HER2 Support Group Forums - View Single Post - What now

Chelee · 05-08-2010, 03:39 AM

Hi Vicky,
You sure have had your share lately...my heart goes out to you...I know how stressful it can be. After reading your posts here it sounds like could have "Polymyalgia rheumatica"? I had never heard of it until my MIL told me about her friend that has it. I've heard so much about it this last yr. It sounds just like your symptoms. The way your pain came on in shoulders and hips...there is also inflammation involved which would explain the pain your experiencing. You can also present with high alkaline phosphatase results as you are. I couldn't help but notice you are just recovering from pneumonia too--it seems to be related also. Read paragraph below this;

>>>There may be a link between polymyalgia rheumatica and certain viruses, such as adenovirus, which causes respiratory infections ranging from the common cold to pneumonia; human parvovirus B19, the source of an infection that primarily affects children; and human parainfluenza virus.<<<

This may not have anything to do with what your experiencing but after my MIL's told me so much about this Polymyalgia rheumaticato that her friend has I couldn't help but wonder & thought I've just throw it out there just in case. You never know. (Just call me Dr. Chelee.) lol Here is a link that explains it from the Mayo Clinic.

http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441

I hope they figure this out soon for you and can get you feeling better. Thats just not right that your doctor did not call you. She has to have a good idea of the stress your under...it's not right to leave you sitting there waiting. I know I would say something to her...and I know you will. Talk to the surgeon for ideas...that is a good idea. But something does need to be said so she doesn't do that to you or anyone else again. Let us know what you find out. As far as withdraws from Herceptin...I've never heard of that...but it doesn't mean it can't happen. I'm glad your pneumonia is almost gone...that's great. Now maybe you can relax a bit this weekend. Wishing you a very HAPPY MOTHER'S DAY. Keep us updated, & hang in there.

Chelee

05-08-2010, 03:39 AM	#17
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: What now - lower back, hip & shoulder pain Hi Vicky, You sure have had your share lately...my heart goes out to you...I know how stressful it can be. After reading your posts here it sounds like could have "Polymyalgia rheumatica"? I had never heard of it until my MIL told me about her friend that has it. I've heard so much about it this last yr. It sounds just like your symptoms. The way your pain came on in shoulders and hips...there is also inflammation involved which would explain the pain your experiencing. You can also present with high alkaline phosphatase results as you are. I couldn't help but notice you are just recovering from pneumonia too--it seems to be related also. Read paragraph below this; >>>There may be a link between polymyalgia rheumatica and certain viruses, such as adenovirus, which causes respiratory infections ranging from the common cold to pneumonia; human parvovirus B19, the source of an infection that primarily affects children; and human parainfluenza virus.<<< This may not have anything to do with what your experiencing but after my MIL's told me so much about this Polymyalgia rheumaticato that her friend has I couldn't help but wonder & thought I've just throw it out there just in case. You never know. (Just call me Dr. Chelee.) lol Here is a link that explains it from the Mayo Clinic. http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441 I hope they figure this out soon for you and can get you feeling better. Thats just not right that your doctor did not call you. She has to have a good idea of the stress your under...it's not right to leave you sitting there waiting. I know I would say something to her...and I know you will. Talk to the surgeon for ideas...that is a good idea. But something does need to be said so she doesn't do that to you or anyone else again. Let us know what you find out. As far as withdraws from Herceptin...I've never heard of that...but it doesn't mean it can't happen. I'm glad your pneumonia is almost gone...that's great. Now maybe you can relax a bit this weekend. Wishing you a very HAPPY MOTHER'S DAY. Keep us updated, & hang in there. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.