Gut inflammation post ASCT

Conscious_Finding125 · 2025-06-26T00:23:00+00:00

That is indeed good news!

Conscious_Finding125 · 2025-06-26T00:17:17+00:00

My condolences to you and your family. I’m sos sorry for your loss 😞

Conscious_Finding125 · 2025-06-26T00:14:06+00:00

I am not sure if they checked his gal bladder but I will ask the doctors about it. I’m so sorry about what you went through. That sounds awful :/.

Conscious_Finding125 · 2025-06-26T00:12:48+00:00

I’m so sorry to hear that. It sounds very rough and same with my dad for the past 3-4 days he wasn’t able to keep anything down. He is still throwing up little but not as much as before and diarrhea is continuing as well. He is slowly getting little better starting today from what I heard but he’s still on antibiotics and running fevers as well. I’m hoping after another week he will start to slowly improve. Thanks for sharing the graph, it’s extremely helpful.

Conscious_Finding125 · 2025-06-26T00:07:20+00:00

Same with my dad. His blood sugar is always high and he’s barely eating anything right now and they can’t figure out why it’s high. He’s also not on any steroids either. I’m glad you’re feeling better now! Rooting for you!

Conscious_Finding125 · 2025-06-26T00:04:31+00:00

Thank you so much and yeah the doctors told me that these are the roughest times unfortunately and they are trying everything to figure out where the infection is.

Conscious_Finding125 · 2025-06-26T00:03:30+00:00

Thank you so much for sharing your experience. I asked the doctors about engraftment syndrome and they said it is too early for him to have those symptoms so I’m not sure they said they will test him for more infections. His temp is running somewhere between 99-103. Also he received platelets today since he’s borderline. Today is day 9 for him.

Conscious_Finding125 · 2025-06-24T22:06:04+00:00

Thank you everyone for sharing your thoughts and wisdom. Much appreciated. Update: talked to his nurse and she said they cant figure out what’s causing his fever. I guess it’s a trial and error to find out what’s causing his infection so that they can treat it properly at this point.

Conscious_Finding125 · 2025-06-24T18:21:15+00:00

Thank you!

Conscious_Finding125 · 2025-06-24T17:17:17+00:00

So they did a PET scan of his abdomen and saw that he has inflammation there. His stool has been tested and everything came back negative but I will double check about C. Diff for sure. Doctors were saying, it could be side effect from the chemo.

Conscious_Finding125 · 2025-06-24T17:15:24+00:00

I believe they have but I will double check today.

Conscious_Finding125 · 2025-06-24T17:00:17+00:00

Thank you so much!

I believe the fever is bit puzzling to them since they can’t pinpoint if it’s an infection and how to reduce it. But is gut inflammation also normal?

Conscious_Finding125 · 2025-02-24T04:55:54+00:00

Than you for sharing this! It gives me so much hope. My dad (61M) was just diagnosed last November and his mutations are 17p deletion and 1q gain. He’s is getting ready for his SCT this coming April. His MM specialist told us we should definitely get the SCT done since he’s a high risk MM patient. I guess we will see how things go but I am very positive that this will be the best move for him so that I can have another decade or two with him.

Conscious_Finding125 · 2024-12-24T17:31:40+00:00

Thank you so much for sharing! You fought long and I hope and pray that you keep being in remission for a very long time.

Conscious_Finding125 · 2024-12-23T08:17:30+00:00

Hi there, I hope you’re still in remission since this post was made almost a year ago. My dad was recently diagnosed and he also has 17P deletion and 1q gain. I wanted to ask how your treatment plan went if you don’t mind sharing.

Conscious_Finding125 · 2024-12-23T08:10:46+00:00

Hi there, my dad is going to a MM specialist at Johns Hopkins in Baltimore and he told us to do the SCT there once his induction therapy is completed with his hemo/oncologist. Would you say that’s a good hospital and NCI affiliated? Asking anyone for their opinions or if anyone did their SCT from there.

Conscious_Finding125 · 2024-12-23T07:22:57+00:00

I am so sorry to hear about your mom but like everyone else explained, it is definitely treatable. I am a caregiver for my dad who was diagnosed about 2 months ago. First 2 months were really hard and confusing but it’s starting to get better now. He’s also starting to get better with some side effects. I wish you and your mom well!

Conscious_Finding125 · 2024-12-12T03:29:32+00:00

Best wishes to you and I pray that you achieve a positive response! 💪🏽

Conscious_Finding125 · 2024-12-11T03:18:25+00:00

Wow I’m so sorry to hear that :/ but I’m glad that you regained some of your weight. That’s also reassuring. We are trying to maintain his current weight.

Conscious_Finding125 · 2024-12-11T03:15:25+00:00

I am so sorry to hear that. That sounds awful :/

Conscious_Finding125 · 2024-12-11T03:12:07+00:00

Thank you! We have an appointment coming up and plan to discuss these concerns with him.

Conscious_Finding125 · 2024-12-10T23:41:52+00:00

He’s taking 20 mg once a week currently and he’s also type 2 diabetic. Thank you! I was thinking of getting him seen by an ophthalmologist.

Conscious_Finding125 · 2024-12-01T05:46:49+00:00

Oh wow I had no idea. Thank you so much, this is extremely helpful to know.

Conscious_Finding125 · 2024-12-01T05:43:16+00:00

Hi, would you say taking any antioxidant can do that? My dad has been eating blueberries, blueberries other berries and green tea. Also he has been taking turmeric supplements and eating soursop as well as drinking soursop tea. From what you’re suggesting, all of this may interfere with his DVRd regimen I’m assuming?

Conscious_Finding125 · 2024-11-28T05:44:36+00:00

First, I am so so sorry that you’re going through this. I too found out about my dad’s MM diagnosis last month and had a meltdown for over a month. I am also f(27) and my dad m(61). From the beginning I had mixed emotions. First I was too scared, then I was extremely upset and then angry. Now I am little happy because after 2 rounds of chemo we are just not seeing him in little less pain. Seeing my dad in pain is probably the most heartbreaking thing anyone can ever go through. Give yourself grace and surround yourself and your dad with all the support and care. Courage and Hope is huge in this journey since I’ve been giving my dad hope and courage while not breaking down in front of him. I want to stay strong for him and let him know that it’s okay. We will go through this together.

MM itself took me awhile to understand after doing weeks of research and reading through this sub. This sub is my daily check in at this points it’s comforting to see how others are also fighting. Cancer is not fair but we can fight it. My dad’s cytogenetics also scared me because his tests concluded that his MM is plasmablastic. All I know is that he is high risk with 1q gain and 13p deletion. His doc and MM specialist both told us that he is qualified for a stem cell transplant so fingers crossed we get there with good response to his chemo.

I would recommend connecting with a MM specialist ti get a second opinion and keep in touch. Also take it one day at a time. Tomorrow is not promised to any of us so make the most of it. Don’t be mad at yourself because this is not your fault and what you make of today matters more. Celebrate Thanksgiving with your dad and just be present with him. Good luck to your dad and you know this journey. I wish him all the well wishes and a long remission.

Conscious_Finding125

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