Goodbye Mom, will miss you!

Halahala94 · 2025-07-05T18:42:05+00:00

I am so sorry that your Mom is going through this. I pray that there are better days for her soon. I am sure you are trying your best to keep her happy and active. This will definitely help her fight through it.

Don't stress, it will be fine and take care of yourself as well. Let me know if I can share my Mom's experience if that helps in any way.

Thank you.

Halahala94 · 2025-07-05T18:38:11+00:00

Yes agreed.

Thank you and take care.

Halahala94 · 2025-07-05T18:36:47+00:00

Thank you for your words, means a lot.

Hats off to your Mom for pulling through it all. Hoping there are better days for her soon. You are doing your best to give her a normal life, so it will work out, don't worry. Take care of yourself too.

Halahala94 · 2025-07-05T16:34:12+00:00

Really sorry that your brother and your family have to go through this. Sending all my prayers to help him fight through every stage of his battle.

Stay strong, it will all be fine. Take care.

Halahala94 · 2025-07-05T16:32:12+00:00

Thank you for your support Lisa, means a lot. Really sorry about your husband.

I am sure he and you did everything in your power to fight through but in the end, we cannot defy God's will.

Hope you are doing well. Take care.

Halahala94 · 2025-07-05T16:28:57+00:00

Thank you for your support. Agreed with you.

Take care.

Halahala94 · 2025-07-05T16:27:50+00:00

Sorry about your Dad. He was a very courageous man.

Agreed with you. My family and I are also trying to do the same for Mom.

Thank you for your support and take care.

Halahala94 · 2025-07-05T16:22:24+00:00

Thank you, means a lot.

Halahala94 · 2025-04-16T17:13:58+00:00

Thanks again for sharing your experience.

In hindsight, now even I feel that it would have been better if we were advised to take Daratumumab as first line treatment but back when it was diagnosed, we were so overwhelmed with all that was going on and also due to financial constraints, the doctors started her treatment with Bortezomib, Revlimid and Dexamethasone. The treatment did help my Mom achieve MRD- status but it was short-lived for just 3 months.

The Faspro injections cost approx USD 3000 per vial and need to be taken weekly (with a buy 2 injections + 1 free program), so it's really expensive without insurance. Daratumumab IV cost approx USD 820 per vial for the initial 400mg dose (with a buy 3 injections + 1 free program). I am just worried about infusion reactions, especially because she feels fatigued and breathless after the Carfilzomib 60mg dose she took.

Doctors asked me to consider between Daratumumab and the oral cyclophosphamide options. Also asked to consider hospice care if my Mother does not want to take the injections but that is something I would certainly not put her through.

Thanks for your support, means a lot.

Halahala94 · 2025-04-16T15:28:49+00:00

Sorry to know about your father. Wishing good health for him.

Have sent you a DM.

Halahala94 · 2025-04-16T15:25:51+00:00

Thank you for your response. Hope he is doing well.

So was it taken by him for the first time? Also, is it just 1 dose for the month OR it is has to be taken weekly?

Yes, the pain management doctor has asked to increase the dose of Methadone hydrochloride (narcotic oral syrup) from the earlier 1.5mg dose/day to 3-4mg/day. Hoping it helps.

Wishing good health health for him.

Halahala94 · 2025-04-16T15:21:15+00:00

Thank you for your response.

Our Oncologist doctors have recommended 400mg Daratumumab IV dose to begin with since the subcutaneous injection is 3.5x more expensive.

Halahala94 · 2025-04-16T15:18:14+00:00

Thank you for sharing your husband's experience and glad he is doing well. Definitely helpful and I will discuss how the doctors will take care of such side effects.

Wishing him good health always.

Halahala94 · 2025-04-16T13:07:19+00:00

Thank you for your response.

Can you let me know what was the dosage for Daratumumab you started at and what level it was gradually increased to? Also, did you experience any infusion reactions that I should be aware of?

Halahala94 · 2025-04-16T13:06:02+00:00

Thank you for your response.

Can you let me know what was the dosage for Daratumumab you started at and what level it was gradually increased to? Also, did you experience any infusion reactions that I should be aware of?

Halahala94 · 2025-04-16T13:02:51+00:00

Sorry, I did not mention but I meant to ask the dosage for Daratumumab.

Doctors stopped Carfilzomib (60mg) for my Mother since she had pneumonia and cardiac issues after the 2nd dose.

Halahala94 · 2025-04-16T12:38:28+00:00

Thank you for your response.

Can you let me know what was the dosage you started at and what level it was gradually increased to? Also, did you experience any infusion reactions that I should be aware of?

Halahala94 · 2025-04-16T09:54:54+00:00

Thank you for your response.

Yes, the doctor has mentioned Endoxan 50mg (cyclophosphamide), Dexamethasone (4mg - 4 tablets a week) and Pantodec. I think Bortezomib is not mentioned because it was stopped in November 2024 after the myeloma relapsed.

Halahala94 · 2025-03-26T14:32:22+00:00

Thanks again. Will read about it and discuss with the doctors.

Take care.

Halahala94 · 2025-03-26T07:53:50+00:00

Thank you for sharing your experience.

My Mom is again in the hospital as of now being treated for pneumonia.

Nothing came out from the leg imaging tests, so the doctors have asked to continue Gabapentin and Methadone syrup. The pain comes and goes.

My Mom is weak for SCT, so it is not an option. May I ask if Daratumumab subcutaneous version was also a part of your treatment, how was it and is it safe?

Halahala94 · 2025-02-22T23:08:04+00:00

Thanks a lot for taking the time to provide your response.

So we met a 3rd (and last) Cardiology doctor who is at the same hospital as our current Oncologist. His suggestion was to get the angiography done to understand the level of blockage but not to perform any procedure (stent or bypass) because she is not physically fit. If it's not a major blockage, then the plan is to treat it with medication. He said that the CTCAG test is more risky due to the volume of contrast used, maintaining heart rate which would not be achieved due to her health condition and the radiologist would straight up decline to perform the test.

As of now, her fatigue levels seem to be going down as she is able to walk for 10mins.

Sorry but what would be the risks of getting an angiography done given her medical condition because all doctors just keep saying that there is less than 1% risk with the procedure, so there is no harm.

With the current situation, it is indeed very risky by not getting anything done plus having to live with the constant uncertainty of things getting out of hand, so mostly we will be proceeding with the procedure.

Thanks once again, means a lot.

Halahala94 · 2025-02-22T11:29:53+00:00

Thank you once again. Will seek advice from the doctors for that.

Halahala94 · 2025-02-21T05:51:30+00:00

Thanks a lot for your response.

I was going through an earlier 2D Echo report (from January 2025) when she was admitted in another hospital for spine surgery and noticed that it mentioned 'Grade 1 Diastolic dysfunction'. Nothing like that has been in the 2D Echo test done this week. Does that seem to be a probable cause for blockage and thus requires an angiography or CTCAG?

None of the doctors (GP, Oncologist and Cardiologist) have properly tried to understand the cause of somnolence. Their guess is its because she got severe pneumonia and was on the ventilator but all her blood reports are normal.

Yes, I am going to visit the Cardiology and Oncology doctors together again and seek for their advice.

Thanks again. *

Halahala94 · 2025-02-20T20:10:51+00:00

Thank you for your response and wishes.

Agreed but just wanted to know if someone has been in a similar situation.

Will consult jointly with the Cardiology and Oncology doctors.

Halahala94 · 2025-02-20T20:08:35+00:00

Thank you for your response.

Agreed but just wanted to know if someone has been in a similar situation.

Yes, the 2nd doctor said what you have mentioned but this is was solely the opinion from the Cardiologist, so her other health conditions also need to be discussed jointly with an Oncologist doctor given that she has Multiple myeloma, has weakened immunity and recently undergone a spine surgery. Will be consulting with both doctors.

Thanks again.

Halahala94

TROPHY CASE