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Author Topic: In the hospital  (Read 2677 times)

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Offline LeftyBowler300

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  • Posts: 94
In the hospital
« on: January 13, 2019, 11:12:25 pm »
Well I definitely wasn't expecting this....

I went to the ER last night for upper right abdominal pain. I figured it was maybe a gallstone.

CT scan showed a 6cm mass on my liver. Bilirubin is elevated.

Infectious Doctor said it looked like a dense mass, which either suggests a really, REALLY dense abcess, or more likely, a tumor.

So this kind of throws me... I don't have hep b or c, no drug or alcohol abuse history. I don't have cirrhosis.

I've had a shitty diet recently but fish tits I didn't think it was give me giant cancer bad.

I get MRI results tomorrow to figure out wtf this is.. I'm hoping for some sort of bacterial infection causing an abcess, but I'm preparing for cancer. I guess there's no surprises that way.

I thought I was doing pretty good too. Guess not.
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline Jim Allen

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Re: In the hospital
« Reply #1 on: January 14, 2019, 03:08:26 am »
Hiya

Sorry to hear about this scare, I know how frightening it can be. Fingers crossed it's just a bacterial thing, wait and see I suppose.

Hugs

Jim
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Offline fabio

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Re: In the hospital
« Reply #2 on: January 14, 2019, 03:35:18 am »
I doubt it was from your diet. I don't think masses grow out of  nowhere,so I do believe it's probably something bacterial.
I hope and pray it's something very minor and that you feel a lot better later. Positive vibes from.me.
Question:do you have other symptoms or just the pain in that area?

Offline daveR

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Re: In the hospital
« Reply #3 on: January 14, 2019, 06:27:43 am »
Good luck with it all. I wish you all the best.

Dave

Offline Tonny2

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Re: In the hospital
« Reply #4 on: January 14, 2019, 06:58:51 am »


     ojo.    Hello lefty... I am so sorry for what you going through, let's wait and see what the doctor tells you... You are not alone wherever it is we Will fight... Please keep us posted... Best of luck...hugs.    ojo

Offline LeftyBowler300

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Re: In the hospital
« Reply #5 on: January 14, 2019, 10:18:06 am »
I doubt it was from your diet. I don't think masses grow out of  nowhere,so I do believe it's probably something bacterial.
I hope and pray it's something very minor and that you feel a lot better later. Positive vibes from.me.
Question:do you have other symptoms or just the pain in that area?

No fevers no jaundice.
It started shortly after Christmas. When I would wake up I'd get these attacks that would last 10-20 minutes.
Stabbing cramping pain under my breastbone that felt like I got punched in the stomach by hulk. I'd be laying on the floor.
The attack would go away, then all that would be left would be a dull achy feeling on my right side that would be worse when I extended my stomach or moved a certain way (tolerable, however)
Next morning the same stabby crampy attack, followed by dull mild ache.
The attacks went away after about a week, but the dull mild ache stayed, and slowly got less tolerable, and a couple days ago it got bad enough for me to just cut all the lights and the TV off and lay on the couch. That's when I figured "I should probably go get checked."

Thanks Tony jim and Dave for your support
« Last Edit: January 14, 2019, 10:21:30 am by LeftyBowler300 »
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline Tonny2

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  • Posts: 2,238
Re: In the hospital
« Reply #6 on: January 15, 2019, 05:03:52 pm »


     ojo.    Hello Lefty, how are you?... I've been thinking about you. Did you get your MRI's result?... Please let us know how we can help you, whatever it is we are here for you, you're not alone... We accept the challenge... hugs.            ojo

Offline LeftyBowler300

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  • Posts: 94
Re: In the hospital
« Reply #7 on: January 23, 2019, 12:14:53 am »

     ojo.    Hello Lefty, how are you?... I've been thinking about you. Did you get your MRI's result?... Please let us know how we can help you, whatever it is we are here for you, you're not alone... We accept the challenge... hugs.            ojo

Hey Tonny,

Sorry it took so long to update. There's definitely a "limbo" period where teams of doctors get their ideas together, as well as waiting for results etc.

I got the biopsy results today, and it's confirmed Non-Hodgkins Lymphoma.

Shortly after the biopsy results I underwent a bone marrow biopsy. This procedure definitely hurts, but not as bad as the googles say. I could survive through it again.

Tomorrow is the PET scan.

Hopefully I'll get the specific type of Lymphoma as well as the staging soon. And then the treatment options!

I will fight this like I fight everything else. Headstrong.
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline Carlos 32

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  • Posts: 34
Re: In the hospital
« Reply #8 on: January 23, 2019, 09:02:41 am »
You are very strong, I send you all my good energies, you will be in my prayers, your strength, courage and fighting spirit will allow you to overcome this test, that you never doubt it, keep the faith and attitude up and everything will come out Well, a hug from Colombia.

Offline LeftyBowler300

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  • Posts: 94
Re: In the hospital
« Reply #9 on: January 23, 2019, 10:33:06 am »
I appreciate it man



Update: somewhere in all of the fiasco my lymphocytes, and therefore, CD4, took a hit.

They did a test just to make sure VL was UD (which it was), and took CD4 as well. Back down to 58 it went, but the percent was 8.3% (the highest it's been), so I didn't fret too much.

I'm sure I'll be put back on all the stupid prophylaxis that I just got off of while I'm on Chemo.

Also I think it's important to note that this definitely didn't present itself to me as Cancer, or Lymphoma, in the form of symptoms. I honestly thought I had a gallstone or maybe even an infected gall bladder.

I'd wake up and have an "attack" where it felt like someone stabbed me under my sternum. I'd lay down on all fours on the floor the pain would be so bad. It would last 10 minutes, always in the morning, then it would go away and I'd be fine the rest of the day. No fevers, no chills, no weight loss, no jaundice, no headaches. That's what's scary is that this could have easily been missed. I waited 3 weeks to go to the ER. I guess thats all it took for a mass to grow to 6.2 cm and start blocking important ducts. During the biopsy they placed 2 stents in the ducts to open them back up.

I'm still on the liver surgery/transplant floor of the hospital, since initially they thought it was a liver tumor, but I'll probably be moved to the oncology unit sometime over the next few days while they finalize type and staging and finalize a treatment plan.

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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline Loa111

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  • Posts: 165
Re: In the hospital
« Reply #10 on: January 23, 2019, 10:40:05 am »
Sorry to hear about your health issue. Hope all works out well for you & Get Well Soon!
 :)

Offline Jim Allen

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Re: In the hospital
« Reply #11 on: January 23, 2019, 10:42:45 am »
Hiya,

Really sorry to hear this, wishing you strength during the time ahead and, do keep us posted.

Jim

HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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 Ptrk3

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Re: In the hospital
« Reply #12 on: January 23, 2019, 10:51:08 am »
My thoughts are with you:  I wish you the very best.
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Tonny2

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  • Posts: 2,238
Re: In the hospital
« Reply #13 on: January 23, 2019, 11:53:43 am »


     ojo.    Hello my dear friend Lefty. You have no idea how much it hurt me to read about your diagnosis... I just want to let you know that you are not alone fighting this cancer, I am sure everybody here will be thinking about you, keeping you in their prayers and thoughts... I still remember your first post,you may know I've been following your progress. I'm sure does you will be fighting this cancer with the same attitude and strength cute alien fighting hiv. Again, you are not alone, keep your spirit high, we are here for you... Please keep us posted... A big heart on your way, I know you can beat this. Our friend Buckman beat it, you will beat it too...more hugs

Offline LeftyBowler300

  • Member
  • Posts: 94
Re: In the hospital
« Reply #14 on: January 23, 2019, 05:42:39 pm »
Thank you Loa, Jim, Pat and Tonny.

So they're switching my regimen (minimally) due to potential elvitegravir/cobicistat interference with chemo drugs

They're putting me on the same one a day descovy part of Genvoya, but I'll be taking raltegravir twice per day instead.

Yay for foodless pills but boo for an integrase inhibitor downgrade.

Docs will be by soon to talk about PET scan results and next plans.

I'm thinking they'll need to do an open biopsy because they said the scope biopsy didn't give them enough to go on (yay...)

Oh, and there was nothing in the bone marrow biopsy (actual yay!  :D)

Can't wait to kick this tumor in the nuts.
« Last Edit: January 23, 2019, 05:46:14 pm by LeftyBowler300 »
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline harleymc

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  • Posts: 1,210
Re: In the hospital
« Reply #15 on: January 23, 2019, 06:25:08 pm »
Dear Lefty,
  sorry to hear about this latest health challenge.

Do keep updating us.

Got everything crossed for you.

Hoping you hit it out of the park.

Offline hoffnung

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Re: In the hospital
« Reply #16 on: January 24, 2019, 05:12:26 am »
I am really sorry to hear about this Lefty. You have been one of my role models since I have been diagnosed, stay strong man and all my prayers are with you.

Offline virgo313

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  • Posts: 186
Re: In the hospital
« Reply #17 on: January 24, 2019, 10:53:01 am »
Hi Lefty,
Wishing you the very best & back to healthy fast. 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   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline fabio

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  • Posts: 296
Re: In the hospital
« Reply #18 on: January 24, 2019, 12:40:57 pm »
I'm very sorry for the news. I hope and wish you get through this and come out of it stronger and healthier.

Offline Mindless

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  • Posts: 166
Re: In the hospital
« Reply #19 on: January 26, 2019, 10:22:22 am »
My thoughts are with you.

Offline Tonny2

  • Member
  • Posts: 2,238
Re: In the hospital
« Reply #20 on: January 27, 2019, 11:28:56 am »


     ojo.    Hello Lefty... just want to let you know that you are in my thoughts everyday, and I'm hoping you feel my energy Everytime you are going for a chemo treatment... I ask myself why you got this cancer and no me, after all, I've been living with the virus for 24 years. It makes sad because you are a young man who left I'm an old fart. Trust me, if I could, I'd switch places with you... don't want to bother you with PM...YOU ARE NOT ALONE...hugs

Offline Mindless

  • Member
  • Posts: 166
Re: In the hospital
« Reply #21 on: January 28, 2019, 10:14:24 am »

     ojo.    Hello Lefty... just want to let you know that you are in my thoughts everyday, and I'm hoping you feel my energy Everytime you are going for a chemo treatment... I ask myself why you got this cancer and no me, after all, I've been living with the virus for 24 years. It makes sad because you are a young man who left I'm an old fart. Trust me, if I could, I'd switch places with you... don't want to bother you with PM...YOU ARE NOT ALONE...hugs

Hi Tonny,

Lefty is very lucky to have a supporter like you. If a God exists may he bless you.

Lefty, stay strong!

M

Offline Tonny2

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Re: In the hospital
« Reply #22 on: January 28, 2019, 09:38:54 pm »


      ojo.   Hi...@Mindless, thank you for your kind words... I hope you guys excuse my post's mistakes, I am dictating in my cell phone, and it seems to have its own mind.. I am legally blind.

Offline LeftyBowler300

  • Member
  • Posts: 94
Re: In the hospital
« Reply #23 on: January 28, 2019, 10:19:48 pm »
Hey guys,

Finishing up my first round of EPOCH+R on Wednesday. The first day of chemo really sucked. I took Rituxan by itself and had a pretty bad reaction. Abdominal pain that was about a 9 out of 10 on the scale and I was hyperventilating. Once I got through that the rest hasnít been nearly as bad.

Still waiting on the results to see if itís in my CNS.
Also waiting on the molecular pathology to see if it has any mutations that make it more likely to relapse or resistant to chemo.

If these are all clear than prognosis is golden.

Overall Iím in good spirits. Iíve had a headache and nausea for the past 3 days, but nothing that Tylenol and Zofran canít handle most of the time.

Two more days then I get to go home for two weeks, then Iíll be back in the hospital for a week (that cycle will continue until all treatments are done)

I requested leave from work.. theyíre pretty good about it. Iíll get paid for some of the time missed. Probably not all.

Hopefully the tumor is already shrinking and there isnít any signs of disease anywhere else. *fingers crossed*

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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline virgo313

  • Member
  • Posts: 186
Re: In the hospital
« Reply #24 on: January 29, 2019, 12:27:54 am »
Hi Lefty,

Hang in there for 1st few session. it gets "easier" after 2 or 3 rounds of chemo.
I feel "odds" during my 1st & 2nd chemo session & later session very tolerable. 

Not sure if you believe this or not. I drank lots of coconut water during chemo.
https://www.youtube.com/watch?v=QEMoFaa91NM
even if you cannot get fresh coconut water, maybe packets ones will help also.
Hope the best during ur all chemo session. 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   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline LeftyBowler300

  • Member
  • Posts: 94
Re: In the hospital
« Reply #25 on: January 29, 2019, 10:13:31 am »
Hi Lefty,

Hang in there for 1st few session. it gets "easier" after 2 or 3 rounds of chemo.
I feel "odds" during my 1st & 2nd chemo session & later session very tolerable. 

Not sure if you believe this or not. I drank lots of coconut water during chemo.
https://www.youtube.com/watch?v=QEMoFaa91NM
even if you cannot get fresh coconut water, maybe packets ones will help also.
Hope the best during ur all chemo session. Tks

Thanks man. Theyíre doing it all by PICC line. I feel very uncomfortable in my skin at times, and I hate constantly being connected to the IV pump by lines... I canít wait for a 2 week break from this.. Iíll still have the PICC line in but Iím sure it will be easier to ignore without something constantly stuck to it.
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline Tonny2

  • Member
  • Posts: 2,238
Re: In the hospital
« Reply #26 on: January 29, 2019, 07:50:12 pm »


    ojo.    Hi Lefty... I'm very happy for you. I know you are a tighter, hang in there. I know how  uncomfortable  PICC lines are, but it's the only way to get the chemo treatment or a medaport put in your chest, Iv won't hold the meds...proud of you my friend... Please keep us posted... hugs.            ojo

Offline LeftyBowler300

  • Member
  • Posts: 94
Re: In the hospital
« Reply #27 on: February 03, 2019, 06:43:30 pm »
I guess I'll give an update

I'm now 5 days removed from round 1 of EPOCH+R
On the last day of treatment I had one more Rituxan infusion, followed by a Neulasta shot in my belly to stimulate WBC growth. The shot burned a little, but not too bad.
Overall I'm feeling okay after round 1. Some insomnia, fatigue, tummy pain and nausea, but I'm managing it.
I'm on a ton of Prophylaxis while my immune system gets beat up.
Still have my hair, but I'm pretty sure I'll be bald, or at least shaven, somewhere between rounds 2 and 3.
I get to take a chemo pump home that will administer the chemo so I don't have to be admitted to the hospital for 5 days every round.
No CNS or Bone marrow involvement, and it's not double hit, which means it responds really well to chemo. So happy for this part!
Round 2 starts in 10 days.
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline Ptrk3

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  • Posts: 2,663
Re: In the hospital
« Reply #28 on: February 03, 2019, 06:56:07 pm »
Glad to read no CNS or bone marrow involvement.

Keep your spirits up.

Best wishes for continued improvement!
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline MarkintheDark

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  • Posts: 135
Re: In the hospital
« Reply #29 on: February 03, 2019, 07:03:08 pm »
If you're anything like me, just being able to go home to familiar surroundings and quiet is HUGE.  You're a trooper and I congratulate you!
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline LeftyBowler300

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Re: In the hospital
« Reply #30 on: February 03, 2019, 07:39:15 pm »
If you're anything like me, just being able to go home to familiar surroundings and quiet is HUGE.  You're a trooper and I congratulate you!
Yes! This part is a big bonus for me. I definitely didn't want to be hospitalized for 5 days every 3 weeks. Nasty food, uncomfortable beds and round the clock nurses who won't let me get some shut-eye in the uncomfortable beds lol.

And thanks ;D
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline virgo313

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Re: In the hospital
« Reply #31 on: February 03, 2019, 11:32:09 pm »
I had two of the same "chemical/drugs" pumped into me. I did not have any hair lost, hope others drugs will not hair lost. yes, bed can be uncomfortable, i did the next best things that i can do, I "check-in" with my own pillow. Hope you still require shampoo throughout chemo. All the best.
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   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline LeftyBowler300

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Re: In the hospital
« Reply #32 on: February 16, 2019, 07:43:12 pm »
Don't have much of an update other than round 2 is over half way finished and I'm bald lol  :o.

Not taking the chemo too bad though. I'm hanging in there.
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 and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline dml1964

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  • Posts: 29
Re: In the hospital
« Reply #33 on: February 16, 2019, 09:04:56 pm »
I had Bendeka and rituxin every 28 days for 6 months for my stage 4 NHL. Last chemo was November of 2017. This actually how I found out I was poz. I just had a CT scan with contrast yesterday and have now been I remissionn for 18 months and my oncologist now only wants to see me every 6 months. Youíll do just fine!! Good luck and fuck cancer.

Offline Jim Allen

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Re: In the hospital
« Reply #34 on: March 16, 2019, 06:05:34 am »
Don't have much of an update other than round 2 is over half way finished and I'm bald lol  :o.

Not taking the chemo too bad though. I'm hanging in there.

Hiya,

Bald is sexy i've been told.

Anyhow just wanted to check in on how you are doing? You must have finished the halfway point in terms of Treatment cycles or just be on the midway point now right?

Best, Jim

 
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Offline fabio

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Re: In the hospital
« Reply #35 on: March 16, 2019, 10:01:31 am »
Hang in there man,bald is sexy as told above lol.
How do you feel btw? Do you have to do chemo and take the meds too?

Offline tryingtostay

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Re: In the hospital
« Reply #36 on: March 16, 2019, 03:52:52 pm »
Keep the spirits up!

Offline lightalltheway

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Re: In the hospital
« Reply #37 on: March 16, 2019, 06:44:12 pm »
LeftyBowler300

I just read your message, I don't know how and/ or why I missed it. But I do remember your first post very well and I remember my comment on it. and I am here tonight to tell you exactly the same, you are a hero. You will make it, and you will fight it.

My heart and my sincere prayers are with you during this time, I will not call it difficult, but rather challenging, a wonderful person like you knows no failure.

Light all the way,
Prince

 


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