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Joined: Jul 2005
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I can't say why her docs did the CXR but they always do them to look and see if there are any infiltrates to look for pneumonia and other things (masses) They start here to rule things out.
Tami, I am red hot about your mom's MD office saying you can't get that?? Not true, I dispute what they are telling you FULLY. Good thing she's in the hospital, now YOU go find a care coordinator there and they will get you what you need honey. Sorry they are misleading you and I'm so glad you will be with her soon. Keep us informed.


Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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Tami,
This is only a guess but I suspect the CXR was ordered to evaluate whether your mother has aspirated (taken into the lungs) anything while she vomited or while she dealt with the thick mucus. Aspiration pneumonia, if diagnosed, needs to be treated. Hope she is improving and she becomes more comfortable.
Janet


Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
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I have never heard that about the suction machine either. There should be no reason at all you cant have access to one. Like the last post said get a coordinator and demand one.

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Tami Offline OP
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Thanks
Where do I find a care coordinator? I am not familiar with that term. My Mom is going to an Oncology Group in South Austin. She has a chemo/oncology dr and a radiation dr. When she gets this sick they put her in the hospital across the street from the dr's office. It is just a general type hospital. I am not really happy with the care she gets at this hospital but I am in NY and she is in TX with her husband. He says the location of this hospital is convenient. My personal opinion is heck with convenience.....get her in a hospital with a cancer center that has nurses who specialize in helping cancer patients-rather than general type nurses.

Pending the storm does not mess up my flight I will be in TX later this week and take care of getting her the home suction machine. Thanks again.
Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
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Tami, your Mom is only 6 hours from arguably the best CCC in the world...MD Anderson, in Houston.

After her IMRT, if she's up for traveling, you might consider a consult with them for a "2nd opinion" on the chemo plan.

From my personal observations their level of care is superior to just about anything you will find for her locally.

It can be the smallest details that make a difference


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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Tami Offline OP
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Thanks Michael-
I called MD Anderson when she got so sick from the first chemo run and they told me that they will not take a patient or see a patient who is in treatment until it is complete. I really wish she went there from the beginning but she was in such a hurry to get cured!

She is still doing horribly still and she is beginning to give up. She has not stopped vomiting since Friday and she is only able to tolerate iv fluids. She is in so much pain she is not taking phone calls from family. They put a hold on her IMRTs for now due to her condition. (she only had 1 more dbl session left and 1 single session). They are having a meeting with the chemo dr. tommorrow to discuss quitting the chemo. Not sure what to think or feel about all of this. It seems that another chemo week could possibly kill her but if she stops then the cancer might still be there. It amazes me that my Mom who was so full of life, healthy and so strong (mentally and physically) in the begining of summer prior to the knowlege of her cancer is now in the condition that she is in so quickly.
Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
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Tami,
I don't know how old your mom is but while I was going through the radiation and Chemo treatments I felt so bad I to wanted to give up. My mother literally had to roll me over to give me meds and nutrients through my tube!!!! I'm glad she did that because I was to weak to even care but she did!!! I know it is hard to see someone suffer.

I also had radiation cancelled more than a couple of times because of how I looked and felt. (After a ride of 65 min to get there to find I had to go back home) I also had chemo cancelled because they felt that I just couldn't handle it.

After treatments were over and I saw the doctors I felt so bad that I felt that they were sending me home to just die!!! It was tough and I prayed to God to help give me the strength to fight for my family's sake.

Because of this site I have hope I WILL get better. It is a terrible disease that not only robs the person affected but those around them.

Be there for your mom and try to be patient. I know my mom and I had some disagreements but I'm glad she was patient with me and kept me going.

My last radiation was in mid may and I still cannot eat even soft food. My throat is still swollen from treatment but the Dr. said that it takes time and she knows that I will be okay because she knows where I am going I just need to be patient.

Take care
Love Terry


Terry | 42 female| base of tongue w/swollen lymph nodes | Dx'd-Feb 05 | Stage IVA T2N2M0 | radiation/chemo 8 weeks finished 3rd week May/05 | bilateral neck dissection 9/2/05 45 nodes all neg.
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When a patient is dangerously sick from the cancer treatment, then the situation may have to be re-evaluated. There is a tendency for some doctors to look upon people as the "cancer" or the "heart" or whatever and not as individuals. About 15 years ago I had 5 years of close experience with NCI/ NIH oncology while my mother was in clinical trials and I saw this a lot. I have known (personally) of 4-5 people who stopped treatment when it got to be too much -- however in each case the chance of cure or remission was slim and the decision was based on this. In all but one case the individual was elderly (the other was a 46-year-old with abdominal mesothelioma, a very nasty cancer).

Your mother is getting a very stiff chemotherapy -- e.g. compared to my husband who is only getting carboplatin (6x) and 33 rad. for a stage IV cancer. I would ask them flat-out what additional percent of benefit is being provided by adding the docetaxel and 5-FU (the latter know to cause bad mucositis). We asked the same question of our medical oncologist when she suggested adding Taxol to Barry's carbo and she said she had no data to show that there would be a significant benefit and it might exacerbate his benign essential tremor of his hands -- but there might be some small benefit. Barry thought about it and decided to forgo the Taxol -- realizing he was increasing his risk somewhat but providing better quality of life and less likelihood of having to interrupt or delay treatment. It was his informed decison.

At Sloan Kettering they would have given him cisplatin alone (with the radiation) OR carbo + 5-FU but not all three. He is 66, but that did not enter into the recommendation per their consultation report.

Anyway, when you get there ask hard questions.

Good luck, Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Tami, Hopefully your Mom will feel better when she can hold your hand and talk to you in person. I believe that your strenght and love will help her get through this. Luck and prayers, Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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