@A MyMyelomaTeam Member I sense slight panic and bewilderment in your thoughts and writings. Please do not worry and relax. Since I am the honorary consigliere of the South Philadelphia Mafiosi I will tell you to be like a Mafia wife and don’t ask any questions.

Are you smiling or laughing out loud?

We (my wife and I) have been in your position exactly. Last year our heads were spinning. It took a lot of self instruction to get where we are and we’re still in the woods of knowledge.

Before I proceed let me say I believe you are now going to get a belly shot of Daratumumab or aka Darzalex FasPro. That along with the Velcade, Dexamethasone and Revlimid gives you the famous QUAD COCKTAIL! The gold standard of treatment. More about that later.

Do not panic! Much of what you need to know should be provided to your cell phone via something like MyChart. I am enrolled into my records from Jefferson Hospital and see Test Results, Visits, Inbox and Medications. I can schedule, change and view past visits and all the notes associated. I can reorder medication and communicate with staff via the internal email. And test results are the beautiful feature. While I’m sitting waiting for chemo I see my blood results before the doctor comes in the room!

It is from test results that I learn the most. Interpretation is another story! You have to do your own research because your doctors are too busy with this epidemic to instruct you! They are not going to answer many questions as they are not about to hold MM 101, 102 and 103 for you. And the NP’s don’t know! My NP had to go to the next room where my main oncologist was zooming a patient 3 times to get answers.

That said, let’s look at your case. (You would be talking to Dr. Parker but Mom and Dad didn’t have the money and I faint at the sight of blood. It’s true. The doctors let me cut the umbilical cords of my two kids and I fainted both times).

Your 2 new lesions and T4 growth are a result of too weak of treatment regimen in my humble opinion. You should have begun indoctrination therapy with 25mg Revlimid two weeks on two weeks off, weekly Velcade, weekly Darzalex and 3 Dexamethasone pills the day of chemotherapy and an extra one the next day. This along with daily pills to prevent shingles such as Acyclovir and a bone strengthening shot like Xgeva every 3 weeks. If this was performed you may have been closer to remission.

Now I’m not second guessing your doctors but the fact they are now going to add 30,000 units of Dara tells me they underestimated the aggressiveness of your condition.

Thats ok. It’s almost more of an art than science.

You are in good hands and do not think of second opinions or new locations.

As far as all the technicals you will need time to study and you’ll need the data. It took me months to find that I have IgG Kappa Light Chain. Now you should hear my wife (she’ll be 69 on February 15) explain light chain and heavy chain to family and friends.

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A MyMyelo...

Let me be sure I understand you. When you say 4 chemo session does that mean the quad cocktail of Revlimid, Daratumumab, Velcade and Dexamethasone? Or does it mean 4 cycles (16 weeks) of the quad cocktail then the SCT then another 16 weeks?

For example, I had 16 weeks of the quad then the SCT then monthly maintenance for another 16 weeks after the 100 day SCT recovery period. A grand total of one year of being blasted by chemicals finally got me into remission yesterday!!!

My MM is aggressive and I’m high risk. So I think your brother will be just fine.

Like the Wicked Witch of the West once said, “all in good time my pretty, all in good time!”

Mark I've not been on the site much in the last several days because it can be a bit overwhelming to me especially reading comments from very experienced people like yourself . I admire you from afar. Like Sandeep, I'm very concerned about my future and longevity of this disease and quality of life. I'm 69 and have been treating for MM one year. I was stable for about 8 months but my recent Pet Scan this past week revealed 2 new very small lesions and my initial cancer at T4 has grown a tiny bit. One of my biggest complaints is nothing is explained to my satisfaction by the NP at the cancer center I go too, yet highly reputable and patients are treated well there. It could be just my teamof NP but I don't care for any of the 6 that I see through rotation. I rarely see my oncologist because I'm not considered that sick I guess. I do not know what kind of MM I have. I just learned from this site that there are different kinds. I do not know the stage I was initially diagnosed because my oncologist said he didn't go by stages, but went by my blood work. I treat every week. I'm on Revlimid (10 mg) Velcade, Dex 2.5 every week at 5 mg) and bone infusions (1x month). Since the new pet Scan revealed new lesions and growing of the initial lesion, I am starting my 4th new drug this Thursday but don't recall the name but I believe it started with a "D".
I am on my own and my daughter lives 3 hours away has a toddler, and works full time. I have posted my concerns about where I am getting my treatment from a week or so ago but there are obstacles in going to another facility and likely would be 2 hours away ( UAB) (University of ALABAMA Birmingham).
It would be a hugh hardship having to go there every week. I see through all the reading of comments people go to more than one place to get treated. I don't quite understand that part of the treatment process. I hope you can shed some light on that. I would like to get a second opinion but not necessarily treat at another facility unless of course it proved to be most advantageous. I mainly want better information when I go to my appointments to see the oncologist or NP. I want better discussions. I want to be able to ask questions and not be rushed. When I saw the NP for the results of my recent Pet Scan, she only told me the bare minimum of what the report said and that I would be put on another drug. She didn't explain what this really meant in the big picture, what to expect, what the goal would now be, etc. That may sound obvious or generic however she offered nothing but a quick chat and basically rushed out the door. This is the norm. The facility is great in every department. I have few complaints. It's just the lack of effort demonstrated from over/worked NP from likely too many patients. My present oncologist deals with alot of MM patients but he technically is not a MM specialist. Your thoughts.

Ok. I will tell you when it’s time to worry. It’s time to worry.

Ok. Let’s go over specifics. His first round of 16 weeks; was it 25 mg of Revlimid 2 weeks on, two weeks off? Was it a shot of Velcade in one side of the belly and a shot of Dara (Darzalex Faspro) on the other side every week? Did they give him 3 little Dexamethasone pills with the shots and an additional pill the next day at home?

Then, as you say, the ASCT and 100 days of recovery.

Then a maintenance period of 16 weeks consisting of 21 days on, 7 days off of 10 mg of Revlimid pills in association with a monthly Darzalex shot and monthly Dexamethasone. Does that sound about right?

I have IgG Kappa light chain. Do you know what he has? Does he have any pain? I would expect him to be tired, fatigued and get winded easily. But that’s normal. Blood work should show low RBC and possibly low WBC and hemoglobin. What do the numbers show?

He’s only 44. A young tender. He should be responding more favorably. Is radiation in the picture? Maybe blast areas of infection externally. Also, since it is so aggressive has there been discussion of a tandem or back to back ASCT? I am getting that next month.

Tell us more. Is his oncology team reaching out to get external input from other medical professionals?

My 32 year old daughter has been to India (Vrindavin) 5 times and says, “Dad, chalo chalo”

Tell the doctors chalo chalo and get on the stick here! He needs an alternative treatment.

But in any event, do not panic. There are many paths to relative health.

To be honest I’m at the end of my limit of knowledge at this point but am extremely interested in his progress. Keep us posted.