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Old 04-21-2017, 06:34 AM   #61
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 441
Re: Back Pain

Hi Juls, so far, the breathing technique seems to be helping with my cough and chest congestion, but it’s not helping with the pain. I had to take two Percocet when I got home from work last night because I was in so much pain, and the pain was making me feel nauseous. I also had to take two this morning, along with two Robax Platinum, and, even though this has numbed the pain, it hasn’t taken it away completely. The good news is, the Percocet is not making me as drowsy as it did the first two times I took them, which makes working easier. I’m just hoping to get rid of this pain before I go on vacation next Thursday. I really don’t want my trip to be ruined because I’m in pain all of the time.

I emailed my nurse practitioner yesterday asking her if there’s a way to speed up the process of repairing my collapsed lung, by using oxygen or something to drain the fluid, etc, but she hasn’t responded to me yet. I have another physio appointment tonight, and a massage appointment on Monday, but, after that I’m busy, and won’t be able to see either of them again until I get back from vacation in May. I really hope they are able to help me before I leave for vacation, but, if not, I’ll just have to talk my paid meds with me. What else can I do.


12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months). I was unable to get a full dose of Docetaxal after my first treatment due to liver enzymes being high.
04/16 – Have port put in.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 Second CA-15-30 blood test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – results are mixed. The good news is, lymph nodes are stable, there is improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm and new ones have shown up. All of them were less than 1cm.
03/17 – Received my genetic test results from Foundation One. It found 11 genomic alterations, 3 therapies associated with potential clinical benefit, and 13 clinical trials from which I might benefit.
03/17 – Second brain MRI –NED!
03/17 – Ultrasound done to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing.
04/17 – Was told that I have developed atelectasis due to shortness of breath, which is what’s causing my back pain.
05/17 – Full body CT scan scheduled to see if I’m still “stable”.
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Old 04-23-2017, 12:13 PM   #62
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 231
Re: Back Pain

Tiffany

They have external means of dealing with back pain. Isnt there a "gadget" (TEMS?)
that provides external electrical stimulation?

Paul
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Old 04-23-2017, 03:50 PM   #63
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 416
Re: Back Pain

Hi Tiffany
Sounds like you are doing all you can. My little knowledge of a collapsed lung is that it takes time & rest! Sorry - not something you want to hear when you are in pain!
I'm sure your holiday will help - everything feels better in the Sun!

As Paul mentioned - Would a "tens" machine help!
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Old Yesterday, 04:52 AM   #64
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 441
Re: Back Pain

Hi Paul, no one has mentioned a TEMS machine to me, so I’m not sure if it will help. I have a massage appointment tonight, so I can ask about it. I’m not sure if she will have one though. I went to another chest physio session on Friday night, and my physiotherapist told me that he’s never heard of atelectasis causing pain before, and that he thinks my pain is what’s causing the atelectasis. He told me to discuss this with my doctor on Tuesday, and to look into getting an x-ray of the area. I didn’t sleep well on Friday as I was in pain all night, and I was in pain all day Saturday, even after taking the Percocet and Robax Platinum. I was supposed to go to a friend’s birthday party on Saturday night, but, I decided to go to the emergency room instead. I was in so much pain, and I thought they would do more for me than my oncologist has been doing for me, and that we might be able to find out what’s causing this pain. I went to the hospital where I am getting treatment, so they would have access to all of my medical records, and they were very helpful. They hooked me up to an IV and gave me some pain meds along with some anti-nausea medication, and took blood work and a urine sample, did a bladder ultrasound and sent me for a spine/thorax CT scan. The good news is, everything looked good, the bad news is, we still don’t know what’s causing my pain. One ER doctor thought that it could be shingles, even thought I don’t have a rash, and another ER doctor thought it was rib pain, in which case it will just go away on its own. This is not reassuring to me, as I’ve had this pain on and off for three months, and it’s getting worse every day!

The ER doctor sent me home at 3:00 a.m. with instructions to take one Acetaminophen every six hours, one Ibuprofen every eight hours, and Hydromorpone 1MG every four to six hours. She told me that if this didn’t work, and I was still in pain the next day, to go back to the hospital. Well, I was still in pain the next day, so, after a sleepless night, I went back to emergency. One of the nurses from the night before was working that afternoon, so she came to talk to me right away, and brought me to a bed. I then spoke to a doctor, who told me that the dosage of Hydromorpone the ER doctor gave me was low, and that I needed to increase the dosage to help with the pain. They hooked me up to an IV and gave me some Hydromorpone to help me with my pain, and to see how much I would need to help with my pain, and then they let me rest for a few hours. They sent me home with another prescription for Hydromorpone, along with a prescription of Ondansetron to help with the nausea caused by the Hydromorpone. I followed the doctor’s instructions and took my medication, however, even with the Ondansetron, the Hydromorpone made me feel really nauseous, and I was unable to keep down my dinner. So, this morning, I went back to taking two Percocet with Ibuprofen, and I’m hoping my Oncologist can give me something else to help me with the pain, so I can still go on vacation on Thursday. I really don’t want to have to cancel my trip, but, at the same time, I’m not sure how I’m going to be able to enjoy my trip when I’m in pain most of the time. I am feeling very discouraged right now, and I keep wondering why this is happening to me! It’s bad enough that I have to deal with cancer and treatment, but, now I have to deal with this never-ending pain, and no one can figure out what’s causing it or how to treat it. It’s very frustrating!


12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months). I was unable to get a full dose of Docetaxal after my first treatment due to liver enzymes being high.
04/16 – Have port put in.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 Second CA-15-30 blood test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – results are mixed. The good news is, lymph nodes are stable, there is improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm and new ones have shown up. All of them were less than 1cm.
03/17 – Received my genetic test results from Foundation One. It found 11 genomic alterations, 3 therapies associated with potential clinical benefit, and 13 clinical trials from which I might benefit.
03/17 – Second brain MRI –NED!
03/17 – Ultrasound done to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing.
04/17 – Was told that I have developed atelectasis due to shortness of breath, which is what’s causing my back pain.
05/17 – Full body CT scan scheduled to see if I’m still “stable”.
TiffanyS is offline   Reply With Quote
Old Yesterday, 12:17 PM   #65
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 231
Re: Back Pain

Tiffany

With the pain so chronic and not ending I have another suggestion for what it is worth. What if a doctor prescribed MS Contin every 12 hours around the clock. You could take the Hydromorphone or Percocet for breakthrough pain. MS Contin (Im sure you know this) is a slow release morphine formulation. Nausea might be a problem but it is less likely with a slow release form of a drug.

Paul
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Old Yesterday, 12:25 PM   #66
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 441
Re: Back Pain

Thanks Paul. I’ll mention it to my doctor when I see her tomorrow. I’ve been taking Percocet today with Advil, and the Percocet is making me feel a little be nauseous, even thought I took an Ondansetron. It doesn’t make me as nauseous as the Hydromorpone though, so I’d rather stay with the Percocet when it’s working. It doesn’t always work though.


12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months). I was unable to get a full dose of Docetaxal after my first treatment due to liver enzymes being high.
04/16 – Have port put in.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 Second CA-15-30 blood test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – results are mixed. The good news is, lymph nodes are stable, there is improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm and new ones have shown up. All of them were less than 1cm.
03/17 – Received my genetic test results from Foundation One. It found 11 genomic alterations, 3 therapies associated with potential clinical benefit, and 13 clinical trials from which I might benefit.
03/17 – Second brain MRI –NED!
03/17 – Ultrasound done to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing.
04/17 – Was told that I have developed atelectasis due to shortness of breath, which is what’s causing my back pain.
05/17 – Full body CT scan scheduled to see if I’m still “stable”.
TiffanyS is offline   Reply With Quote
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