CAMUL - Carol, Please check in when possible ..

I think of you daily and all you have been going through.  A short note to update us?

Hugs,

Doris

camul said:

I did this last nite, must not havr waited long enuf.
Have seen med onco, pain mgt dr, and rad onco. med onco says tumor markers looked ok nothing to worry about, maybe do acupuncture/and massages 1-2 weekly. Paun doc took blodwork, came back low on vit b12 and hypothyroidissm again, made me appt w/ endo. Rad onco looked at last scan of left leg, says not stable as new metabolic/tumor activity in left leg.
Having bone and ct/scan on Wed. She is concerned w/numbness in hands /feet as weell as whole body crampong. Med onco aagrees w/scans. Med dr. says take ritalin in am and lunchgime for exhaustion and sleeping aid at night. I say no, find out why so exhausted. Rad onco agrees, thinks something is not right as spine is so sore cant stay asleep. Wake up w/cramping and pain in legs aand spine.
All agree, this may be as good as it gets, but checking it out none the less. .
So a week from Monday I will have results of scans, and the following Monday I see my endocrinologist whom I love. All women now! They coordinated it all in about 15 minutes aand they have waited 3 weeks for notes from my med onco. I brought mine with me, but his office has not responded after 2 requests.
I am hoping they can fix whatever, there is not much quality now.

Carol,

I am keeping my fingers crossed that they can find something to help restore some quality for you again.  I wish you weren't going through this.  You are a tough tough lady.

Fingers crossed,

Clementine

Jean 0609 said:

Thinking of you Carol

You are in my thoughts and prayers daily. 

 

xoxo,

Jean

 

Responded last nite apparently didnt send. I am doing ok. Very frustrated. Saw my Med onco, Pain Management, and rad onco in the last week. Pain doc ran adl blood tests, was out of town til Wed. By 830a. she had faxed info to med onc, rad onco, and endo then called me to let me know the results. High sugar, B12 too low, I am hypothyroidism (endo called while I was on with her). She has requested 2x for report from new med oncologist, still no reply. I told her I brought blood copies to rad onc, she was going to go and get . Rad onc has scans for Wed. will have results Fri. will meet with tumor board Monday morning before seeing me. She does not like my lungs, sounds like fluid. Med onc says everything is ok because of tumor markers, yet ct scan in er 2 months ago showed metabolic tumor activity in left leg, calf and femur. When I asked he said tumor marker was ok, not to worry. Rad onco is hesitant on more radiation, thinks at thus point oral radiation may be best option. Asked about chance of paralysis if spinal column at c spine level gets comprimsed.She said if that happens, it would also affect breathing and I wouldnt we alive long enuf to worry as I wouldnt be able to breathe Decided with her, no ritalin /sleeping pills to give me energy. Better to find the cause. This may be as good as it gets! My orig. Onco was aggressive. Chemo, scans, oxygen, etc. Then as soon as I had to go on medicare, he stopped everything but blood thinners and Thyroid meds. His only option was hospice. New med onco is all for t markers, very conservatjive. He comes from NIH andnhas always worked in research and trials, has not spent much time w/patients but they say he is really informed on all new treatments. Rad onco said both are excellent doctors, just at oposite ends of the spectrum No one can give me a prognsois, but she will work with the e do, pain mgtdr and med onc ifi he responds to her requests

camul said:

Jean, Olga,doris, vicki Sam and Clemintine, thank you.

Responded last nite apparently didnt send. I am doing ok. Very frustrated. Saw my Med onco, Pain Management, and rad onco in the last week. Pain doc ran adl blood tests, was out of town til Wed. By 830a. she had faxed info to med onc, rad onco, and endo then called me to let me know the results. High sugar, B12 too low, I am hypothyroidism (endo called while I was on with her). She has requested 2x for report from new med oncologist, still no reply. I told her I brought blood copies to rad onc, she was going to go and get . Rad onc has scans for Wed. will have results Fri. will meet with tumor board Monday morning before seeing me. She does not like my lungs, sounds like fluid. Med onc says everything is ok because of tumor markers, yet ct scan in er 2 months ago showed metabolic tumor activity in left leg, calf and femur. When I asked he said tumor marker was ok, not to worry. Rad onco is hesitant on more radiation, thinks at thus point oral radiation may be best option. Asked about chance of paralysis if spinal column at c spine level gets comprimsed.She said if that happens, it would also affect breathing and I wouldnt we alive long enuf to worry as I wouldnt be able to breathe Decided with her, no ritalin /sleeping pills to give me energy. Better to find the cause. This may be as good as it gets! My orig. Onco was aggressive. Chemo, scans, oxygen, etc. Then as soon as I had to go on medicare, he stopped everything but blood thinners and Thyroid meds. His only option was hospice. New med onco is all for t markers, very conservatjive. He comes from NIH andnhas always worked in research and trials, has not spent much time w/patients but they say he is really informed on all new treatments. Rad onco said both are excellent doctors, just at oposite ends of the spectrum No one can give me a prognsois, but she will work with the e do, pain mgtdr and med onc ifi he responds to her requests

I truly believe that some of the differences also come from the atmosphre. Onco:#1, is one of the owners in a 'For-Profit' offce. I had every test and scan run, every new chemo, etc every new med,
Med onco #2 has been way consevative. Scans every 4-6 months.
Now it is all about quality!.

camul said:

Jean, Olga,doris, vicki Sam and Clemintine, thank you.

Responded last nite apparently didnt send. I am doing ok. Very frustrated. Saw my Med onco, Pain Management, and rad onco in the last week. Pain doc ran adl blood tests, was out of town til Wed. By 830a. she had faxed info to med onc, rad onco, and endo then called me to let me know the results. High sugar, B12 too low, I am hypothyroidism (endo called while I was on with her). She has requested 2x for report from new med oncologist, still no reply. I told her I brought blood copies to rad onc, she was going to go and get . Rad onc has scans for Wed. will have results Fri. will meet with tumor board Monday morning before seeing me. She does not like my lungs, sounds like fluid. Med onc says everything is ok because of tumor markers, yet ct scan in er 2 months ago showed metabolic tumor activity in left leg, calf and femur. When I asked he said tumor marker was ok, not to worry. Rad onco is hesitant on more radiation, thinks at thus point oral radiation may be best option. Asked about chance of paralysis if spinal column at c spine level gets comprimsed.She said if that happens, it would also affect breathing and I wouldnt we alive long enuf to worry as I wouldnt be able to breathe Decided with her, no ritalin /sleeping pills to give me energy. Better to find the cause. This may be as good as it gets! My orig. Onco was aggressive. Chemo, scans, oxygen, etc. Then as soon as I had to go on medicare, he stopped everything but blood thinners and Thyroid meds. His only option was hospice. New med onco is all for t markers, very conservatjive. He comes from NIH andnhas always worked in research and trials, has not spent much time w/patients but they say he is really informed on all new treatments. Rad onco said both are excellent doctors, just at oposite ends of the spectrum No one can give me a prognsois, but she will work with the e do, pain mgtdr and med onc ifi he responds to her requests

My wish that your journey on this miserable road stays stress-free and comfortable. You have been there for so many of us and maybe you will recall your own words at those times for yourself

Sherry

tufi000 said:

Keep your center dear one

My wish that your journey on this miserable road stays stress-free and comfortable. You have been there for so many of us and maybe you will recall your own words at those times for yourself

Sherry

to find the right combination of whatevers to improve your quality of life.  Just wish I could make it all better.  I do continue to keep you in my thoughts and prayers.

Hugs,

Suzanne

VickiSam said:

Carol ...

Sisters in PINK -- have circled around you, sending LOVE, Support, PRAYERS, Positive Thoughts, HOPE, and Magic Sprinkles...  We prayer relief comes to you, and sooner.

You inspire so Many of Us!

 

Vicki Sam