone...but want to tell me doctor about this drug and hopefully she will prescribe it to me...I live in VA and guess I just need some help in what to say to her and how to proceeed. Right now i can hardly walk and every muscle is weak...my hands anre numbe and I feel ill all the time.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.446 / Virus Database: 268.18.7/710 - Release Date: 3/4/2007 1:58 PM

[Guest guest]

Hi everyone!! Not new to the group but haven't written anything in a

while. A few questions and concerns. What and when does a patient

with CML get PCR's done. I was dx in May of 07 and have yet to get a

log reduction number. I see my doctor every month and have blood

test done every time. My counts are great and having minor side

effects. I know that in December I will be getting a bone marrow

biospy for the second time. Is that what you guys mean about getting

a pcr log reduction. Confused and lost?? If anyone could explain that

would be great.

This next one is for the ladies! Does anyone have or had

problems with their menstrual cycles. From not getting it to not

being regular. Before dx, I wasn't getting one ( which resulted in

finding out I had cancer) but then after taking meds I started my

cycle agian. Now, I am back to not getting one and I get a lot of hot

flashes( 28 yrs. old and not PG) Wondering if anyone else has or had

problems like this. Any help or advise will be greatly appreciated.

Thanks!

Corina

dx 05/07

Gleevec 400mg

Texas,

Cancer Care Centers of South Texas

[Guest guest]

Hi Corina,

Zavie gave you an excellent summary of the tests that are used to

track your progress. Just to recap though, the PCR test isn't very

accurate or useful to use before the patient has reached CCR so this

is probably why you haven't had one yet. When you do reach CCR

(you'll know this the next time you have a BMB), you'll probably

start to get PCR's done and the recommended schedule is to have them

every 3 months. They do PCR's with peripheral blood so it's not a

big deal to have them done so often.

As for your other question. YES! Lots of women have complained

about hormonal issues over the years. Some have seen their cycles

change, others have seen their cycles stop entirely, and some have

seen their flow increase dramatically.

There is little information on the internet about this but

anecdotally, I've seen way too many women complain about this issue

to ignore that Gleevec really does cause hormonal changes. For me,

I've had my prolactin shoot up to levels that are 3 times higher than

normal and no reason was ever found to cause this so I can't help but

blame Gleevec and I'm convinced that this is a much bigger issue than

anyone knows because prolactin isn't something that most people get

checked.

I also get a lot of hot flashes and they really increase in number a

few days before I'm due for " my monthly visit " . I was diagnosed at

31 and I'm 37 now so I don't believe that my hormonal issues are at

all age related either.

I guess it's a small price to pay for being alive but I do wish that

they would research this issue more closely to know if we should be

on the look out for anything specific such as an increased risk of

gynecological cancers etc. Interestingly, they have studied men and

found that low testosterone has been a problem for them but I've

never found any studies that looked at women's hormones.

Take care,

Tracey

--- In , " cori_escontrias " <cori_escontrias@...>

wrote:

>

> Hi everyone!! Not new to the group but haven't written anything in

a

> while. A few questions and concerns. What and when does a patient

> with CML get PCR's done. I was dx in May of 07 and have yet to get

a

> log reduction number. I see my doctor every month and have blood

> test done every time. My counts are great and having minor side

> effects. I know that in December I will be getting a bone marrow

> biospy for the second time. Is that what you guys mean about

getting

> a pcr log reduction. Confused and lost?? If anyone could explain

that

> would be great.

> This next one is for the ladies! Does anyone have or had

> problems with their menstrual cycles. From not getting it to not

> being regular. Before dx, I wasn't getting one ( which resulted in

> finding out I had cancer) but then after taking meds I started my

> cycle agian. Now, I am back to not getting one and I get a lot of

hot

> flashes( 28 yrs. old and not PG) Wondering if anyone else has or

had

> problems like this. Any help or advise will be greatly

appreciated.

> Thanks!

> Corina

> dx 05/07

> Gleevec 400mg

> Texas,

> Cancer Care Centers of South Texas

>

[Guest guest]

Thanks everybody for all your help! I understand more on the testing results and

hoping to speak with my hematologist on all my exams. Regarding the cycles and

hot flashes. Before being dx I thought I was PG, took exam and got a big NO!

Instead, after all my exams with my gyno the only problem I had was my blood

counts, which resulted in CML dx. Once I started treatment and my counts went

down to 35,000, I got my cycle. Then my counts went down to 1,000 and no cycle.

Now I am increasing, my count this month was 5,000 and still no cycle. I

mentioned to my doctor about this and he asked me to keep a log on the hot

flashes or any side effects, if any. He is telling me that it seems that I am

responding so well to the meds (count wise) that he wants me to continue and we

will see in November what needs to be done. Pretty much also because he says

that their no major study on gleevec and menstrual cycles. He was going to check

up more on that. I just

wish their was. Small price to pay to stay alive- yes it is and I can deal

with not having a cycle; the hot flashes is what so uncomfortable. Anyhow- I

hope to find everyone doing well and thank you again for all your help. Greatly

appreciated!

Thanks,

Corina

Re: [ ] Help?

ciao Corina,

Regarding hormonal issues: I am 35 and was on the pill when dxd last

March. My hemato said that himself, he would stop the pill while on

Gleevec so I did. Of course, when you stop the pill, life changes right

there anyway. The week before my periods now feel like a slow death. And

I have experienced twice important cramps on the day of ovulation. It

seems to get better though. I had asked my hemato what would happen with

my periods and had predicted that pretty much anything could happen,

some stop having periods, others keep being normal, and others have

hemorragy-like periods. Gleevec made no difference for me there, I am

regular, around 25 days cycles and normal flow.

Did you mention the hot flashes to your doctor? are they night sweats? I

believe that this could be a side-effect of Gleevec. I don't know that

just having CML stops periods though. The fact that you had no periods

before Gleevec must have been related to other health issues? I

personally would make sure to get all the answers with a gynecologist.

all my best,

myriam

Myriam (age 35)

Montreal, Quebec

dxd MAR/24/07 (splenomegaly 17cm,WBC:306, PLT:1203)

BMA MAR/28/07 with complications, hematoma (results lost by the lab)

Hydrea 1g MAR/24/07 to APR/23/07 (resistance to Hydrea)

FISH BCR/ABL ES: 95% (on 200 cells) APR/25/07

Gleevec 400mg since APR/26/07

CHR and CBR(spleen) after 3 weeks of Gleevec

FISH BCR/ABL ES: 8% (on 200 cells) JUL/30/07

On Tue, 30 Oct 2007 04:06:15 -0000, " cori_escontrias "

<cori_escontrias> said:

> Hi everyone!! Not new to the group but haven't written anything in a

> while. A few questions and concerns. What and when does a patient

> with CML get PCR's done. I was dx in May of 07 and have yet to get a

> log reduction number. I see my doctor every month and have blood

> test done every time. My counts are great and having minor side

> effects. I know that in December I will be getting a bone marrow

> biospy for the second time. Is that what you guys mean about getting

> a pcr log reduction. Confused and lost?? If anyone could explain that

> would be great.

> This next one is for the ladies! Does anyone have or had

> problems with their menstrual cycles. From not getting it to not

> being regular. Before dx, I wasn't getting one ( which resulted in

> finding out I had cancer) but then after taking meds I started my

> cycle agian. Now, I am back to not getting one and I get a lot of hot

> flashes( 28 yrs. old and not PG) Wondering if anyone else has or had

> problems like this. Any help or advise will be greatly appreciated.

> Thanks!

> Corina

> dx 05/07

> Gleevec 400mg

> Texas,

> Cancer Care Centers of South Texas

>

>

>

>

>

>

[Guest guest]

I was diagnosed at 35 and am now 42. Ever since diagnosis and treatment I

have severe night sweats a week or so prior to my menstrual cycle. I have

had my hormones tested numerous times and the results do not show any signs

of pre-menopause.

None of my doctors have been able to provide an explanation for it or say

whether it is or not unrelated to the Gleevec or Leukemia. However, I have

seen many, many post form women regarding this issue over the years and I do

believe it is related to one of them. Gleevec and or Leukemia. My hormone

test results have actually been at higher levels than expected but not high

enough to concern any of my Dr's.

I recently had cyst on both ovaries that needed to be surgically removed and

if menopause feels anything like my week prior or my week of my menstrual

cycle I'm quite sure I will need some pretty serious drugs to get me through

it.

It is absolutely horrible to say the least.

I really wish that they would look a little closer at this issue for us

females. I am positive they will find that either the gleevec or the

leukemia is affecting our hormones in some way that could cause further harm

down the road.

ez

[Guest guest]

With regard to Monthly Cycles....mine have been HORRID I am now

waiting to have an endometrionic Ablusion (not sure on spelling) My

Gyn recommended it and Dr. Cortes said he agreed as it was the

Gleevec causing it.

Donna--- In , " ez " <lmartinez@...>

wrote:

>

> I was diagnosed at 35 and am now 42. Ever since diagnosis and

treatment I

> have severe night sweats a week or so prior to my menstrual cycle.

I have

> had my hormones tested numerous times and the results do not show

any signs

> of pre-menopause.

>

> None of my doctors have been able to provide an explanation for it

or say

> whether it is or not unrelated to the Gleevec or Leukemia. However,

I have

> seen many, many post form women regarding this issue over the years

and I do

> believe it is related to one of them. Gleevec and or Leukemia. My

hormone

> test results have actually been at higher levels than expected but

not high

> enough to concern any of my Dr's.

>

> I recently had cyst on both ovaries that needed to be surgically

removed and

> if menopause feels anything like my week prior or my week of my

menstrual

> cycle I'm quite sure I will need some pretty serious drugs to get

me through

> it.

>

> It is absolutely horrible to say the least.

>

> I really wish that they would look a little closer at this issue

for us

> females. I am positive they will find that either the gleevec or the

> leukemia is affecting our hormones in some way that could cause

further harm

> down the road.

>

>

>

>

>

> ez

>

>

>

>

>

>

[Guest guest]

I am now on Sprycel and my menstrual cycles are actual normal now....but prior

to that I was on Gleevec and they were horrible. Cramping was worse, irregular

cycles and my ob/gyn also did some testing and I was not in pre-menopause. I

think it has something to do with Gleevec. I have only been on Sprycel for 4

months....so things might change, but so far, so good. I have also seen a lot

of posts about this from women. It would be nice for the dr.'s to look into

this.

B.

donnaberry99 <no_reply > wrote:

With regard to Monthly Cycles....mine have been HORRID I am now

waiting to have an endometrionic Ablusion (not sure on spelling) My

Gyn recommended it and Dr. Cortes said he agreed as it was the

Gleevec causing it.

Donna--- In , " ez " <lmartinez@...>

wrote:

>

> I was diagnosed at 35 and am now 42. Ever since diagnosis and

treatment I

> have severe night sweats a week or so prior to my menstrual cycle.

I have

> had my hormones tested numerous times and the results do not show

any signs

> of pre-menopause.

>

> None of my doctors have been able to provide an explanation for it

or say

> whether it is or not unrelated to the Gleevec or Leukemia. However,

I have

> seen many, many post form women regarding this issue over the years

and I do

> believe it is related to one of them. Gleevec and or Leukemia. My

hormone

> test results have actually been at higher levels than expected but

not high

> enough to concern any of my Dr's.

>

> I recently had cyst on both ovaries that needed to be surgically

removed and

> if menopause feels anything like my week prior or my week of my

menstrual

> cycle I'm quite sure I will need some pretty serious drugs to get

me through

> it.

>

> It is absolutely horrible to say the least.

>

> I really wish that they would look a little closer at this issue

for us

> females. I am positive they will find that either the gleevec or the

> leukemia is affecting our hormones in some way that could cause

further harm

> down the road.

>

>

>

>

>

> ez

>

>

>

>

>

>

[Guest guest]

Thank you for your powerful life and for hapiness. May God blass you all!

jennifer bosse <jenniferabosse@...> wrote: I am now on Sprycel

and my menstrual cycles are actual normal now....but prior to that I was on

Gleevec and they were horrible. Cramping was worse, irregular cycles and my

ob/gyn also did some testing and I was not in pre-menopause. I think it has

something to do with Gleevec. I have only been on Sprycel for 4 months....so

things might change, but so far, so good. I have also seen a lot of posts about

this from women. It would be nice for the dr.'s to look into this.

B.

donnaberry99 <no_reply > wrote:

With regard to Monthly Cycles....mine have been HORRID I am now

waiting to have an endometrionic Ablusion (not sure on spelling) My

Gyn recommended it and Dr. Cortes said he agreed as it was the

Gleevec causing it.

Donna--- In , " ez " <lmartinez@...>

wrote:

>

> I was diagnosed at 35 and am now 42. Ever since diagnosis and

treatment I

> have severe night sweats a week or so prior to my menstrual cycle.

I have

> had my hormones tested numerous times and the results do not show

any signs

> of pre-menopause.

>

> None of my doctors have been able to provide an explanation for it

or say

> whether it is or not unrelated to the Gleevec or Leukemia. However,

I have

> seen many, many post form women regarding this issue over the years

and I do

> believe it is related to one of them. Gleevec and or Leukemia. My

hormone

> test results have actually been at higher levels than expected but

not high

> enough to concern any of my Dr's.

>

> I recently had cyst on both ovaries that needed to be surgically

removed and

> if menopause feels anything like my week prior or my week of my

menstrual

> cycle I'm quite sure I will need some pretty serious drugs to get

me through

> it.

>

> It is absolutely horrible to say the least.

>

> I really wish that they would look a little closer at this issue

for us

> females. I am positive they will find that either the gleevec or the

> leukemia is affecting our hormones in some way that could cause

further harm

> down the road.

>

>

>

>

>

> ez

>

>

>

>

>

>