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Author Topic: Has anybody heard from lefty?  (Read 1430 times)

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Offline Tonny2

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  • Posts: 2,310
Has anybody heard from lefty?
« on: May 04, 2019, 10:34:31 pm »


      ojo.       Hola everybody... Any news from leftybowler300?... Thanks

Offline crisbarcelona

  • Member
  • Posts: 53
Re: Has anybody heard from lefty?
« Reply #1 on: May 05, 2019, 03:47:34 am »
Hello Tonny2,
I never wrote in the english chat because my english is not very good. But I read your post and i decided to write something.
I read always all the chats (english and spanish) and I could read the post of Lefty some weeks ago. I was worried for him. He was telling that was in hospital and was serious.....
Last days I was thinking too about him....
Tonny2 you are an angel.....

I hope he can read us and tell us how is doing..

Greatings

Offline virgo313

  • Member
  • Posts: 260
Re: Has anybody heard from lefty?
« Reply #2 on: May 05, 2019, 12:52:42 pm »
Hi Tonny,

I am too keen to know if anyone have heard of Lefty, I know Jim has lest a note asking how he was doing, but i have not read any reply from him. Hope all is well.

Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Jim Allen

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Re: Has anybody heard from lefty?
« Reply #3 on: May 06, 2019, 11:23:35 am »
Hiya

Well he was online last April 23rd, i'll send him a quick email tonight to check.
Sure he is doing well, it does take a lot of of a person but I also guess he would appreciate the concerns expressed :)

Best, Jim
HIV 101 - Everything you need to know
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Offline LeftyBowler300

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  • Posts: 97
Re: Has anybody heard from lefty?
« Reply #4 on: May 07, 2019, 02:16:21 am »
Hey guys  :)

I appreciate the concern. I start round 6 of max dose RR-EPOCH in two days. I get two Rituxans per round, as well as 2 lumbar punctures to inject chemo into CNS fluid to prevent CNS relapse (blah).

I've had a total of 10 lumbar punctures so far... Seems like my back gets more and more sensitive to them after each one.

I also get a shot in the belly every round with something called Neulasta. It stimulates the bone marrow to produce Neutrophils to keep the white cell count from bottoming out, but it makes all your bones hurt (ribs, skull, shoulders pounding) for a couple days.

I had a CT scan after round 2 that showed the tumor shrank by 50% so it was a sign that the chemo is working.

Even though they're blasting me with the highest dosage of chemo possible, I've been tolerating it decently overall. Don't get me wrong, chemo comes with a LOTTTTTTTTTT of side effects... Nausea, constipation, neuropathy, hair loss (even eyebrows and eyelashes), spontaneous bleeding, just to name a few... But I'm powering through it.

I've been distracting myself by playing video games and watching my favorite TV shows.

Round 6 is the last round, then I get a PET scan to see if all the cancer is gone (fingers crossed).

Definitely can't wait til this is behind me.

Hope you guys are doing well <3

Lefty
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh... wtf
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Stopped all prophylaxis

Offline Jim Allen

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Re: Has anybody heard from lefty?
« Reply #5 on: May 07, 2019, 03:34:54 am »
Hiya,

Just a short note as I am heading out to work. Glad to hear that things are going okay considering & thanks for the update

Quote
I had a CT scan after round 2 that showed the tumor shrank by 50% so it was a sign that the chemo is working.

50% after the 2nd round of treatment, that's great early results.

Quote
Round 6 is the last round, then I get a PET scan to see if all the cancer is gone (fingers crossed).

Rough times indeed, thanks for sharing. At least the end of chemo treatments it is now in sight, wishing you well.  Best, Jim.

HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Tonny2

  • Member
  • Posts: 2,310
Re: Has anybody heard from lefty?
« Reply #6 on: May 07, 2019, 07:12:55 am »


      ojo.       Hi lefty, I'm so glad to hear from you and very proud of you, keep fighting, I can only imagine what you are going through, so much poking, especially the punctures, ough!!!...hang in there my friend, you are not alone!!!... I'm sure lots of us are ruling for you and we are keeping our fingers and toes crossed for you so this cancer is gone for good soon...big hug on your way and please keep us posted then go back to your video games...we are thinkinabot you

Offline vrsan

  • Member
  • Posts: 36
Re: Has anybody heard from lefty?
« Reply #7 on: May 07, 2019, 10:24:28 am »
Good to hear from you! Video games are great distraction btw :)

Offline LeftyBowler300

  • Member
  • Posts: 97
Re: Has anybody heard from lefty?
« Reply #8 on: June 07, 2019, 01:11:33 pm »
Don't mind little old me just giving an update

I finished my 6th round of EPOCH last month, and I received my PET scan results today. COMPLETE REMISSION! My Onc and I agreed to do two rounds of methotrexate for preventative measures since my DLBCL had a high MYC expression that increases chance of relapse. She was actually on the fence about it since my PET scan was so good, but I went ahead and decided to do it. But I'm feeling great! Today is a good day 😁.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh... wtf
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Stopped all prophylaxis

Offline virgo313

  • Member
  • Posts: 260
Re: Has anybody heard from lefty?
« Reply #9 on: June 07, 2019, 01:18:00 pm »
Hi Lefty,

Donít understand those medical terms that u just update us but I will be smiling too since I see you smiling here.
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

 


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