Starting Treatment, Any Info about therapeutic Phlebotomies and Harvoni?

[swampthing]

After 35 years living with Hep C I will finally begin my trek towards the cure in five days, the pills arrive on Tuesday and I begin my cure on Wednesday 7/13/16, I'm excited to say the least. However for the past 6 years I have also been living with a blood cancer issue, i am lucky to have this particular disease as other forms of Leukemia are much more dramatic than this myeloproliferative neoplasm. I resisted the oral chemo (Hydroxyurea) that is used as treatment and have chosen to stick with therapeutic phlebotomy or bloodletting as it was known back in the day. Usually once a month a large amount of blood is removed, similar to a blood donation and I generally become asymptomatic for another month.

I've spoken with my Oncologist and also with my Liver doctor and neither has encountered this dual issue of Harvoni treatment and the neoplasm bloodlettings. I know this is a long shot but wondering if anyone here recalls hearing from anyone about bloodlettings and Harvoni therapy? Obviously I cannot go without the blood treatments during my three months with Harvoni but I haven't seen a thing anything relating to this and my docs seem stumped, which is a little unnerving but not letting the lack of info get in my way either as i realize it's a relatively rare combo.

I just found out last night that the pills would be arriving, after three previous denials and looking at the real possibility of traveling to Bangladesh to buy the generic pills I became quite emotional while speaking with the customer service rep, had to ask her for a pause as i surprisingly began to sob and then she started crying but five minutes later I was able to get her the remainder of my shipping info. I'm ready for life without this disease and haven't really experienced tears of joy in decades, what a novel concept!

Anyway, if anyone remembers anyone getting phlebotomies while taking harvoni let me know.

I'll post updates as I get moving along with treatment and any info i may get from my oncologist, for now all I think of to say is a New Orleans standard, Laissez les bon temps roulez!

[KimInTheForest]

Welcome swampthing! I love your avatar. And congrats on being poised to start Harvoni treatment.

I do not know the answer to your question, and I have no medical training, but my feeling is that blood-letting in conjunction with Harvoni would not be a problem. If you were also taking ribavirin (as I was: harvoni+riba for 12 weeks), that would  be another matter since the riba causes hemolytic anemia, so blood loss from phlebotomy could worsen that substantially. But I can't think of any way it would interfere with the Harvoni (or vice versa).

Staying well hydrated during treatment is important for preventing/reducing side effects. And I suppose phlebotomy could leave one temporarily dehydrated. So maybe beef up your hydration post-phlobotomy. I was drinking 2 quarts of water a day while on treatment. My pee continued to be yellow - often pale yellow. Someone on these forums pointed out that if you are drinking so much water that your pee is clear, you are drinking too much water.

Good luck!
kim

[Flutterby]

Hi Swampthing,

I just started treatment, am on day#3, and understand about feeling hope, and being moved to tears!

I've done so much reading on this for such a long time I recalled that phlebotomy was being used to treat HepC at one point. See here: http://www.hepatitiscentral.com/news/phlebotomy_gain/  (there are some other articles listed at the end of the article).

There are also a few posts in this forum by people who underwent phlebotomy, and I found one who was using Harvoni - although it doesn't say much about effects maybe you could follow up with the people who posted? (Use the search function ('phlebotomy') and they can be found).

I too am not a doctor, but maybe these links can lead you to more information.

Sounds like you have lots on your plate, and its great that you can access Harvoni! Good luck when your medicine arrives!

[swampthing]

Hi Flutterby, thanks for that link and the suggestion to search this forum - seems like i've searched all over the place and for whatever reason didn't search here...sounds like phlebotomy won't be nearly as bad as I was thinking, for some reason I was thinking it would remove the most recent doses of harvoni in my blood, my paranoid nature i guess but i just want to ensure every drop of that miracle cure stays in my bloodstream!

Kim, you are right on about the riba and anemia, one of the reasons i decided not to go that route earlier on and waited out the release of Harvoni, i remember one of the oncologists saying riba would likely negate the need for phlebotomy while on the treatment. It's seriously hot and humid right now in NOLA so i already drink a lot of water everyday but I'm planning to stay super hydrated for the next three months!  Speaking of hot and humid, that avatar is me playing archaeologist in Cambodia a few years ago.
-Sydney

[Flutterby]

I reckon it sounds like good caution rather than paranoia!
Maybe it'll be all about timing when the letting occurs?
But yes, it sounds like it may be fine under the right medical supervision.
Good luck, and look forward to reading about how it all goes!

[Mike]

This shouldn't be a problem given the 1/2 life of two compounds contained in Harvoni. Since the peak of these compounds is reached approximately 4 hours after administration, it might make sense to schedule the phlebotomy for early in the morning and take the dose right after the blood draw (or just take the medication at bedtime from the beginning).

In support:

"Peak concentrations for both components of Harvoni are reached approximately 4 to 4.5 hours after administration of a dose. The elimination half-life is 47 hours for ledipasvir and 0.5 hours for sofosbuvir."

Also note, at most, you will only need 3 phlebotomies while on treatment. If you have a phlebotomy once per month, you could actually time this so you would only have 2 phlembotomies while treating.

Best wishes, Mike

[swampthing]

Thanks Mike for the info on the half-life, excellent thinking and you are correct about timing the phlebotomies so there's only going to be two. I just checked my hematocrit/hemaglobin and I'm 0.2% from hitting the treatment #'s of 15/45% and planned to go on Monday to have my "oil changed" so there should only be 2 more phlebotomies during the course of Harvoni plus the reality of the compounds' half-life  really resolves all fear I had about losing a dose or two with the blood loss, thanks again for the well thought answer.

[Mike]

I'm glad you can move forward with HCV treatment, which will go very fast. Then, onward to the cure!

Best wishes, Mike

[Determined]

Hi Kim.  Still feeling better?  What helps you most?

[KimInTheForest]

Hi Kim.  Still feeling better?  What helps you most?

I am still feeling better. Thanks for asking. I go in for an important test tomorrow. So will see what happens there. Won't have results til end of month.

Hard to say what helps me most. I have been making a big effort to exercise daily (30-min brisk walk at minimum); bathe daily with dry-brushing of entire body prior (to stimulate lymphatic flow); eat as much as I can all day long; drink plenty of water; keep positive thoughts and energies in me and around me and banish negative one quickly with special mantras and affirmations; and take my daily pill regimen (iron, Vit C, B-12, B-complex, D).

Last month I FINALLY started to feel like my old self. But that was 11 months post-treatment! So it has taken me a full year to get my groove back. And I still have some issues... still anemic so still have elevated resting heart rate, still have enlarged lymph nodes, still have some blood abnormalities that I did not have pre-treatment, etc. But my level of functioning for my day-to-day life is finally back to where it was pre-treatment.

kim

[Determined]

Very glad to hear this, Kim.  That was a tough road!  Here's hoping the rest of the issue will follow suit.  Thanks for letting me know.

[AussieRosa]

Kim, glad to hear you're starting to get back to a normal level of functioning. Things were really worrying for quite a time there. Do you still get the fevers you mentioned? I ask because mine went away but this last week they've come back, albeit a lot milder than before.

[KimInTheForest]

Kim, glad to hear you're starting to get back to a normal level of functioning. Things were really worrying for quite a time there. Do you still get the fevers you mentioned? I ask because mine went away but this last week they've come back, albeit a lot milder than before.

My fevers did finally go away, and that was a good sign that I was getting better! They have, oddly, been replaced by something else in recent weeks that feels like menopausal hot flushes. Yet I am several years beyond menopause. I think this post-treatment malady of mine has monkeyed with my body's thermostat.

kim

[AussieRosa]

Not long after EOT I also had what felt like a resurgence of menopause even though I was 3 years post it. I had the menopausal type hot flashes as well as what felt like fevers. Both are now mildly back. Unlike you, my blood work is really good apart from excess iron and a slight worsening of my  hypothyroid condition. I don't have fatigue, for which I'm very grateful. All very odd.

[Determined]

That menopausal stuff is hard to understand.  I started at 47 and sort of finished at 53 but have had surprise hot  flashes from time to time.  Hormonal changes aren't just on/off so it is normal to have unexpected degrees of flux.  I am 65 now.  I was diagnosed and treated for HCV at 64.  It hope we learn more about what is attributed to post treatment and what is the normal onset of other "stuff".  We're the pioneers.  I look forward to hearing and learning more.  In the meantime, keep on getting better in every way!

[AussieRosa]

Thanks for that info, Determined. That's quite reassuring. It could just be hormonal fluctuations that are unrelated to anything else. All the best.