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Blood disorders, Bone, joint, and muscle disorders, Cancer, Chronic pain, Digestive disorders, Eye disorders, Healthy Living, Hormonal and metabolic disorders, Lung and airway disorders, Women's health issues

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Fri, Apr 10 6:01am · Humor and fun chat diversions during the Coronavirus crisis: Join us in COVID-19

I have just found these posts. Thank you for doing this, as we all need a little laughter to lighten our spirits right now. I have enjoyed reading through the posts!

Tue, Apr 7 4:26am · Are you getting cancer treatments during COVID-19? in COVID-19

Thank you so much for these videos!! I am a nurse, but the general public may not know the general rules/train of thought, about clean v. not clean!

Thu, Apr 2 7:28am · Are you getting cancer treatments during COVID-19? in COVID-19

Hi, Dave Foster. The Mangurian building is the cancer building at Mayo, Jacksonville, and is separate from the hospital. They have a check point table at the entrance, but I did not see masks available. But you could ask for one there, if you don't have your own. Is your Dad getting IgG infusions? Welcome! I hope everything goes well you him!

Sun, Mar 29 5:51am · Mobility during multiple myeloma treatment in Blood Cancers & Disorders

Hello kandc317! Thank you, Justin McClanahan, for the invite. Sorry for the delay. And I am so sorry you and your wife are having such a difficult time! Did they do any repeat x-rays/ct's on your wife's spine? And how are her MM lab numbers, such as M-Spike, Kappa/Lambda light chains/ratio, Immunofixation, and immunoglobulins? This would a factor in her treatment plan. I would talk to her oncologist. Does she have a MM specialist? This is a hematologist/oncologist, that specializes in MM, which is a fairly rare blood cancer. They usually work with a local oncologist, and help direct the plan of treatment. Also, is she on an anti viral med like Valtrex or Aclovier? If not, I would ask her Hematologist about it. I have been on this since my 1st chemo. treatment. It is to prevent Shingles. Is she on any treatment for shingles? Learn all you can about MM. It is a complicated cancer, and it appears that every patient with MM is different, to some degree. I have learned to be my own advocate with my disease. Good communication with her doctor is important, as well, so don't be afraid to ask him questions. I write my questions down before my appointment, and go over them with my doctor. I hope her skin issues improve, and that Physical Therapy continues to assist her to regain her strength! It is good that her appetite is improving, which may help her skin issues and her strength, so encourage her to eat! I hope this helps! Best wishes to you both!

Sun, Mar 29 5:10am · Mobility during multiple myeloma treatment in Blood Cancers & Disorders

Sorry for the delay in responding! My MM specialist is continuing my high dose of Kyprolis IV, Pomalyst by mouth, and Dexamethasone (IV x3 weeks, by mouth 1 week). I believe this is because of my Bone lesion progression in October, 2019, after 4 rounds of RVD. My MM Specialist told me that the Dexamethasone will cause muscle weakness and muscle wasting.
I have gained weight, also due to Dexamethasone, which has not helped.
I tire very easily. I have gotten progressively weaker since starting treatment last summer. I do small tasks and rest in between. I nap nearly every day. I feel that stopping my bone damage from MM is more important right now than running a marathon. I do leg exercises, and have started beginner tai chi on You Tube. I am afraid of falling/fractures, so this exercise seems safer and gets me moving. I hope this helps.

Sun, Mar 29 4:21am · Are you getting cancer treatments during COVID-19? in COVID-19

I have stage IIIA Multiple Myeloma. I was diagnosed in June, 2019. I am continuing my treatments with KPD, cycle #4. My restaging PET scan and BMB were cancelled at the last minute, on 3/24/20. They were scheduled for 3/24 and 3/25 at Mayo-Jacksonville, FL. I am an R.N., so I understand the rationale of cancelling non-essential tests and procedures, during this critical time, and the unpredictability that COVID-19 has brought to our world. Right now, the tentative plan for me, is to restage after this 4th cycle, and if bone lesions are under control, we may harvest and freeze stem cells, for future ASCT. I am getting progressively weaker with treatment, although my back, neck, and hip pain has improved, overall. I am very thankful for the decreased bone pain, and pray it is a good sign! I am self isolating as much as possible, because my IgG and IgM are below normal. However, my husband is still working, with the public in retail. So it is still scary. He is being careful at work. We picked up a grocery order at Walmart yesterday, and had to wait a while in the car. Walmart was as busy as ever, and people were coming and going as if nothing is going on. Families with children, and groups of 4, 5, and 6 people with only small purchases, going in and out of the store! The parking lot was full! I wanted to get out of the car and scream at people to go home (but I didn't)! I couldn't believe it! So, I am afraid this COVID-19 pandemic will continue for much longer than anticipated! And my treatment plan will change accordingly. Sorry for the long post!

Sun, Feb 16 6:16am · Exercise during chemo in Cancer: Managing Symptoms

Hi genpene, thank you for your reply. I have stage IIIa Multiple Myeloma. I too, have depression, and anxiety. I also have bone lesions throughout my skeleton, and am also taking steroids as part of my treatment regime. Dexamethasone also weakens bones. I have been stubborn about walking, and also afraid of compression fractures, and pathalogical fractures. Walking is the only safe exercise for me, at this point. Fear of falling is preventing me from being consistent. Any advice on boosting
my motivation would be appreciated!

Fri, Jan 24 8:55pm · Multiple Myeloma in Blood Cancers & Disorders

I would like to add that I have had bone lesion progression, after 4 rounds RVD. and am being treated at Mayo Clinic, Jacksonville, now. I am on 2nd 28 day cycle with KPD. I am seeing a MM Specialist at Mayo. Plan is for ASCT, if and when MM is down., and I qualify. We have several similar side effects, it seems. I have Kappa light chain myeloma, have had very little M spike, KLC/Kappa-Lamda ratios. BMB was 40% plasma in June, 2019 and 10% in October, 2019. I worry that my bone lesions are from something else, but have been assured that I have MM. I just realized your post was from 2016. I hope all is well with you!