23 replies to this topic

[MarieC]

Hello, Dx with CML Aug 15, 2013 was taking Gleevec for 5 weeks, when the bloating got a little to much and had appt. with Nurse Practitioner she suggested Furosemide (lasik) 20mg for 5 days only.  Took first day urinated very well, took pill 2nd day, no urination but drink a lot of water. then the burning started in my private vaginal area, and in the rectum area.  I am embarrassed to even write about this in a public forum, but when this happened, I got appt. with my Oncologist, and he did not think it was from the Gleevec or the furosemide.  He decided to take me off Gleevec for 2 wks until I get this problem squared away. Went to a Gyn. got a cream, the burning has eased up, but extremely red. The Gyno called a Urologist to see me, a couple days later,  and he said the redness is not that bad, but continue to use the cream.  Come back in 2 weeks, and if still burning will take a biopsy.  Am I as a leukemia patient allowed a biopsy in this area?   Won't it take very long to heal?  And is it safe?  I don't really want this done, but asking all the women on this forum, if they had or know of someone that has had this burning problem, I would like some advice on what to do.  It, is uncomfortable to sleep, or sit and don't know what it is from?  What happens when I am back on Gleevec, will the side effects that I had and my body still.did not get used to it begin all over again?   I am so upset about this,  .I don't know where to turn to get relief in this private area. Was this acid that the furosemide released from my body and burned and irritated my tissues? All my tests for Urine Specimen are normal, my bladder ultra sound is normal, my kidneys seem normal, but will see a kidney specialist this coming week. Please forgive me for this posting about personal stuff, but need advice and help.

Thank you.

[Susan61]

Hi Marie:  It sounds like some type of acidic process going on.  You saw the gynecologist, maybe you should see a Urologist. See what the kidney specialist tells you this week.  I have not heard of anyone with this complaint from Gleevec, and it might have nothing to do with the Gleevec.  Sometimes we develop things right after taking a new medication, so we feel that is what caused it.  You could have something entirely different going on.

You can ask anything you want, because these TKI drugs cause a multitude of side effects for some.  You might still get a answer from another member.  I wish you well on finding out what is wrong.

[mariebow]

Marie, you never mind about posting this, we are here to help one another.  Hope you get some advice and hope things are better with you soon, I am not on Gleevac but I am taking tasigna.

[GerryL]

You could also try a different diuretic, if the symptoms seemed to appear when you started taking the Furosemide - I take Moduretic.

[MarieC]

Thank you Susan 61, I will see the Kidney specialist on Oct 2, and see what she says. Marie Bow, thank you for making me feel a little better about posting personal info. When you are desperate, and hurting you just have to speak out. 

GerryL, do you take Moderetic all the time or only when you feel bloated?  Thank you.

Does anyone have the answer about the side effects starting all over again when you go back on gleevec after a layoff of 2 weeks?   I never got to the point where I could say, the side effects are over with. I was still so sick and some people say it takes at least 2 months or more to feel yourself again, is this right?

I am off this Gleevec for 5 days so far, and I still have the effects like I am still taking the pill.  How long does this gleevec stay in the body before you can say it is out until I start the pill  up again?  

does anyone know?  Thank you

[MarieC]

Gerry L, do you take moduretic every day, or only when you think you are bloated and need it.

Furosemide is a potent pill, but the NP gave me the least dosage, she said, and unless that water pill took out a lot of acid fluid, then the next question is what pill am I taking beside Gleevec that is making this much acid.

Granted, I am unusual in my urination, I do not drink a liquid and then 25 min later go, it takes me about 3 hrs to release what I drank, and I mainly go to urinate in the evenings every 2 or 3 hrs, I wake up and go.  The Urologist said some people have an overactive bladder, I don't and since I have always been like this, I never noticed until starting to take this Gleevec pill and to drink a lot of water, but not going often.  According to the Urologist it is the Pituitary (sp) gland that tells the kidneys  when to release the water. Mine seems to be at nite.  So, when I go back on this Gleevec, and have to drink a lot of water, I will have to drink at least 2 cups of water for the first hour or so in order to release that water around 3 hrs later.  This is time consuming, and nothing I take has ever been easy anyway!

Thanks for listening.

MarieC

[Susan61]

Hi Marie:  I hope you get some results, but I have to say that I do not drink enough water with my Gleevec.  I have chronic kidney disease, and I think its because I do not get enough water in me.  I do have a overactive bladder, and I am constantly urinating.  Sometimes I get a strong urge to urinate, but then when I get there I hardly go.

I am up most of the night urinating, and get very little sleep.  I keep saying I wil force myself to get the liquid in me, but it does not happen.  I am never thirsty.  To drink water for me is like taking medicine.  I do not like water. I am a coffee drinker, especially in the morning.  Then I am in a out of the bathroom for hours.  If I have to go out somewhere, I cut back on my liquids so as not to be looking for a Ladies Room every10 minutes.

No matter what is going on, please try to get your liquids in everyday to protect your kidneys.

Susan

[hannibellemo]

MarieC,

I am so sorry you are having all this trouble. I would really question if it is the Gleevec, however. I searched for side effects of Lasix on drugs. com and I was pretty amazed at the list! You should take a look.

Also, who told you you need to drink a lot of water with Gleevec? That is simply not true. In fact, for the people who have diarrhea as a side effect of Gleevec drinking too much water can make that much worse. You don't need to drink any more water with Gleevec than normal - unless you have been told to drink a lot of water because of a different problem.

I've copied a link to an earlier thread for you. It should do two things, 1. reassure you that you are not the first, nor will you be the last, to post extremely personal issues, and 2. reassure you about not drinking a ton of water, oh, and 3. make you laugh - very important! However, this person was complaining of acidic feces so maybe it is the Gleevec!

http://community.lls...age/95282#95282

I would, however, make sure to take the Gleevec with food and never on an empty stomach!

Good luck!

Pat

Message was edited by: Pat Otto

[MarieC]

Susan 61, yes, I am one of those people who does not like water either. I drink 2 cup of green tea in the morning, (included in the water amount) then I measure 8 -8oz pitcher full of water, and try to drink that for the whole day.  The most I can swallow is 5 cups, then I still do not urinate all that out during the day.  It comes out during the nite all nite.  There definitely is something wrong, I do not get much sleep either. Just not to get to dehydrated, when I come back from the Bath Rm. I drink some more water because I feel thirsty. Lord, I do not need this other problem, I can just about cope with the CML.

This feels like an acid problem, and I did go to the webpage Hannibellemo mentioned, and my goodness, the side effects from furosemide (lasik) is unreal.

I noticed that ompremazole is acidic, and that is Prilosec, and I take Prilosec everyday, the dr. said it was ok to take for one of the side effects of Gleevec- indigestion.  The last blood test I had said my creatine was high it was1.17 and the ratio is0.50-0.90 my BUN was 11 and the ratio is 6-21 so the BUN is good but the Creatine is a little high.  Haven't the foggiest idea what it all means.  I will have to ask.

To all the woman on this forum may I say this.  I am 78 yrs old, when I was going through menopause around 52 to 55 yrs of age I got this terrible burning in the private area. It was 2 yrs before I got a dx and medicine that helped me, went to every Gynocologist in NJ. had sit baths, creams this and that, finally went to a teaching Gynoc. Dr. at St. Peters Hospital in New Brunswick NJ, who diagnosed it as Vulvo Dynia. Never heard of it, but he said many woman are to embarrassed to go to the Drs. and suffer with it.  It is the lessening of your hormones as you age, and it effects the tissues in a womans private area.  No matter what the other Gynoc. gave me estrogen this and that, he prescribed an estrogen (there were many estrogens on the market back in those days  1987 -1988 He hit on the right one, and within a week that 2 yr long burning was gone. I do not remember the name of that estrogen.  I told my oncol. this and he said at my age my hormones are really gone, but suggested a estrogen cream, that I tried, but the burning is worse when used, so that is not my problem this time. I just pray that a solution is soon found, and believe me I will announce it from the roof tops.

Thanks for listening.

PS:I certainly am letting it all hang out there aren't I!

[MarieC]

Hi Hannibellimo, thanks for the link read it through and  did not know about a lot of water, and got a few chuckles out of me too, since I am kinda of depressed. Yes, the side effects of Lasik are terrible, especially if you happen to be one of the affected people. Yes Acid feces was a thought too, because that is one of the areas effected on me.

Thanks for all the info you offered, and will try to see what happens with normal amounts of water.  I do take the gleevec with food, I was definitely told that, and they also  said take a lot of water too, so there are different schools of thought on this. Will test it out

Thank you Hannibellimo

MarieC

[GerryL]

Hi Marie,

I only take the Moduretic when I feel bloated or that my blood pressure has gone up due to the fluid retention. But I guess the question for you is did your doctor presribe the Lasix for the fluid retention caused by the Gleevec or for your other issues?

I take my Gleevec in the morning with food and usually a half glass of flavoured green tea, orange juice or ginger cordial, whatever is on hand. I don't suffer from acid reflux, but get the occasional bout of nausea and use either Maxalon or ginger lollies.

[Susan61]

HI Marie:  I use Nexium for my GERD issue.  Just glad your going to the kidney doctor to check things out there.

So many things that we take to cure something can cause other issues.

I am from NJ, and I delivered my daughter at St. Peters Hospital in New Brunswick.    There are a lot of good doctors by you.  When first diagnosed with CML, I went to the Cancer Institute in New Brunswick when I was trying to figure out what to do for a second opinion.

     I live down the shore now for the past 41 years.

    I am sure they will get to the bottom of all this.

Susan

[MarieC]

Susan61, glad to hear you are in NJ, unfortunately I moved out of NJ 3 yrs ago to the next state south of NJ.  I had Drs. surrounding me in NJ and never at a loss for a Dr. Here in this state I am 30 miles away from any institute or Drs. and simply hate it here. My sons live here, and I thought it was time to move.. Wish I were back in NJ.  I don't have good vibes here.

I found out something last nite. during the nite I urinated and the burning in my tissues were so bad.  Then it occurred to me that the Gleevec the Dr.told me to stop taking for 2 weeks  until this burning issue is resolved is the result of the toxins and poisons that the Gleevec is doing to the body.  The Nurse Practitioner suggested Furosemide (lasik) for 5 days for the bloating, and when took it first day, water came pouring out, next day took pill again, that is when the burning in the private area started.  The toxins in the body are still coming out and the urine is burning the raw tissues in the private area, because after I urinated last nite, the burning was in my lower bladder area and private area.  It went away about 15 min later, but this morning again upon urinating the burning was there.  How can I heal the tissues if I have to keep urinating.  I spritz the area with water, but the tissues are still burning.  The Kidney specialist I hope has an answer for me, but I think it is from the Gleevec pill for the 5 weeks I took that pill. It kills the cancer cells in the body, and it is now coming out  of the body as acid.   Right now, I don't want to start taking it again, not if I have to suffer with this private area, and the side effects that will start over again.  Don't know which way to turn right now.   That Lasik water pill did something to me now I am suffering and here in Delaware. the Drs. are not as good as in NJ. that water pill was not supposed to do this ? It is just supposed to take out execess water.  Urine is amonia and acidic by itself I think.  This does not sound right to me.   Even my Rectum opening is burning, so this is acid from inside the body, what else can it be?  Don't want to live like this, I cannot take pain, and my sons can only help so much, right now this is taking a toll on the whole family, and it hurts me to see it. Don't know where to turn. Sorry, to complain.  Will talk to the kidney specialist and the Oncologist on Oct 9th and then decide what to do.  Is it worth living like this when every day something else is hurting?  Right now I say No.

MarieC

[MarieC]

Gerry L, the cancer Nurse Practitioner suggested the furosemide (lasik) at a low dose, and that is what started this burning.It was because I was bloated, and she suggested this lasik pill, It unleased something very bad in my body and now I am suffering for it.   In order to heal this burning, I would have to self catherize to stop the urine from hitting the raw areas. I don't know how ? I do spritz myself after urinating, and put on the cream 2 times a day morning and nite, but I don't know if this is a good thing or not, but I don't uninate much during the day, only at nite, and that is why last nite it finally hit me that this still is the poisons and chemo that is still coming out of my body.  What else can it be?   Here in this state the drs are so few that you have to wait a month for a visit.  I will see what the Kidney Drs. says this Wed.  Maybe she can help, if not, I don't think I want to restart this Gleevec pill again, I am old and do not want anymore pain, I had enough, my mind and body are so nervous and anxious, that I shake and tremble no matter what I do.  Don't like living like this.

Thanks for listening and advice.

[Susan61]

Hang In There Marie, until they figure out what the problem is.  We sometimes go through a lot of pain with different problems.  As far as the Gleevec. I have had CML since 1998, and for me the Gleevec has been a life saver.  I will not say that it has not caused other issues for me, but I do not think I would be here now if it were not for getting on the Gleevec.  ALso, when I went on Gleevec that is all that was available.  Now there are other TKI drugs for those who cannot tolerate the one they are on.

Take one day at a time, and see what the outcome is on Oct. 9th.  I had a very bad reaction to Lasix one time, and ended up at the ER.  It was given to me for my blood pressure, and I thought I was having a heart attack.

I would not take a water pill, until I got checked further.  Thats just my opinion.

A good friend of mine is planning on retiring in Delaware.  She said there are some beautiful areas there, and no tax on what you buy.  Her daughter is there already.  You will be fine when they figure this out.

Susan

[LLawrence]

OK, I don't have much experience with this, but do have LOTS of experience with bad diaper rashes in infants (long story).  So.....take this advice for what it is, extrapolation from diaper rash.  You sound miserable, so while you wait on your health care crowd to figure out the cause, here are some things to try to help the symptoms:

1.  Soak in a warm bath with baking soda... as often as needed.

2. After each visit to the toilet, rinse well with warm water, pat the area dry, apply maalox or mylanta with a cotton ball to the burning areas.  Let this dry, then apply a thick layer of aquaphor ointment (find in the skin care section of the drug store).

3. Make sure you are using unscented skin care products on your genitals.  Fragrance and raw skin don't mix well.

4. Drink lots of water.  The more concentrated your urine, the more ammonia and burning.  Minimize acidic beverages (orange juice, soft drinks).

5. Lots of air to the region.  Sleep with loose pjs or long nightie but no panties until this settles down.

I hope it helps, it sounds terribly painful.

Leesa

[mariebow]

I am storing this info in my files this is good information.

[MarieC]

Leesa, thank you so much for the information. I will test this out, but can you give me a name of the aquophor that you mentioned?  Im in the United States, can you name a brand name that I can pick up in the drug store?   I looked up Aquophor and there are so many brands to choose from one of them is Aveeno, which I have, but the ingredients state alcohol in it! Don't want that. Please if you could give me a name you used for diaper rash.   I have Balmex  that is used for diaper rash, and I remember Desitin, from using on my children when babies.  Thanks you so much.

MarieC

[LLawrence]

Marie,

In the US it is called "aquaphor healing ointment" and comes in a tube or jar.  It is a product with the consistency of vasaline, but has some other stuff that makes it great for dry or chapped skin.  It makes a good barrier over the skin to keep the urine from burning.  I really hope some of this helps until you can find the cause of the problem.

Leesa

[AnnieIL]

Hi MarieC,  TKIs are very hard on your mucous membranes and I am speaking from experience. I ended up going to a dermatologist and was given Triamcinolone acetonide ointment and protopic. You really need a prescription to settle down the tender membranes. Call your oncologist or dermatologist. Best of luck, Annie