48 replies to this topic

[GerryL]

Hi Pin

Is there anything else I should know?

Many things can affect LDH results that are not necessarily a cause for concern. For example:

• Strenuous exercise can cause temporary elevations in LDH. 
• Hemolysis of the blood specimen can cause falsely elevated results. This may happen if the specimen is handled roughly, stored in extreme temperatures, or if the sample was difficult to collect. 
• If your platelet count is increased, serum LDH will be artificially high and not reflective of the LDH actually present.

You could always talk to your GP and ask for another blood test.?

[GerryL]

I've got everything crossed for you as well Josie. Remember to keep those stress levels down both for baby making and keeping those leukemia cells at bay.

[GerryL]

Hi Traci,

Congratulations on your results. Doing a happy dance for you, Pin and Josie.

       

[Judy2]

Hi Traci, Pin, Josie,

Congratulations to all three of you, I'm joining in on the dance.

Judy

[Pin]

Good to know Josie - I'm sure it was just the muscles fixing themselves Also, ow ow ow - a root canal? I hope you're feeling better now...

Traci - haha, twins! What a funny coincidence! Congrats on your number too!

Gerry - my doc ordered another test just to rule any liver problems out, so I'll either get it done tomorrow or Monday I think!

Thanks Judy!!

[GerryL]

Let us know what your results are.

[Pin]

Well, I've had my 12 month test - 0.0039. I know it's still good, but flat, which was disappointing.

I am freaking out a bit that my white cell count has dropped to 3.2 (1.75 neuts), and my platelets have dropped to 117. I have no idea why this has happened, I thought that once you hit normal, they stay somewhat normal, so this was a bit of a shock. In addition to that the report also said:

WCC - "reactive lymphocytes noted" - what does this mean, could this be due to a virus? I hope so..

WCC - "mild toxic changes" - I have no idea what this means? This sounds very bad.

RBC - "Target cells: some noted". Or this?

I'm wondering if this could be temporary and due to the new herbs I am on - or if this fluctuation in cell counts and quality is normal after a year?

I'm trying not to let my imagination run away...if anyone knows anything, please help!

Ps. Gerry - I forgot to post an update - my liver was fine, it was just the exercise...

[GerryL]

HI Pin,

First up - good news on the liver.

Reactive lymphocytes are usually associated with viral illnesses and mild toxic changes can also be infection. I think there was an earlier discussion on how the body reacted to a viral infection as opposed to a bacterial infection - one sent the WCC up and the other down. So it could be that you've got a virus. Have you seen your doc yet? I haven't got any of my test results with me at work so can't compare my results.

You might just be plateauing at the moment, I wouldn't get too concerned until your next test - remember it is the trend you need to look at. Perhaps you could organise with your doctor to get another test done in 3 months to see if it changes. Remember you can always increase the dosage (under your doctors directions - though I know you struggle with Gleevec) or after the next test and if it is still the same talk to him/her about switching to Tasigna.

What herbs are you taking at the moment?

[GerryL]

Pin,

I looked up low platelets - "More commonly, a viral infection can interfere with platelet production by the bone marrow."

[Pin]

Oh thank you for replying Gerry! I think maybe you are right, it is probably just due to a virus I didn't know I had, which is a bit disconcerting - maybe people have this happen all the time they just don't know it because they don't have blood tests done so often? I had somewhat swollen lymph nodes in my groin last week, I suppose I could have had a stomach virus/infection? My tummy has been crazy anyway, I wouldn't have noticed if it was even crazier...

I think I am just so sensitive to any changes (and weird notes about reactive something and toxic something else) that I just get nervous that I am doing something wrong, or things are going downhill for me. Plus that and the annoying plateau - Somehow, even though I know this is such a common experience for so many of us, it is still very frustrating and I can't help but feel like I have done something wrong (even though I hope this is probably irrational).

I've been taking some alternative supplements for the last couple of weeks with weird stuff in them like walnut hulls, wormwood and pau d'arco (I checked with the oncology pharmacy about all of the ingredients and they said they should be ok - but that just means a lack of evidence, right?). They are supposed to help my stomach get better as it's been really awful lately - Anyway, I just hope that this hasn't interfered with my response or caused the low counts. I realise it might be a bit of a gamble but the stomach problems have been so debilitating and I only have to take these for another 2 weeks so hopefully if they did have a negative impact, it won't last long.

Thanks again,

Pin.

[Tedsey]

Hurrah Pin!  I am so happy to hear that you achieved such great results!

Hugs,

Tedsey

[Tedsey]

Wow!  Go Traci!  Glad to hear you got such a low number!

Teds

[Tedsey]

Sorry Pin and eveyone!  It seems the dates come up all jumbled on my computer.  Page 3 is not the most current date.  I have to search through posts to find the present date.  Again, congrats! 

[Pin]

Thanks Tedsey! I think that must be my fault -sorry! I updated the name of the thread and it changed the date on me. I should probably just start a new thread

[GerryL]

Hi Pin,

I take a few supplements myself, but for me things that can have an impact on the liver (even in a good way) I avoid. Walnut hulls & wormwood are used to cleanse the liver and pau d'arco appears to be hard on the liver (if taken in large doses) - I would probably not take them. I avoid dandelion tea and milk thistle for this reason. Have a chat with a naturopath re what impact the herbs may have on your liver and also whether the first two could be flushing the Gleevec out of your system a bit quicker. You could ask the naturopath and the pharmacy about Slippery Elm (as it can help with IBS) and if it is okay, you would need to take it well away from the Gleevec as it can stop absorption of medication.

If you can get to PCRU, you might be able to talk to your specialist about a dosage reduction. I've found that I have less nausea and heartburn with the 300mg, though there hasn't been a reduction with muscle/joint pain, fluid retention and fatigue as yet. 

[Sneezy12]

1) There is no scientific evidence published in peer-reviewed jounals that herbs help CML or treatment side-effects in humans.

2) What does a "Naturopath" non-physician know about Gleevec and the treatment of CML? Frank

[GerryL]

HI Frank,

Pin is taking the herbs to try and help with the side effects, not treat the CML. Regarding the naturopath - they should (hopefully) know what impacts the herbs may have on the body. My pharmacist who has worked with Gleevec doesn't like me taking anything which may impact my liver. So my comments aren't related to asking the naturopath about how to treat CML, but what else the herbs could be doing in the body. Pin has checked with the oncology pharmacy and they are not currently aware of any interaction. My query is that even if there is nothing currently documented doesn't mean that there may not be some sort of interaction going on, and I would try and find out as much information as I could before I took anything. Perhaps my earlier comments did not come across that way.

[Pin]

Frank - that is very true. I am well aware of the importance of using evidence-based treatments. However, at this point there is unlikely to be any research funded now or in the future to find out how best to treat the side effects in CML patients, particularly not with using herbal/vitamin supplements - maybe in the future this might become important, especially if no cure is found, but not now. That said - my side effects have become difficult to manage and I am now willing to try out something new that may help with this as my ability to switch TKIs is somewhat limited.

I do realise that I am taking these other supplements at my own risk but given my response to date, that is a risk I believe is somewhat reasonable to take at this point especially as the treatment time with these new herbs/vitamins is also limited to a short period (a month or so). Despite all the assurances from the pharmacy, doctors etc, I also understand that as Gerry says - they might be having other effects directly, or indirectly on my treatment and/or condition. I am not condoning the use of any of these herbal/vitamin supplements for use in anyone else even though I really do hope that they can help me.

[Pin]

Thanks Gerry - I do wonder what effects these things are having - but I hope that the time that I need to use them is limited, so hopefully won't have any long-term problems from using them. Ugh - this is so tricky

[GerryL]

Hi Pin,

With any luck you're just plateauing at the moment - I have my fingers crossed for you that at your next test you'll have moved further along and either be undectable or at that funny stage where I was positive but they couldn't or didn't have a measure for it.

As I mentioned earlier I take a number of supplements, mainly vitamins and minerals, but I also take celery seed which seems to help with the muscle cramps. I know that it works for me as I had reduced my dosage (due to the reduction of Gleevec) and wound up having my fourth toe pointing sideways the other night. I have returned to the recommended dosage. I rarely get muscle cramps anymore. Celery seed is certainly not documented for helping with this, but it works for me and doesn't impact my Gleevec takeup. I only stumbled across it when I was trying to get an answer to my fluid retention, doesn't help with that though, and I have to take prescribed medication for it.

Have you or when do you see your specialist.