Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

callalloo | @callalloo | Apr 20, 2022

In reply to @tml "No and even though read myeloma crowd and said get a specialist I was referred to..." + (show)

@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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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.

callalloo | @callalloo | Apr 20, 2022

In reply to @carolee888 "I am now in smoldering catergory. We are wanting to move to Las Vegas, NV but..." + (show)

In my experience, doctors who treat conditions that are a tad uncommon tend to know others throughout the country also treating it. (One good argument for those conferences and continuing education programs they attended is keeping up to date with other specialists.) So get referrals locally if you can. If someone sounds good, your doctor can help ease you into that doctor's practice by sharing your med records before you make the move. You can always change doctors later but it's reassuring to have doctor's already familiar with any special needs before arrival. And makes moving a lot less stressful.

tml | @tml | Apr 20, 2022

Get a second opinion. I waited too long and regret that. They said not a candidate for transplant and I accepted that. The cancer returned quickly with damage. Just heard someone else was able to get it after first remission so doubly upset.

Ginger, Volunteer Mentor | @gingerw | Apr 20, 2022

In reply to @carolee888 "I am now in smoldering catergory. We are wanting to move to Las Vegas, NV but..." + (show)

@carolee888 Perhaps you can ask your current doctor if he/she has any input. Hematologist oncologists seem to inhabit a small corner in the cancer world, and your team may have some suggestions.

I looked up Healthgrades, putting in Las Vegas, and here are the results: https://www.healthgrades.com/find-a-doctor/nevada/best-doctors-for-myeloma-in-las-vegas
Also, there is a school of medicine associated with University of Nevada Las Vegas. Good for you for thinking ahead!
Ginger

carolee888 | @carolee888 | Apr 20, 2022

In reply to @colleenyoung "I agree that you should find out as much as you can about MGUS. This will..." + (show)

I am now in smoldering catergory. We are wanting to move to Las Vegas, NV but I want to have a really good specialist. I am concerned that the ones in Las Vegas might not be up to speed as much as in LA. Could you advise?

Colleen Young, Connect Director | @colleenyoung | Apr 19, 2022

In reply to @allu "I'm not sure where or when should I get a second opinion I'm still trying to..." + (show)

I agree that you should find out as much as you can about MGUS. This will help you prepare questions for doctors when you seek a second opinion. Here are 3 websites that talk about MGUS in plain language:
- MGUS Mayo Clinic https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
- MGUS to Myeloma: Study Suggests Risk of Progression Can Change (NCI) https://www.cancer.gov/news-events/cancer-currents-blog/2019/mgus-multiple-myeloma-progression-risk
- How Serious Is Monoclonal Gammopathy of Undetermined Significance (MGUS)? (healthline) https://www.healthline.com/health/how-serious-is-mgus

I might suggest reading them and returning here if you have questions. Fellow patients will be happy to share their experiences. And share with you questions you can ask the doctors.

Where to get a second opinion depends on a number of factors. Choose a large cancer center with expertise in hematological cancers, like Mayo Clinic. The other factors are personal. You may need to consider your insurance coverage, your financial and mobility ability to travel, or a preference to stay close to home.

ally | @allu | Apr 19, 2022

In reply to @colleenyoung "@allu, you can get a second opinion at any point during diagnosis and/or treatment. Here is..." + (show)

I'm not sure where or when should I get a second opinion
I'm still trying to find out about this illness

Colleen Young, Connect Director | @colleenyoung | Apr 18, 2022

In reply to @allu "When should I get a second opinion and is that all there is too do wait..." + (show)

@allu, you can get a second opinion at any point during diagnosis and/or treatment. Here is an blog post about the benefits of a second opinion:
- Generally Speaking: Seeking Second Opinions https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/seeking-second-opinions/

Also see this discussion and tips from fellow members:
- How do I get a Second Opinion (cancer)? https://connect.mayoclinic.org/discussion/second-opinion-8/

Are you considering a second opinion at Mayo Clinic?

Ginger, Volunteer Mentor | @gingerw | Apr 14, 2022

In reply to @allu "When should I get a second opinion and is that all there is too do wait..." + (show)

@allu MGUS is not that uncommon. It is a "precancer" if you want to look at it that way. The standard protocol is to watch and wait, that is, monitor with blood tests every 3 or 6 months as the doctor may advise. There are specific values your doctor will be watching for. Most people go for many years with no further complications.

Following a good healthy diet, get exercise, minimize your stress, all work together to help you feel your best, no matter your health situation. And it works like this for MGUS, also! At the end of this post is the link the Mayo Clinic has for information about MGUS. I hope this answers your concerns, but again, I will help you as much as possible.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Ginger

tml | @tml | Apr 14, 2022

In reply to @tml "Yes I did. All going well so far on second round so far. Guess all depends..." + (show)

No, not really. You are keeping me sane!!! I am so thrilled to be on Revlimid and it does seem to be working well. I need to ask my doctor just what numbers say remission. Not sure from the last time as not what I would have thought but guess it was based more on the bone marrow biopsy. the sun is shining and Easter almost here so all is good!!!

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