Want to talk about Multiple Myeloma: Anyone else?

I have the most common IGGKappa. The first time I was to get Revlimid but lots of side affects and had 2 PEs and a DVT before huge copay and deductible in drug plan. Change was made to Darzalex and was happy with that as went into remission and in maintenance but think they overlooked the rib that had shown up in a CT when first diagnosed and no follow up PET as my MRD numbers were so good. Perhaps should have asked for one but did not as thought I really had a lung issue. My mistake. I worry because weeks are going by that could be used to hopefully get back into remission. I was not sure where the prescription would go as my part D plan is with a Florida company and had the original Revlimid prescription from last May but no new one although may not always use the same one? Have no clue. I just wasted so many weeks and my myeloma numbers continue to rise. Hope something changes soon. The one bright spot is likely not to be addicted to opioids that they wanted me to use in rib, as they make me nauseous and I throw them up and was told dexamethasone causes insomnia but whenever I use it I sleep through the night. Just read about the settlement. Best book I read on that debacle was “Pharma” by Gerald Posner. Read before I knew I had myeloma and thought thank heavens I am pretty healthy and mostly vegan. Hmmmph! Caught in the drug insurance nightmare. There is now a generic available in Europe but will not be marketed here until 2026. Think might be a few companies here but obviously not really too available.

Oh dear, I’m so sorry this has been such an ordeal for you. Waiting is the worst especially when you’re feeling the pressure of time. But this is still manageable and treatment is just days away. There is no need to be desperate. You have a plan and it being put into motion. In a few days you have an appointment with the new doctor/clinic and I believe things will move quickly in your favor from that point on.
When you say Bio has no prescription, I don’t know what that means. Is this the new company who will provide the Revlimid?
What type of MM do you have? Is it light-chain MM?

Hi @whom1998. Thought I’d pop in to see how you’re doing today. Getting ready to be discharged?

So far Bio has no prescription. Then 3-5 days for insurance then 2-4 to get so looking at a week minimum and the cancer is raging. Do not think Velcade is working. Desparate. Seems a horrible process and very stressful.

We are at the airport and waiting to board. We go to Minneapolis then LaGuardia then home so getting in around 8:30. Lose an hour as well since central to eastern time. Tomorrow in for the Velcade which must not be working too well with all the damage. Not sure if a zometa day. Do not think so. Says 4-5 days for Revlimid so hoping to have by Monday. Guess has lots of side effects including rash. Hope I avoid all of them but not likely. I will be using my own cells. Have 3 sisters but guess no need for testing them. Just hope back in remission fast since want to have it ASAP. What if that does not happen? Getting the maximum dosage. Says 3-4 months if works. I could have had this last Fall with no damage, I know. The past!

It’s great you have an appointment next Tuesday to get this next phase into action. You can say goodbye to the old clinic that left you with a bad taste in your mouth. 🙃 This is a good, fresh start for you, armed with a new treatment plan to get you into remission! Then you can progress with the stem cell transplant.
Do you know if this would be using your own cells or an unrelated donor?

For now, just try to relax. The shuttle will get you to the airport on time. I know this is an anxious time. Traveling always is. You’re at the mercy of someone else to take control. But these shuttles do this all the time and you’ll get there in plenty of time to make the flight. Try to find something positive in your visit, not ‘how many more horrible things can happen’. My mom used to tell me, “If you keep looking for trouble, it will find you. So look for something better!” She was right!

How long is your flight home?

Hope a transplant is sooner rather than later!

I only thought about staying in the middle of last night. Emailed them but not an option now. Am always too tired now to make rational decisions. Waiting for shuttle to airport. I am changing doctors at home although still with same health system. Have an appointment next Tuesday. I have to go tomorrow for my final Velcade shot at the old place. Hope to never see it again! Just hope shuttle gets to the airport in time. Worried because got a request to change to 10:30. Already close at 9:30! How many other horrible things can happen!!! Maybe overbooked?

Oh gosh, I feel so sorry for what you’re going through. It’s miserable when you have to travel and not feeling well. Just get through this day 5 minutes at a time. You don’t know how strong you can be until strong is the only option. I know you’ll get through this!

I also know that you don’t trust your doctors back home. But didn’t you say that new meds are being sent to your home from a prescription through Mayo, though they’ll be sent from Florida? Meds usually arrive fairly quickly! That is your first step towards remission.

You were given treatment options from the doctor at Mayo, right? What was the outcome of that? Are your doctors back home aware of the 2nd opinion at Mayo?
Mayo Clinic is pretty good about providing detailed information for what the necessary next steps,. Do you have printed orders or information on your patient portal on how to proceed from here as far as appointments or what treatments to get when you return home?
I think you should call for an appointment with your current team and discuss your findings with them. My oncology team back home worked closely with Mayo Clinic to get me in remission. There was no chest thumping or second guessing. They all worked together for the goal of getting me to remission so I could get the stem cell transplant. Will you be returning to Mayo for the stem cell transplant?

Can you stay and be treated in Rochester? Did you discuss that possibility with your doctor yesterday?

I want to provide you with a calming exercise to use when you’re on the plane today. Before starting this exercise, pay attention to your breathing. Slow, deep, long breaths can help you maintain a sense of calm or help you return to a calmer state. Once you find your breath, go through the following steps to help ground yourself:

5: Acknowledge FIVE things you see around you.
4: Acknowledge FOUR things you can touch around you.
3: Acknowledge THREE things you hear.
2: Acknowledge TWO things you can smell.
1: Acknowledge ONE thing you can taste.

Wishing you a safe and quiet journey home. Will you let me know how you did on the flight?

I do not want to go home. I need medications now. I do not trust them and have so much damage that should not have happened. I am to fly home today but wish I were staying here. I cannot sleep or cope. Always doing the wrong thing. I wish someone would help me since I always do the wrong thing.