One Simple Improvement
 

I cough a lot. For years, most of the coughing seemed to be caused by GERD--gastroesophogeal reflux disease. In fact I don't have the heartburn and noticeable indigestion of "typical" GERD. Just a dry cough and sometimes problems with talking or singing.

Lately it appears the cancer in my lungs might be contributing a "semi-productive" cough at times. In the brief hiatus between finishing radiation therapy on my right lung and the onset of radiation-induced pneumonitis, I noticed I was coughing a whole lot less.

Then came the pneumonitis. That brought a new, deep, hard, wracking cough. I coughed so hard I gagged. I was having trouble swallowing sometimes. Sometimes I'd cough up some foamy white sputum. The worst thing about the pneumonitis is it causes low oxygen and high heart rate, especially when I get up and move.

Then I decided it might be easier to breathe if I got a humidifier. It arrived last night and I set it up in my bedroom. It's a "no germ" cool mist machine, with a filter and a UV bulb for killing germs.

I am already coughing a whole lot less and breathing a whole lot easier. Let's hear it for DIY palliative care! How about you? Did you figure out things to improve your own health and well being? Tell us about it!

Re: One Simple Improvement
 

I’ve been using a humidifier for my rhinitis for a couple of years now. I only use it in the winter, as my place is very humid in the summer. I have noticed that the cough I’ve had for the last few weeks is getting better, but I don’t know if it’s because of the humidifier. Personally, I think it’s because the medication is working! I’m glad it’s working for you though! Keep us posted regarding how your new treatment plan is working.

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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 normal. 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, 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 one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
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 scar.
08/16 – 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.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
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 TDM1 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.
10/16 – 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
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop L lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!

Re: One Simple Improvement
 

Amy, glad to hear that one simple thing as improved your symptom to a degree. Hey, a clean humidifier, that's novel and time saving.

Palliative care tips? I don't really have any. Well, back pain and lack of flexibility is my primary complaint other than fatigue and altered cognition. I find that standing at the sink doing dishes really pains me, my solution: don't do dishes. ;) It's the best I could come up with.

Re: One Simple Improvement
 

Tracy,

I think not doing dishes would be palliative for lots of conditions!

Actually I'm kidding about that. I kind of like doing dishes. But my back does get tired if I stand in the kitchen (at sink or counter) for too long. Putting one foot up on a low stool helps. So does doing a few "cat/cow" yoga poses while leaning against the counter. So does asking someone to help with the chopping or washing!

Amy

Re: One Simple Improvement
 

Ha! Yeah, dish washing time can be cathartic in spite of this discomfort. Laundry however is my nemesis and must be eliminated for my comfort. Tell me about cat/cow.

Re: One Simple Improvement
 

Cat/cow is a yoga move that unkinks and relaxes the lower back if done gently. It's usually done in "tabletop" (hands and knees), but you can also stand a couple feet from a wall or countertop. It can even be done in a chair. If leaning, make your back nice and flat like a table top and start with your head and neck in line with your spine, in a neutral position. If sitting, sit up nice and straight. It actually starts with cow. Breathe in as you look up and tilt your pelvis back, pushing your belly forward and rolling your shoulders back at the same time. Then as you exhale, look down and round your back like a cat. Repeat. Move slowly and don't force anything.

Here's a video. The poses can be much less exaggerated/athletic than shown here. The breathing is at least as important as the movement. https://www.youtube.com/watch?v=kqnua4rHVVA

Re: One Simple Improvement
 

Thanks for the link, Amy. My low back is my nemesis.

Re: One Simple Improvement
 

A gel filled ergo mat helped me with doing dishes and cooking. But I feel it's better yet to eradicate dish washing :)

Re: One Simple Improvement
 

Hi Traci
I have been going to osteopath for manipulation for lower back (L3,4 & 5). I have displaced them slightly and it is on same side as bone met in femur. Leg gets a bit stiff. Really helps.
Re the dishes - after Xmas & New Year meals my husband is suggesting we use paper plates!!
Julie

Re: One Simple Improvement
 

My improvement started in Feb 2014 and lasts until now. I switched to a plant based diet and eat fish once a week and very low amounts of cheese. I am Armenian and LOVE cheese! I lost 36 pounds, very slowly, and have kept it off! I saw a gal at my daughters house over Christmas who I last saw the summer of 2014...she looked at me and said, you look younger! Made me smile because I have had so much chemo. Hope to continue this into 2017. Happy New Year Everyone!!! Cathy

Re: One Simple Improvement
 

Cathy--

Thank you for sharing that! And it's always great to hear we look good, or look younger.

I think there are a lot of things we can do to give ourselves less pain, better quality of life, and better symptom management.

I still swear by my humidifier. But I've also started quitting any activity or relationship that I do not find life-giving. For example, I heard about a choir that sings at the bedside of people in hospice. I sang for my sister last spring when she was dying, and it was really meaningful and good for me. So, paradoxically, I found that "life-giving." Well, I got in touch with the choir and went to one rehearsal and decided not to pursue it. I didn't tell them why, but the reason is they aren't very good singers or musicians, and don't seem to be trying to get better. They sing a capella and don't even use a pitch pipe. As much as I love to sing, and love to give people the gift of music, I knew I'd be frustrated and annoyed about being a part of a group that sings poorly.

Amy

Re: One Simple Improvement
 

Amy, you are such a lovely and giving person! Cathy

Re: One Simple Improvement
 

Good thing I'm not in the choir. Lousy voice. And come to think of it, my bedside manners not that great either. LOL. YES on the humidifier. I use mine every night, with distilled water. Helps so much with the nose bleeds. Thanks for the share!!