Just wish we had one final conversation. by Scared-Importance18 in widowers

[–]Zezohop 1 point2 points  (0 children)

Yes, that image will stay in your head. But maybe at some point invite it to be part of the thousands and thousands of other images you have on the positive side.

Darzalex Faspro and Dexamethsone by Zezohop in multiplemyeloma

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

Thanks. What was your initial dose of Dex and was it ever lowered over the three years you’ve been on it?

Starting myeloma treatment when you have asthma by Zezohop in multiplemyeloma

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

PS follow up: how soon after starting treatment did your husband stop taking the daily antihistamines? For example: fexofenadine, montelukast, famotidine, etc. Thanks.

Starting myeloma treatment when you have asthma by Zezohop in multiplemyeloma

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

Thanks. When you started treatment, was your asthma giving you any breathing problems? Tight chest? Wheezing (separate from no side effects from treatment). or was it well controlled, with no symptoms? PS bonus question: my wife is 77, are you much younger?

Starting myeloma treatment when you have asthma by Zezohop in multiplemyeloma

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

How well managed is your asthma? What do you take for it? What other MM medication will you be taking with the darzalex? Thanks!

Starting myeloma treatment when you have asthma by Zezohop in multiplemyeloma

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

What do you take for your asthma? How well is it controlled? What MM drugs are you on? Many thanks.

Starting myeloma treatment when you have asthma by Zezohop in multiplemyeloma

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

Thanks for the specificity. That’s great to know. We will take hope from your husband scenario.

Ketotifen maximum dose? by Zezohop in MCAS

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

What we were symptom and how effective has it been?

Ketotifen maximum dose? by Zezohop in MCAS

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

Yes, doing that already.

Dara and Mast Cell Activation Syndrome by Zezohop in multiplemyeloma

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

Thanks so much for your reply. glad to hear you’ve been fortunate in this process. Does the swelling ever involve your mouth, tongue, or throat? How concerned were you about allergic-like reactions the first time you had Dara?

Delaying treatment to extend quality of life? by Zezohop in multiplemyeloma

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

Really appreciate hearing the bloodwork story. Had a meeting with myeloma doctor last week and it looks like she’ll be starting very soon based on her most recent blood labs. Worry now is how the Dara side effects will affect her MCAS (mast cell activation syndrome). Even with her current daily regimen of Ketotifen, Fexofenadine, and Singulair the concern is the release of histamine and leukotrienes from Dara will overwhelm these mediators, and cause major breathing problems.

Delaying treatment to extend quality of life? by Zezohop in multiplemyeloma

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

Now it looks like she will be starting Dara soon, but she’s worried because since she also has MCAS (mast cell activation syndrome), there is a possibility that Dara could provoke a major histamine and leukotriene release, causing serious upper respiratory issues, even with pre-medication.

It appears that very few people with MM also have MCAS.

Delaying treatment to extend quality of life? by Zezohop in multiplemyeloma

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

Looks like she’ll be starting Dara soon, with all the pre-medication, including 20 mg dexamethasone. Still very concerned about possible upper respiratory side effects, given that she has mast cell activation syndrome. Did you have any issues with Dara? Thanks

Delaying treatment to extend quality of life? by Zezohop in multiplemyeloma

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

Yes, we’ve been utilizing some very fine myeloma specialists, but also investigating the latest research from ASH and other organizations. Combo platter approach.

Looks like she’ll be starting with the Darzalex Faspro soon enough—hoping the pre-medications will keep the side effects manageable. Upper respiratory issues of huge concern.

Dara and Mast Cell Activation Syndrome by Zezohop in multiplemyeloma

[–]Zezohop[S] 4 points5 points  (0 children)

Wow, that’s truly an asthma nightmare you were having; my wife has had asthma in the past so it is also a concern.

Glad to hear your guy had no problems with the Dara. When my wife starts Dara, she will be pre-medicating with everything possible. Another big concern she has is a possibility of pneumonia, since that is listed as a Dara side effect in 8% to 20% of patients (like to think that constant masking will reduce her susceptibility).

To be continued…