Well now what ?

[dperry10]

Went for my appt yesterday morning for my visit with Hemotologist.    Everything is still on the low side

WBC 2.2
RBC 2.88
HGB 10.1
PLATELET 123
ABSOLUTE NEUTROPHILS 902

He was also concerned over the weight loss now, says don't want to scare you or anything, but when was your last MRI on your liver ?  I said they did them when I had my bx, and when they did ultrasounds .. But that was a year ago now.. He says its time to do it again.. he says unfortunetly, People who suffer from HepC  can develop cirrossis or Liver cancer.  you should not still be losing this weight.   I said, isnt this why I have been on treatment for the last year, to make sure I do not develop those things ?     He says he wil get with my treatment doctor to get results of all the tests he had ordered,  ( which I gave him copies of )  and see if they can come up with a plan to find out what is going on.   Now I am scared.   After reading another relapse yesterday,  I am feeling very discouraged right now.   I just pray that I can talk him into letting me do one at 3 + 6 mos.  But what if its not working anyway..  I don't want to go thru treatment again..

[dperry10]

Went to my stepdaughters baby shower this afternoon.   It was so cool outside though, I was freezing, but better than the A/C inside and all the noise , I could not have handled that for long.   But it was nice, saw some old friends that haven;t seem me since being on treatment.  So was not quickly recognized.    

LadyBug,   yes feeling a bit better today.. Yesterday, was dizzy most of the day.. tried to do some shopping but ended up abandoning my buggy and came home.  could not even stand in line to pay for what I had gotten.    He did not reduce my riba last time , cuz I was like at 172, and he said below 170.. Which I am now, but I still take my 6 a day.  Only have 1 week left to get rid of anymore of this weight on meds.  Then I am sure I will really have to watch my weight.  I refuse to gain it back. I guess I will still be taking Riba the week after I do my last shot on Friday.     Makes me wonder if they are shooting people with interferon to get rid of love handles.. I saw a story on it last week, shoing getting shots of something in those target areas, and it eats away the fat..   May have a new idea there ?  LOL  just kidding would not want anyone to have to go thru weight loss this way.

[ladywhy]

Do you know if that has to do with pills as well as the weed itself ? Just curious...

[merryBe]

love u 2 pieces dude, but this

..>>>>>>>>>>>>>As to the weight, don't know how much you've lost, but some have had success with medical marijuana. You might want to talk to your treatment doctor about that.

this a no no with hep c...causes bridging fibrosis at 7 times the average rate.
there are some non-wasting things that don't damage the liver, but marijuana ain't one of them.

with all due respect to you, Jim.
merryBe

[ladybug52]

Glad that your anxiety resolved itself while I read the post. As you said, he deals with cancer patients so this is what he sees in his patients.
I think you'd notice something like liver cancer going on. It's usually painful and swift.
You sound good! Very clear thinking going on for someone with so much meds in their body.  Did they ever reduce your meds because of the weight loss?
Only one shot left! Congratulations!
Hugs,
Bug

[ladywhy]

They now have a marijuana pill that can help with your appetite...if you don't care to smoke. Ladybugs father was prescribed that and it did help. Try not to get discouraged...it seems to me the hemo dr. spoke out of line and should have talked first w/ your tx dr. No wonder you were upset. I guess Tuesday can't get here soon enough. I wish you well!
Keep us posted and i hope you will enjoy the weekend.
Y

[dperry10]

JmJm I was 267  before starting treatment, and about 257 when I started, after dieting for a bit.  I am 5'6.   So it was alot of weight I had gained since first treating..  when I blew up after treatment, gained 100 lbs.. So feel like I lost what the last treatment gave me.. LOL  

The did a C-19 tumor marker test and it was fine. So I really doubt its anything

Child24angel ~  I am surely looking forward to feeling better..

Susan ~
I am not sure.  They did the ultrasounds on liver , speen and lungs, and did an MRI with the Biopsy, but that was before starting treatment.  he did ask about the alpha fetoprotein test though, wanting to know the last time I had one,    I think that was last year too...  He was trying to suggest that because of the weight loss it could be cirrhosis or Liver cancer, and wanted to know when I was last tested on the above., but that is my Hemo doctor.   I see my GI next Tuesday, and will see what he says about all this, he may want to wait and see if I gain any weight after treatment.    Which I keep telling them.. Its not gonna happen.. I refuse to gain the weight back..  I am happy here..   Ready for that new wardrobe to go with my new hairdo, and body.. LOL

[susan400]

I don't mean to be sounding like a big dumb-dumb, but when is an MRI indicated?  Do you have cirrhosis, I can't remember?  The reason I ask is because, I've never had an MRI of the liver.  None of my doctor's have ever mentioned it.  I've had 4 different biopsies, but never an MRI.  My doctor does ultrasounds on me every 6 mon. and an alpha-fetoprotein test.  Now, I'm wondering if I'm missing something here?  Can you explain?   Susan

[jmjm530]

That's a big weight loss. May I ask what was your pre-tx weight and how tall are you? I lost close to 40 lbs but I was almost at my ideal weight to start with. At one point, my doc said if I lost another ten pounds they would consider anabolic steroids as they often do with wasting HIV patients.  Testosterone and medical marijuana were already on the table, as also with HIV wasting. Fortunately, my weight finally held and I can say all has been gained back and then some post tx :) Not at all saying you shouldn't look into it and get an MRI -- you should -- just trying to relate that a lot of people lose weight on tx and the reason most times is the tx drugs. Hopefully, that's all it is in your case and once you stop the drugs you'll gain however much you want back.

- Jim

[dperry10]

I have lost 106 lbs so far..    

[dperry10]

I have lost 106 lbs so far..    

[dperry10]

Well that was my last appointment with him,  I didn't make another appointment when leaving, as I do not remember him saying .. I see you in a month.. just said he would get with Nash and come up with something, and review the files.     I just started wearing clothes that actually fit me, maybe thats the difference,   not wearing baggy baggies.. And they can really see how slim I got.   I dunno.. But I think I am fine in regards to that.. honestly..    Its just the meds and give it 3 weeks I bet I gain some.. I will try to maintain what  I have and go from there.  And if they want to do new MRI's what can that hurt right ?   Just want to take a break from it all for awhile and see what happens..   I am so ready to start feeling like a person again.. be able to stand to cook and clean this house up.     As it is.. I sit on a barstool to cook.. It really suxs.. LOL    Oh and I found my labs.. everything was about the same except the absolute neuts..  were like half  1800 on prev, and 900 on this.. so no concern really..    I see Nash next week on tuesday, and will update then.

[jmjm530]

dPerry: My hemo is just a hemo..
-------------------------------------------
I think that's the problem and he seems over his head in terms of HCV treatment knowledge. Why he's IMO needlessly scaring you is terrible. The issues you describe should be discussed with your treatment doctor. As stated, weight loss on treatment is very common. Do yourself a favor and speak to your GI about all this. If you don't feel your GI is competent with HCV, then the solution is not to be treated by a hemotologist but to find a more knowledgeable liver specialist (hepatologist).

-- Jim

[dperry10]

It was my Hemo doc I saw yesterday, and he should have copy of the bloodwork , just as I do . , But today cannot locate them.. I tore this house apart and cannot find all my labs.. I know they have to be here somewhere.. Anyway, I did not seeing hemo till Feb, and he didn t have copies from my GI about the bx and ultrasounds.  Just bloodwork.     Maybe its just more noticable to them ?  the weight loss ?  But it really is , due to lack of eating as much as I used to.. I had to get my sugar back in line and have been cutting portions, and not eating starch.. very little red meat.. etc. trying to eat healthier.  Maybe the drugs just really attacked the fat content.. I just hope it continued to do its job on the HepC.   I am not getting sick anymore, just eat small portions.  palm size portions a few times a day.. Sometimes if I gag on something , then I lose it but.. Not on purpose thats for sure..

JmJm,
My GI is a Gi, Infectious disease and cancer center..   My hemo is just a hemo.. but if you remember my GI was pretty good at sticking to SOC, but he lightened up as time went on.  He was concerned over weight loss last month, and had me to a Colonoscopy.   they found 3 polyps but they were ok.. and he ran a c19 tumor marker test, which was 22.. He said was fine.   I told the hemo to check the copies I brought to him, and in the meantime he will be getting with my GI to go over all those tests.   I really believe its just the meds.     It wasnt a connection between weight loss and another person relapsing.. Its just all so much to take in ,and then to read about others pain, was just discouraging for me.    I know its probably nothing, but I will let them come up with a game plan to see what other things they can test.  In meantime.. I have 1 shot tonight, and then next week, will be my last one.    I did ask him about medical mj once, but its not legal in our state., for medical or otherwise...

Goldenrule ~ see paragraph above.. It has given me the hungries in the past and every once in a while can get some from a friend..  Will try it again

Mr Meet ~
Yes my blood work has been like that all along. really no change.. the lows we expect.   Thats what I am saying nothing is changing on there, and other than the concern for the weight loss all of a sudden, I do not understand.     When going thru tx 14 years ago.. I lost about half of what I have lost now.. But I was not heavy then.  I got down to 85 on treatment, and weighed about 150 when starting ( 14yrs ago )  being 85 I ws skinny skinny,, they put me on high calorie diet and I blew up, struggled with weight for all these years after, and became diabetic.  So I am not a yo yo by any means.. I kept that weight all those years, and had other medical issues after first tx.   Not realizing any relationship to tx or HepC.    So losing the weight.. NOT a concern to me.  I just have to keep it off.  I never ever want to be that size again...    I kept telling everyone there really is a petite person in here..    Now I finally am, and plan to keep it that way.   But I am sure that once I stop taking these meds, I will get my appetite back.   Food is already starting to taste better..   But I have to make sure I eat small portions, and keep my weight, but I am still losing right now..    They did a bx on my liver, and there was only mild fibrosis, no cirrosis... and if I have not been drinking, and nothing to harm my liver, other than this dang poison we take, then there still should be no cirrosis.  I agree, I think he is just being cautious and since he deals with cancer patients mostly, he sees
the same sypmtoms in his patients.    But will definately have it all checked out.  I just may have to wait till the new year to do it all.  Alot of peeps on vacation for next couple months.  hard to take time off..

[mremeet]

Your bloodwork looks pretty darned typical to me, and although you may feel like **** your platelets, ANC's and HGB all seem within "continue on" parameters. My HGB was as low as yours, similar platelets, much lower ANC's (about 400) and continued on without any real trouble. Many others do too. As far as your weight loss, is there a rational explanation for it outside of cancer? I mean are you virtually not eating *anything?* If I recall you said you were more than a 100 lbs overweight and had experienced very wide undulations in your weight in the past. If that's right, then you could be once again shedding a lot of water weight just as you did in the past. If there's a pre-existing pattern of large weight loss/gain previously and you do not have cirrhosis, then in my layman's opinion I'd take that as a good sign HCC is unlikely. Obviously listen to your doctor and be screened for the HCC and whatever else, but I certainly wouldn't get all worked up over it just yet. Sounds like your doctor's just being safe and conscientious (which is good!). And again your labwork looks very typical to me for someone in your stage of tx. Also often people with cirrhosis (i.e. the one's most at risk for developing HCC) and on treatment have lower platelets than you do. Hope you're feeling better soon, in the meantime maybe some hash brownies are in order? ;-)

[goldenrule]

i gained 5 lbs on treatment due to moderate use of cannibas.. it does help with appetite, but increases the brain fog...

[jmjm530]

on med marijuana: http://www.hivandhepatitis.com/hep_c/news/2006/091506_a.html

[jmjm530]

How experienced is your hemotologist with Hep C? (I'm assuming that this is a hematologist (blood specialist) you're talking about and not a "hepatologist" (liver specialist)

Many hemotoloigsts aren't that experienced with Hep C patients and are more used to seeing Cancer patients on Chemo who may have different issues.

It would seem to me that much of what the hematologist is  saying should come from your treatment doctor -- ideally who should be a liver specialist (hepatologist). Hep C is a very misunderstood diseases, even in the medical profession, which again is a good reason to seek advice and treat with a liver specialist (hepatologist).

Hard to make an individual comment based on just the above information, but in general weight loss on treatment -- even significant weight loss -- is not that unusual, and certainly in and of itself does not suggest  liver cancer or anything of that sort.

You're on week 44 of treatment if I understand things correctly. I lost close to 40 pounds during treatment and had little to lose when I started. I've read the same from others. Interferon can waste some people on treatment, or "eat muscle" as my NP put it once. So, given the fact you're on treatment, that would be the first thing that would pop into my head re your weight loss -- the treatment drugs are causing it -- not liver cancer. (Liver cancer was never mentioned during my treatment as a reason for weight loss).

Of course there's no reason not to get an MRI, but unless I'm missing something, I think your henmotologist may be scaring you unecessarily.

Not sure what other tests the hemotologist has ordered -- you should ask him and get your own copies -- but the fact that you've lost a lot of weight doesn't mean that you might relapse. Don't see the connection at all.

As to the weight, don't know how much you've lost, but some have had success with medical marijuana. You might want to talk to your treatment doctor about that.

All the best,

-- Jim

[wyntre9]

I'm praying this is just a blip, dp.

I agree,

doing tx again . . . . . .

And it seems weird that you've been losing huge amounts of weight and all of a sudden he noticed?

idunno. . . . . and why doesn't he know when you had your last MRI?   Isn't it in your chart?

FYIW . my gastro when my wbc and anc tanked 75% during the first month.  The hemo shot me up with neupogen and then confessed he didn't know why my gastro thought it was such a big deal . . . but my gastro insisted i keep doing the neup twice per month and is convinced it's kept anc.WBC to dropping below alert levels.

The hemo still disagrees.

Try to calm down.  It seems like the hemo might have consulted with your treatment doctor before alraming you, possible unnecessarily.

hugs,

wyntre