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@tml

No and even though read myeloma crowd and said get a specialist I was referred to our local provider who is regional and hospital claims affiliation with Mayo. Actually only uses some of their tests I found out. Should have gone last May but wanted treatment quickly and was given Darzalex and Velcade. Worked well with a negative MRD in September but in a few weeks began having what I thought were lung problems. They kept doing tests from end of October until mid-December, 12/17. The doctor (who was assigned after my doctor left on maternity leave) told me on 12/27 that the cancer was back and to come in on next treatment date for Velcade but still monthly maintenance on Darzalex. On 11/30 had a scheduled appointment with my doctor. I had planned a trip back in January thinking vaccines would make a difference by December. I had wanted to ask the doctor if I should go and what was the status of my lung issues but she left early and went on maternity leave the day of my appointment. I had no idea she was pregnant. No one shared or referred me to another doctor. I asked the PA who said have a nice time and was only scheduling tests not able to share any information. When I came back a lot of damage to ribs and spine by next treatment date and I totally freaked. I finally had a great deal of pain a few days after my resumed velcade as the rib broke. The weird thing is I had no pain the whole time I was gone just a tingling sometimes. Made Mayo appointment but seemed to have an awful time getting the pathology slides sent. Both the hospital and the cancer center did not get my waivers and I had to hand carry them to the hospital lab and finally get the MRD doctor’s nurse to use my waiver and get that sent. It was on a Monday but she had Tuesday off so said would do the paperwork on Wednesday. It appears to have arrived only yesterday. My appointment is Monday. I began all this on 2/3! How can both have gone astray? I hope I make it there as leaving here at 4 for a 6:45 flight. Am exhausted already from the last two months. I know there are other options but do not live close to Mayo. I do not want to go back to these doctors. I am hoping someone at Mayo will help me find someone but worry. After being told in remission and really having none, I am not hopeful. I have meds but as an obsessive person, they really do not do much. Very tired and sad and unhappy that I waited so long and now have damage when had none just a clavicle issue that shrunk back by 9/27. Now I worry cannot repair. Asked if something would help and told zometa which I did get but not sure if helping as only had twice. I know there are drugs that can be used but I am not sure I have the fortitude to go through this again.

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Replies to "No and even though read myeloma crowd and said get a specialist I was referred to..."

Rochester

Whenever possible, I get hard copies of my any tests that any doctor does for anyone in the family including pets. After lockdown eased, I changed PCPs to one affiliated with a top medical facility. I took a CD of three previous mammograms to a mammography session. The radiologist spotted a suspicious area and, because I had the CD of previous ones could see that it was a new development. Had ultrasound, biopsy, lumpectomy and post-surgery meeting with oncologist with 4 weeks because we didn't need to first get med records from 3 former doctors.

I started this practice after twice being in a doctor's waiting room when the computer system 'went down' and decided to never have to trust one again just in case. A loose-leaf binder holds the important med stuff, including prescriptions, and travels everywhere we do. It once saved a pet's life at an emergency vet hospital. I have digital backup of this stuff but paper copies don't get accidentally deleted in a software update or hiccup so are my preferencf.