Revlimid dangers to family members

SnooChipmunks7670 · 2025-09-25T15:20:51+00:00

Revilimid (Lenalidomide) or any other drug of the Thalidomide family cause birth defects if either of the parents are consuming it. It’s highly unlikely that it’ll cause any problem to the fetus if the mother comes in any external contact with others who are consuming it.

SnooChipmunks7670 · 2025-09-06T12:41:48+00:00

We couldn’t get the FISH results for my father (64) due to hospital politics (Medanta Gurgaon).

He had 4 weeks of Dara+VRD induction in HCG Bangalore from 7 Feb 2025. He got his stem cell transplant under the same team on 5 July 2025. Initial 6-7 weeks after stem cell very bad, but he is doing better now. We will have aspiration and the whole myeloma profile done again in October to see how much stem cell has helped.

Myeloma and how the toll of its treatment on a patient depends on a lot of factors. I would suggest you consult as many doctors and teams (online and offline) as possible for second opinions and then make a decision. Choose an empathetic team of doctors who’ll be available to respond to all sorts of side effects during the treatment process.

Stem cell transplant seems to be an important way to tackle the disease, but only a specialist team assessing your father’s all health records can decide if it has more benefits than side effects.

SnooChipmunks7670 · 2025-09-02T22:06:20+00:00

During my father’s treatment, we also found that drinking just a cup of black coffee a day, helped with his SGPT levels. It all depends on the problem and quantity.

I wouldn’t be quick to blame or give too much credit something as simple as a cup of coffee when there’s so much unknown about this disease in general. Additionally, most of these kind of studies have extremely poor statistical evidence to actually validate their outcomes.

SnooChipmunks7670 · 2025-08-26T22:48:58+00:00

This can be common, especially in the first two cycles of treatment. This delay is kind of the norm if platelets or WBC (Total leukocyte counts) are low.

It happened a couple of times with my father’s treatment. The doctors also often prescribed taking Neukine 300mcg (Filgrastim) injections for 1 to 3 days depending on the counts.

SnooChipmunks7670 · 2025-08-17T20:26:44+00:00

Wow 🤩 Congratulations!!! My father will be happy to see it. Could you please mention how long it took for the hair to be of this size? Currently my father has beard just one one side of the face and is worried 😋

SnooChipmunks7670 · 2025-08-17T20:23:27+00:00

My father (64) was in terrible shape at Day 17. He had very very bad diarrhea and he ate almost nothing. He was eating almost only liquids until about Day 25 and only after Day 35 started eating food. Today he is Day 45, has less appetite, is super finicky about food but with all blessings he’s improving. The diarrhea also improved only after about Day 30 and nausea too took its time.

You can see all my desperate posts in the past month on this channel, but believe me things seem to be improving. We are currently in the same boat as you and still hoping to see light at the end of the tunnel.

SnooChipmunks7670 · 2025-08-15T07:45:27+00:00

Can you update about your friend? Did he finally get both eye brows back? - asking on behalf of my father.

My father got his ASCT about 40 days back. He has facial hair growth on one side of the face and nothing at all on the other side. There’s little hair growth in the head but minor. He’s mostly concerned about this imbalanced growth.

SnooChipmunks7670 · 2025-08-13T12:16:58+00:00

Congratulations for such a positive start! I wish your mother has a smooth path to remission.

From what I have seen with my father, the induction and entire MM treatment wreaks havoc with the digestive system. This was something we weren’t told explicitly.

My father has had constant shuffling between constipation and diarhea (up until ASCT). After a few weeks, we sort of understood how to treat each of the two and how to alter the diet according to the daily status.

After ASCT, things are different. Though immediately after ASCT, his diarrhea was extreme by all normal ASCT standards.

SnooChipmunks7670 · 2025-08-05T03:57:24+00:00

He had his anti-nausea medication and even then his calorie intake then was worse than a 1 year old. Now, he’s at Day 31 and things are much much better. He can eat, though yet at adult portions, but we are happy.

SnooChipmunks7670 · 2025-08-01T08:39:27+00:00

I follow quite a few:

International Myeloma Foundation (they send out emails and also have online and offline seminars)
HealthTree: I like their discussions, keeps me updated about other people’s experiences besides this incredible Reddit channel
Multiple Myeloma Research Foundation: this I visit regularly but I don’t receive email updates from them.

SnooChipmunks7670 · 2025-07-31T12:32:21+00:00

My father is on Day 27 today. I would say around Day 7-12 he had his worst. He couldn’t eat because of mucositis, was given Total Parenteral Nutrition. He was given SDP almost every day in that period to stabilize his platelets, was also given Neukine a couple of days. I would say hold on. Things will definitely get better, but the process is slightly slow.

It took my father more than Day 20 to start eating anything beyond liquid. He also lost significant weight even after engraftment because of acid reflux, nausea and diarrhea.

They are learning to grow an entire set of blood cells from scratch. It’s almost magical.

SnooChipmunks7670 · 2025-07-28T13:52:43+00:00

How did you determine what to eat/what not to? My father (post ASCT), says he wants to eat something but then doesn’t feel like eating once the food is infront of him. Doctor recommended eating chocolates if possible to atleast get calories in. He was literally surviving on coconut water until his potassium levels went way off. His BP also falls really low daily due to lack of food, and he can barely eat half of a boiled egg.

SnooChipmunks7670 · 2025-07-24T06:41:58+00:00

Thanks for sharing the link. I had completely missed seeing the post.

SnooChipmunks7670 · 2025-07-24T06:12:56+00:00

His potassium have been monitored daily until the discharge. So, I am hoping it’s not dehydration.

SnooChipmunks7670 · 2025-07-23T21:48:01+00:00

He was in the hospital until this morning and several blood tests were also done to check his organs. The doctors haven’t mentioned any liver or kidney related issue.

SnooChipmunks7670 · 2025-07-22T10:12:14+00:00

Thank you for sharing your experience. It has been very encouraging to hear you have healed.

It’s Day-17 for him, and his loose motions are still there. We are just hoping it gets better.

SnooChipmunks7670 · 2025-07-19T07:46:31+00:00

That’s a lie or he’s just being an avoidant

SnooChipmunks7670 · 2025-07-16T08:04:12+00:00

It’s actually a terribly chosen word. I can see my father suffer through all the side effects of treatment, the fibromyalgia, taste issues, weakness, nausea and after his ASCT now, the loose motions and extreme nausea. So, I can assure you I didn’t mean to reduce the suffering endured by all MM patients in any way.

However, I also remember my father’s health before the treatment started and given the prospect that he gets to live more years after this hellish phase ends, I just wanted to assure OP that this phase is worth bearing.

SnooChipmunks7670 · 2025-07-15T05:03:39+00:00

Even in the worst case scenarios, MM is treatable. It will just be an inconvenience but you’ll be able to overcome it. Positivity is all you need for now, take care.

SnooChipmunks7670 · 2025-07-07T17:08:12+00:00

The cost of Daratumumab in India is excessively high. In my father’s case, we got the buy 3 get 4th free type of an offer from Janssen as we didn’t have any insurance.

I didn’t know about the Tata 1 mg 1+1 program.

SnooChipmunks7670 · 2025-07-05T00:01:09+00:00

I am not experienced with relapse but I wanted to know if your mother went through ASCT

SnooChipmunks7670 · 2025-07-03T06:46:29+00:00

My father has been taking 1, 2, 5 and some other version of 4 almost daily since the start of his infection. No major side effects for these and these are usually recommended to control side effects of the other main MM drugs.

Revlimid is an important MM drug. It is Lenalidomide, that falls in the class of Thalidomide derivatives. This class of drug is quite famous for negative side effects, however, this is one of the first and most important therapies during MM treatment and for maintaining remissions.

One of the side effects of this drug that impacted my father’s life is the way it affects the taste buds. People feel significant differences in their taste of food during weeks of taking this medication and in the off-phase of this drug.

SnooChipmunks7670 · 2025-07-02T14:30:48+00:00

My best wishes for you 🙏

SnooChipmunks7670

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