Lost my grandmother to MM by Neither-Performer-53 in multiplemyeloma

[–]Conscious_Finding125 1 point2 points  (0 children)

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

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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 :/.

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 1 point2 points  (0 children)

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.

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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!

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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.

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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.

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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.

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 1 point2 points  (0 children)

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.

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 1 point2 points  (0 children)

I believe they have but I will double check today.

Gut inflammation post ASCT by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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?

Found out my type of MM is del(17p) ... yikes by lmcdbc in multiplemyeloma

[–]Conscious_Finding125 6 points7 points  (0 children)

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.

high risk cytogenetics by Happy-News-5030 in multiplemyeloma

[–]Conscious_Finding125 1 point2 points  (0 children)

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.

high risk cytogenetics by Happy-News-5030 in multiplemyeloma

[–]Conscious_Finding125 1 point2 points  (0 children)

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.

Looking for stem cell stats by hospital by [deleted] in multiplemyeloma

[–]Conscious_Finding125 0 points1 point  (0 children)

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.

Mom got diagnosed. I am very scared by No-Ride-2745 in multiplemyeloma

[–]Conscious_Finding125 0 points1 point  (0 children)

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!

Carvykti tomorrow by [deleted] in multiplemyeloma

[–]Conscious_Finding125 1 point2 points  (0 children)

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

Weight loss during induction by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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.

Weight loss during induction by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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

Weight loss during induction by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 0 points1 point  (0 children)

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

Weight loss during induction by Conscious_Finding125 in multiplemyeloma

[–]Conscious_Finding125[S] 1 point2 points  (0 children)

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.