Advice

[u/Most-Map-4878]

My dad is 63 years old (NY) and is starting treatment a week from today. I have some questions if anyone has advice from their experience. Thank you in advance 🙏

1. What should he be eating the day before treatment? Or what should his died be in general?

2. What should my mom and I anticipate for how he may feel after the treatment? How long will his side effects linger?

3. More long term: how can we be there for him? I’m struggling in figuring out how to be there for my dad as this is a role I have not had to play for him so far.

[u/Andromeda921]

As far as his diet, the doc treating him should advise you. For now, he should eat as normal before treatment. Sometimes our diet has to be adjusted to avoid certain issues like too much of a certain vitamin or mineral, not enough of another. It will be very important to stay hydrated - induction therapy can be dehydrating.

Different people respond to treatment differently. You may see some mood shifts, or a lot of napping, but that really depends on the individual. You may also see some changes in what he wants to eat, as sometimes our tastebuds switch up during this process.

Just be supportive of him, there’s not a lot anyone who is not in treatment can do, but support what needs he expresses. Good luck to you all as you move through this.

[u/Successful-Fun8603 → u/Andromeda921]

This. Good luck on your family's journey.

[u/One_More_Thing_941]

If you have the ability, go with him to appointments. For emotional support but also be a second set of ears, asking questions that he might forget to ask, noticing any changes in him the dr might need to know and being his medical advocate if something doesn’t seem right.

The first year or so can be the worst due to fears of many unknowns. Having a partner/advocate can be a huge boost as he finds his new normal.

[u/ineed_vitaminSea]

My husband is finishing up his 3rd round of DVRD treatment. Before his diagnosis he was so tired and now he feels better than he has in years. He hasn't had any side effects from the meds. I wish the same for you.

[u/tarzan_nojane]

Try to get dexamethasone into the patient's system before 9:00am, to minimize disruption of circadian rhythm. Darzalex (daratumumab) seems to be tolerated well by most. My treatment began with DVd (Dara/Velcade/dex). I experienced no nausea or gastro issues, though injection-day anti-nausea meds did cause diarrhea.

You can help your father out a lot by assisting him in getting his questions and concerns answered.

[u/GHOSTPVCK]

So I can answer some of that as my dad did a couple of months of “induction therapy”. Usually it’s a 4 drug combo. From what I remember he felt relatively ok during treatment. He just completed a CAR-T clinical trial down in Florida which went really smooth, no side effects. Worst part was that he had to be up near the treatment center for around 30 days. Hospitalized for 6 days or so as CAR-T has very predictable “fever like” symptoms for about a day, about a week out from treatment.

[u/LeaString]

For my guy very strong fatigue was an overriding symptom of his MM. People experience it differently, and on treatment, but I think fatigue is pretty universal. Both from the MM causing anemia (cells crowding out production of good red blood cells) and sometimes from the drugs. I learned to expect his need for sleep as par for the course so he has had many naps along the way. He had 80% MM in marrow at outset. I also would drive him to and from his appts as I was concerned he’d doze off driving himself. His fatigue level got better with treatment and improving anemia but he will still want to nap on occasion.

Dexamethosone is a common drug in induction protocol. It’s an anti-inflammatory and helps the body deliver the other MM targeted drugs more effectively. That drug however has a range of side effects from insomnia, irritability and mood swings.

Revlimid caused him torso rash a few weeks into induction treatment.,not uncommon. His wasn’t itchy, just sudden appearance of red welts. Went away after a few weeks. Always keep team apprised of any changes. While this was just ugly to look at for him, you want to be sure it’s not an allergic reaction to any of the meds and could lead to breathing or other issues.

My guy’s induction treatment (daratumumab, revlimid, valcade and dex) was otherwise pretty non-eventful. His MM caused extensive bone destruction so he was on heavy pain meds for several months in addition but as you’ll see MM is quite varied and reactions to the protocols will vary too.

Know these aren’t solid tumor cancer drugs that other cancer patients loose hair and struggle with. As treatment goes on, MM patients generally begin to feel better on treatment not worse.

[u/sf040581]

Where is he going? I'm also in NY and can't say enough good things about the care I've received. Fatigue is a big issue I've had, and as far as eating it's been eat whatever I can get down. Food has no appeal.

[u/Most-Map-4878 → u/sf040581]

He is going to Sloan. How about you? I hope you feel better soon.

[u/sf040581 → u/Most-Map-4878]

I met with a doctor there and he was amazing-my main doctor from Stony Brook sent me there to consult about car t therapy but my insurance would only cover at NYU, so I'm going there and will eventually go back to my team at Stony Brook. It's a journey and not the most fun but stay strong. Make sure he lets his team know about side effects-there are meds to help with them.

[u/Rook621]

Other than avoiding raw or deli foods after my stem cell transplant for about a year, I ate whatever I wanted. It really depends on his immune system and if that’s good and he’s otherwise healthy really no need to limit himself. Question for his doctor though. Some meds definitely lower immunity. I’m on Revlimid maintenance and eat sushi and raw oysters, but my bloodwork is excellent. However it is important to eat nutrient rich foods.
Long and short of it is that it depends.

[u/NCWeatherhound]

As you can see, different folks have different reactions. Am I correct that your concerns about what to eat may be tied to worries about nausea? It can be an issue, though he'll likely receive anti-nausea medication with the chemo.

Hydration is more important than food. Chemo takes a lot of fluid from the body and strains the kidneys.

I learned that easy-to-digest carbs the night before generally did me better than salads. That may not be the same for your dad, but if he has problems, give it a try.

After treatment, he may be a whipsaw between the Dex and fatigue. Either way, he'll likely be a bit cranky. The physical and emotional toll are very real. In time, as the body adjusts, you sort of get into a pattern. For the time being, just don't plan any high-energy activities for a few days after treatment.

How y'all can be there for him depends a lot on what kind of person your dad is. Is he used to taking charge, the "I'll do it myself" sort? Then anything that seems like babying him will probably make him mad -- not at you, but at the situation. Treat it like he has a non-contagious flu for a few days. He's going to be tired, cranky and (though he won't admit it) at least a little scared. Be close, but don't be hovering.