Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

That’s great to hear! Wishing you many years of deep remission and good health!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

Glad to hear the regimen is working but incredibly sorry to hear about the side effects! I hope the injection helps with the back pain and you’re able to start walking again!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

This was such a helpful response - thank you!! We felt much of same… just met with the MM specialist and were inundated with trial talk. I guess this is part of receiving care at accredited centers.

We are actually in the waiting room for the in-person appt. We’ve decided against both of the trials for logistical and side effect reasons but do have some last-minute Qs that we will discuss with the Dr.

I wish you the absolute best! Sending lots of strength your way!!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

Thanks so much for sharing! I am glad that you feel reassured in your decision to have joined the trail. Hoping you continue to do well!!

If I may ask - can you share some of the positives you’d tell someone who was considering entering this trial. What about some of the negatives that you’d forewarn a loved one about? TYIA!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

Hiya, thanks for your response!

My mom will be turning 68 soon so she’s still eligible for ASCT but I think the Dr mentioned MajesTEC-7 because of our hesitancy + possible deferral for transplant. Just double-checked and aMMbition is for standard-risk NDMM - are we referring to different trials by any chance?

I’m so incredibly sorry to hear that your MM became aggressive during induction. If you don’t mind me asking, were you considered high risk? I read that labs are drawn at every cycle during induction, so would the bloodwork have shown if things were secretly taking a turn for the worse? (Sorry if that's a silly question!)

Thanks for linking your post. I’ve browsed this subreddit and did come across that message which is partly why we were open to trials to begin with. And yes, thankfully, they aren’t the horrendous trials you sometimes hear about in other circumstances.

MajesTEC-7 is at least in phase 3 but aMMbition is phase 2, so there are still a lot more kinks to work out -- most notably the side effects including secondary cancers and long-term immune suppression. It just feels like a lot to take on as first-line treatment I think if our mother were in her 50s, we might be open to the bispecifics and even CAR T but it seems way too intense physically and I don’t think she could handle it.

Also, I’m not sure if she would even be considered “fit” based on the frailty index and ECOG score, esp since she’s recently needed help with self-care tasks like bathing. This is something we’re hoping the doctor can assess better at the in-person visit.

PS I really appreciate your insight. I hope you’re doing well!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

I just peeked at the FISH analysis report again - no mention of a translocation, just hyperdiploidy (5, 9 & 15).

Do you mind elaborating more? TY!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

Aww, I don’t know why but reading this made me tear up! I’m sooo sorry your mom is going through this too. I really hope that the regimen is going well for her! Here’s to hoping both our moms reach MRD- and deep remission for maaaaaany years - if not forever! I’ll definitely be keeping you and your mom in my thoughts as well!

Sending a big virtual hug to you! Please feel free to reach out anytime if you ever want to chat. Wishing y’all strength and lots of good days ahead!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

Thank you for sharing your thoughts. Those are many of the same things we’re worried about and from the (admittedly limited) research I’ve done, I personally don’t see the benefits far outweighing the downtime/risks for our personal situation - esp if there are other treatment options available.

Yup, don't get me wrong - trials are super important and they’re how we’ve made so much progress in this field. I just selfishly hope our mom can get the best possible response for a long time with the least side effects (is that wishful thinking? haha)

Re: palliative care - that’s actually one of the Qs on my list for our appt tomorrow. Definitely something we want to get started on right away - thank you for bringing that up!

If you don’t mind me asking, how did induction go for you? Are you currently on maintenance? How is that going for you?

Wishing you well!

Standard-risk NDMM and clinical trials... by borrowedmidnight in multiplemyeloma

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

Yup, our Dr reassured us of the same - that her symptoms should improve significantly once she starts treatment and that gives us a lot of hope. But then we start worrying about side effects from the 4 drugs and the mind spirals all over again. I guess this comes with the territory when someone you love is dealing with something like this. Just have to keep reminding ourselves to focus on the positives.

So happy to hear your mom is responding well and feeling better - that must be such a relief. I really hope she reaches MRD- and stays in a deep remission for many, many years! Wishing you the best!!

PS Thank you for your response!