8 replies to this topic

[dawnhan]

Hello.  I wrote 2 months ago about my mouth problems that started 12/10 with bleeding and no healing at one corner or the mouth and then to mouth pain, swelling and then difficultly with food.  I switched my hematologist and reduced my Gleevec from 400 to 300 mg per day in late January.  A month later the pain and swelling all went away, but my mouth is still sensitive to food and temperature.  My dermatologist confirmed that this problem is due to my low WBC (had been between below 2.0 since I started on Gleevec 7/10 and went up to 2.4 in 1/11) and weakened immune system.  My hematologist had me stay off Gleevec since 2/25.  My mount is still sensitive (the WBC is probably still low).

My question is: how long can a CML patient stay off her medication without risking long-term effects?  I'm reluctant to go back on Gleevec or start a new drug because I'm still weak and I've been through too much with Gleevec to want to try another drug.

Any suggestion will help.

Thank you.

[valiantchong]

Hi,

Base from other forum read, there are patient who are off for 5  weeks, and monitored WBC closely. I think you do not be too worry on stop and re-start of TKIs under specialist monitoring.

I am taking 400 mg after taking it for about 2 months, had similar issue with my tooth sensitive to temperature and very painfull for 1 month. Somehow it went away after my WBC goes up to about 2.8. Just hang on, I believe it will past.

Actually Dr will not recommend to stop unless ANC < 0.5. For new medication, may be could try Sprycell or Tasigna, which has less side effect.

You can refer to Micheal on his experience of Stop and restart Sp

[Trey]

There is no single right answer for everyone, since it depends on how well the person has responded to drug therapy.  For those in CCyR or better, it can be measured in weeks.  But drug breaks are not advisable unless they are "necessary" (which can be defined in many ways).

[scuba]

I have been off all drugs for 5 weeks now.  My WBC counts are slowly rising.  I experienced the same as you when my WBC's went too low.

As far as how long can you stay off Gleevec - it depends on where your counts are relative to your PCR/FISH levels.  WBC's alone do not tell you anything about your cancer state.  But you can make inferences.  It's a good idea to resume therapy when your WBC's (Neutrophils) get above 1.0.  Usually Oncologists would not want you to leave therapy at all and instead give you stimulant shots to boost your WBC production (Neutrophils) (or red blood, etc.).  This was very prevalent for Gleevec taking patients.  Dr. Cortes, my CML specialist, believes that since Sprycel works much faster and deeper than Gleevec (I believe he feels the same way about Tasigna) it allows him "time" to attack the CML without stim shots.  In other words, I can be off Sprycel for as long as it takes for my counts to recover and then when I resume Sprycel, the CML is reduced dramatically in a short time.  Gleevec would not do that for me.  It would take months of Gleevec to reduce cancer and when I went off Gleevec, my cancer bounced back pretty quick.  Sprycel is a whole different animal.  What took 4 months on Gleevec, I achieved in two weeks and what took 2 weeks without Gleevec (count recovery), is taking more than 5 weeks post Sprycel.  I believe that post-Gleevec my cancer cells were growing back.  Post Sprycel, I am having normal cells growing back.  Just a guess since I have to have FISH/PCR done to know for sure.  But the pattern gives me confidence that my guess is right

On a separate note - I would recommend to anyone that they get off Gleevec and switch to the newer drugs.  Why mess around.  Hit the cancer hard.  Side affects notwithstanding.

Hope this helps.

Regards,

Ramses II

[Tedsey]

Dear dawnhan,

By all means, I am not the most experienced or knowledgeable person here.  I am just a fellow CMLer who suffers from low counts and now chronic mouth sores.

Please read Trey's blog  http://treyscml.blogspot.com/ and http://community.lls...mpiled-postings.

There seems to be a couple things done for myelosuppression:

1) The most traditional approach is to stop drug treatment until the WBC become higher, then start the TKI again.

There does not appear to be any standard as to how high the WBC should be before starting the drug again (this varies among oncs, each onc has their comfort level).  And there is no standard as to how low it should go before intervening (this also varies among oncs).  I have had two different oncs handle my myelosuppression differently. 

2) Stay on the TKI and give a person WBC stimulation shots to increase WBC, namely the neutrophils.  Neutrophils are a kind of WBC that help a person fight bacteria (the mouth is a bacteria haven) .  These WBC stimulation drugs are called G-CSF (granulocyte colony stimulation factor--band names commonly used are Neupogen and Neulasta).  Granulocytes are made up of three kinds of WBC, the neutrophils, basophils and the eosinophils.  It gets a little confusing because neutrophils are sometimes referred to as granulocytes, but they are really just part of the granulocyte family (neutrphils, basophils and eosinophils).  See this chart to get an idea of the blood cell lineages http://en.wikipedia....ell_lineage.jpg .

The issue with going off the drug too much and for too long is that it might give the leukemic cells an advantage to proliferate and maybe mutate (and render the TKI useless against them).  The issue with shots, is that they might stimulate the leukemic cells, making the disease worse.  It is really an unknown what happens.  However, there are some pretty good guesses out there.  Neither seems to be better than the other, from the information I am privy to.  So, it is the call of your onc.

Now, if it is just your total WBC that are low and not your neutrophils, your onc may do nothing.  Most oncs will take you off the TKI if your absolute neutrophil count is too low (again, this is variable by onc, but usually lower than 1.0---here is a chart I like, also from wikipedia http://en.wikipedia....eutrophil_count, but your doctor's lab also has its own standard which may be different from this chart).  Sometimes patients will be taken off the TKI because of severe side-effects, but I think most oncs like to have patients stay on the drug if the neutrophils are good and the WBC counts, although low, are stable.

This is just a basic explanation and all from my experenice.  I am welcome to anyone adding anything or correcting me if I goofed up anywhere.  It is a complex subject I am just beginning to understand.

My counts have been more or less like this for the past year (I was dx Nov. 2009):  WBC 1.2-1.9, ANC .5-1.0, PLT 20-30,000.  So, low counts can be a new normal.  From what I have learned ANC below .5 is "dangerous", but some people never get sick.  And PLT 50,000 and below could cause a person to bleed internally (my last onc freaked out at 80K).  Some people do not bleed even at low levels (like me), some bleed at higher levels.  Everyone is different and has his or her own bleeding threshold.

Hope this was helpful.  Hope your mouth sores go away (mine last over a month sometimes; the huge crater, that is now finally healing, has left the tip of my tongue numb).  I use "Kanka" to numb the sores and seal them and "Canker Cover" to patch the really big ones (over-the-counter at drugstore).  That is the best that I have found.  Been to a couple of dentists, there is not much they can do except burn them with silver nitrate (to make a scab).  But a person cannot run constantly to the dentist to do this, especially if at risk for bleeding.  But learning to live with the sores is better than not living with the sores.  Sorry if that sounds terrible.  I found you gotta weigh your pains in life.  Getting CML is a huge one.  Canker sores are extremely painful and can make your life miserable, but small in comparison.  There are moments of relief.  Nevertheless, I feel your pain.   Wish I could be a better help.

All the best to you!

Tedsey

P.S. Not to make this even longer, but mouth sores may also be tied to anemia.  If you are anemic, that could also add fuel to the fire.

[scuba]

Hi Tedsey,

Regarding the mouth sores.  I strongly recommend you stop all use of mouthwashes that have alcohol and toothpastes that have Sodium Laural Sulphate.  These ingredients aggravate mouth sores a great deal.  Use instead "Biotene" toothpaste and mouthwash.  Biotene is very effective at increasing mouth saliva naturally (mild gland stimulant).  In the evening, rinse your mouth after Biotene with a warm salt water rinse.  Together this healed my mouth sores within days.  And they have not returned.  My ANC is around 0.5-0.6.  The above regimen keeps the bacteria colony low so the few Neutrophils we have can do the job.

[dawnhan]

Thank you all for your input.  I cannot say enough how the support and information that I've received from this board over the past 2+ months has helped me. 

What got me out of the most miserable stage of my mouth sore was the Magic Mouthwash, which is a mixture of 3 or 4 ingredients prescribed by a doctor that temporarily numbs and relieves the lining pain inside the mouth.  I'd let it stay in my mouth for a good 5-10 minutes and my mouth would feel no pain for at least 20 minutes afterwards.  I'd repeat the process whenever the pain was becoming unbearable. 

For me, it was really hard to think far into the future when the present pain was totally consuming me.  I wanted to stop taking Gleevec altogether and just deal with my CML as it'd take its course.  There was no quality of life and I could not see how my conditions could improve when my body just reacted so adversely since I started on Gleevec.  At a few points my husband also gave in to the idea that it's better to live with the CML then dealing with what Gleevec has done to me.  That's why I now fear going back to the drug or start on either Sprycel or Tasigna.  I'm glad that my current doctor from Georgetown has sensed this and reassured me that life can be better if I just hang on.

I haven't used any toothpaste when I brush my teeth for a while now.  Last week when my mouth pain had gone away I tried my regular toothpaste, but it only lasted 2 seconds when my mouth started to burn.  Thank you, Michael, for the Biotene suggestion.  I will get it soon.

Again, I'm thankful for LLS and this board.

Dawn

[Tedsey]

Thanks Michael!

I actually took your advice a while ago and bought some Biotene.  It is very mild.  The sls irritated my sores.  I tried the salt rinse.  I read about letting zinc tablets melt against the sores.  However, it burns and I was not sure how the zinc would interact with the Sprycel.  I tried DGL (deglycyrrhizinated licorice).  I chewed up a pill and "gargled" with it.  In one study in Britain, it helped about 50-75% of those in the study.  It mostly soothes instead of heals.  But if you like black licorice, it tastes great (however, I was afraid to ingest it because, again, an interaction with Sprycel).  I have been menstruating for a little shy of a month now (onc just tells me to take iron).  So, I wonder if my bleeding is the cause of all this.  I only have a week to a few days a month now where I am not bleeding.  I guess that explains the dizziness.  However, I am doing OK breathing.  I DO NOT want to go through the severe anemia thing again!  I am getting a little scared.  It appears I am on track for real baaaad anemia again after 5 months on a TKI.  That is what happened at 5 months on Gleevec.  Now, 5 months on Sprycel, the same thing is happening.

I am so glad your ANC is rising and that your sores have gone away so quickly.  They can make life so miserable.

All the best,

Tedsey