Want to talk about Multiple Myeloma: Anyone else?

@tml I hope you are home, or close to getting home. It will be a relief to sleep in familiar surroundings, won't it? Deep breath, cup of tea, and start your battle on your battlefield!

Here is what I posted 3 days ago, about Revlimid. I have been on it since last August. It is shipped from Texas, and needs a telephonic conversation to happen between them and me each time, to go through a checklist and schedule the delivery every four weeks. We've gotten to know our Fed Ex guy very well!

"As for Revlimid. I am on that, plus dexamethasone. I applied though my cancer center's pharmacy, to Bristol Meyers Patient Assistance Foundation, for a grant to cover my co-pays. They needed tax return and financial information. but I was able to get that grant! My co-pay is $0 thanks to them. Here are a two links that you can research for co-pay relief:
https://copays.org/ Patient Co-pay relief
https://www.panfoundation.org Patient Access Network"

Co-pays can be quite prohibitive, that is definitely true! There are several paths to go through to find help. If your local cancer center does not have a patient advocate to help you out, you may have to do it yourself. But we will answer whatever questions you have and help you out as we are able, don't forget.
Ginger

Thanks still in Rochester. Do not want to go home but have a flight with two stops. I want meds here as feel terrible. Not ever sure what to do.

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.

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 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?

Hope a transplant is sooner rather than later!

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?

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!

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.

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