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Old 08-17-2018, 01:17 PM   #1
KatherineM
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Join Date: May 2014
Posts: 94
Oxygen Levels

If it's not one thing, it's another. My oxygen levels were around 88, after I exerted myself by walking down the hall, on Wednesday. They tested me again on Thursday, same thing. So, now I have home oxygen, which it's unclear to me when to use. It certainly helps with the cough. I'm consistently at 95-98 with it on. When I take readings without, I've been getting 83-88. My onc is out of town, but the triage guy wants me to use it when I'm out and about. My pulse is also high, around 110.

What am I risking by letting my oxygen get low? It seems like there is risk of organ damage? Are there risks to getting too much oxygen?

It really depresses me to have to wear the tube and take the canister with me everywhere. I mean, it's not a very fashion forward look. "Here is our model, Katherine, wearing a lovely green dress, to match her tank of oxygen, with a nude cannula creating an illusory mustache effect. Isn't she special?"

Sorry, I must not be getting enough oxygen to my head. I am joking, of course, because what else can I do?
__________________
_______________________
Diagnosed 3/26/14 BC Stage 3a ER neg PR neg HER-2+
5 cm tumor in left breast, needle node biopsy positive
Started TCHP 4/25/14 - 6 rounds
Oncologist can no longer feel tumor, after 4th round
Chemo shrunk tumor to less than a mm
Lumpectomy and axillary node dissection 9/3/14
Radiation for 5 weeks, with boost
Herceptin until 4/3/15
CT Scan on 4/27 shows lung mets (lots of little ones on both sides, largest 1.6 cm) STAGE IV
Lung biopsy shows still HER2+++/ER-/PR-
Taxol with Herceptin and Perjeta May, June, July 2015
Lung mets reduced by 50%
Just H&P through Fall 2015
11/15 Progression
Back on Taxol with H&P January 2016
THP no longer working March 2016
Start Kadcyla 3/16 After first treatment, experienced low platelets, tongue turned black, had to have transfusion. Dry cough and shortness of breath for first week, improves over second and third.
4/16 Platelet transfusion after second treatment, blood blisters in mouth. Allergic reaction to platelets.
6/16 Kadcyla not working. Progression to liver, though lung mets smaller.
7/16 Start Xeloda and Tykerb.
11/16 Port infected. Taken out. Have to go off chemo.
1/17 Back on Xeloda and Tykerb
5/17 Tykerb and Herceptin
11/17 Navelbine and Herceptin
12/17 Progression in lungs, liver reevaluated, no progression
1/18 Haloven and Herceptin
2/18 Sloan Kettering consultation
3/18 Brain mets, 16 lesions, largest 16mm
3/18 Cyberknife to 16mm lesion
3/18 Haloven and Tykerb added
4/18 Scan shows all lesions significantly smaller! Some almost gone. Radiation oncologist says she's never seen anything like it
7/18 Brain scan shows progression, w/ with one new lesion. Don't want to do WBR. Will try for tucatinib.
8.15.18 Start Keytruda
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Old 08-17-2018, 03:14 PM   #2
tricia keegan
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Location: Ireland
Posts: 3,421
Re: Oxygen Levels

Katherine I'm sorry I don't have advice but my heart goes out to you and just wanted to send good wishes and I'm sure someone else will help more.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 08-17-2018, 05:29 PM   #3
Carol Ann
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Join Date: Dec 2013
Posts: 1,044
Re: Oxygen Levels

I am so sorry, like Tricia said I don't have any advice either but wanted to let you know I am here to listen.


This sucks so much.



Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-18-2018, 12:30 AM   #4
Pamelamary
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Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 470
Re: Oxygen Levels

Katherine,
I guess you have to go with what you have been told by the medicos. You can at least check when your oncologist is around. I can really feel for your reluctance to have oxygen as a fashion statement - you made me smile, but it's sometimes the little things which can get us down. Hope the Keytruda works well for you.
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 08-20-2018, 12:54 PM   #5
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 1,967
Re: Oxygen Levels

Katherine,

Apparently Keytruda can cause an allergic lung inflammation and low RBCs, both of which would cause poor blood oxygenation. It appears the above are both relatively rare, but are listed side effects. My suggestion would be to speak with a covering doc asking for blood work to see how your RBCs are holding up. Apparently your body would be attacking those and destroying them if they are found to be dropping. Interesting response. It may be that this is an allergic immuno response in both cases and can be treated with steroids perhaps, or another method to tamp down the immune system's activity. As I said earlier, perhaps this is an initial reaction which will abate with time, but I would certainly press them a bit for an explanation and treatment of the symptoms if warranted beyond the oxygen administration.

Sorry, I do not have more information. I have to run, but urge you to pop onto PubMed and search there. They may have some more info.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 08-20-2018, 05:24 PM   #6
donocco
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Join Date: Oct 2013
Posts: 396
Re: Oxygen Levels

I think I read somwhere that you can use Keytruda with low dose steroids together without
diminishing the effect of Kaytruda. Not sure. Its hard to remember everything. I thought it said if the immune pneumonitis was grade 3-4 the Katruda has to be discontinued but not if it is Grade 1-2. Im printing an article now that might shed some light on the situation.

Paul
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Old 08-20-2018, 11:11 PM   #7
donocco
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Join Date: Oct 2013
Posts: 396
Re: Oxygen Levels

The use of the steroids with PD1 inhibitors is contraversial. No definite answer yer
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Old 08-22-2018, 06:28 PM   #8
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 1,967
Re: Oxygen Levels

Hey there, Katherine! Just checking in to see how you are coping. I am hoping and praying you are feeling better. Please post an update when you are able.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 08-23-2018, 09:24 AM   #9
KatherineM
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Join Date: May 2014
Posts: 94
Re: Oxygen Levels

Hey, there. So, I met with my oncologist today. She wants to put me on Adriamycin, which means Goodbye, Keytruda, I hardly knew ye. Adriamycin is a chemo that the cancer has never seen before, with a good track record of working quickly. Keytruda/immunotherapy is a luxury I can't afford at this point; not enough data on breast cancer, and not fast-working enough for the way the lung mets are progressing. In two weeks, the lesions (about 16-20) have grown bigger. The doctor thinks that, because we ruled out pulmonary embolism and pneumonitis, it's just the progression of the mets that is causing my oxygen levels to fall so low. I am on 24/7 oxygen, about to get an InogenOne G3 oxygen concentrator. The tanks and heavy grey concentrator I have now are like WWII missiles -- so cumbersome and not portable! I haven't gone out since I got them, except to go to the hospital. Drepressing!

Start on Tuesday morning. Cross your fingers for me!
__________________
_______________________
Diagnosed 3/26/14 BC Stage 3a ER neg PR neg HER-2+
5 cm tumor in left breast, needle node biopsy positive
Started TCHP 4/25/14 - 6 rounds
Oncologist can no longer feel tumor, after 4th round
Chemo shrunk tumor to less than a mm
Lumpectomy and axillary node dissection 9/3/14
Radiation for 5 weeks, with boost
Herceptin until 4/3/15
CT Scan on 4/27 shows lung mets (lots of little ones on both sides, largest 1.6 cm) STAGE IV
Lung biopsy shows still HER2+++/ER-/PR-
Taxol with Herceptin and Perjeta May, June, July 2015
Lung mets reduced by 50%
Just H&P through Fall 2015
11/15 Progression
Back on Taxol with H&P January 2016
THP no longer working March 2016
Start Kadcyla 3/16 After first treatment, experienced low platelets, tongue turned black, had to have transfusion. Dry cough and shortness of breath for first week, improves over second and third.
4/16 Platelet transfusion after second treatment, blood blisters in mouth. Allergic reaction to platelets.
6/16 Kadcyla not working. Progression to liver, though lung mets smaller.
7/16 Start Xeloda and Tykerb.
11/16 Port infected. Taken out. Have to go off chemo.
1/17 Back on Xeloda and Tykerb
5/17 Tykerb and Herceptin
11/17 Navelbine and Herceptin
12/17 Progression in lungs, liver reevaluated, no progression
1/18 Haloven and Herceptin
2/18 Sloan Kettering consultation
3/18 Brain mets, 16 lesions, largest 16mm
3/18 Cyberknife to 16mm lesion
3/18 Haloven and Tykerb added
4/18 Scan shows all lesions significantly smaller! Some almost gone. Radiation oncologist says she's never seen anything like it
7/18 Brain scan shows progression, w/ with one new lesion. Don't want to do WBR. Will try for tucatinib.
8.15.18 Start Keytruda
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Old 08-23-2018, 09:43 AM   #10
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,044
Re: Oxygen Levels

Fingers crossed!!


Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-23-2018, 03:34 PM   #11
Laurel
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Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 1,967
Re: Oxygen Levels

Katharine,
I will cross fingers and toes! Good luck with Adriamycin. I found it more tolerable than Taxol! Hope you will, too!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 08-24-2018, 06:56 AM   #12
Lucy
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Join Date: Oct 2014
Posts: 278
Re: Oxygen Levels

Fingers crossed that all goes well. Like Laurel, adriamycin was more tolerable for me than taxol. Good luck and keep us posted.
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Old 08-27-2018, 11:02 AM   #13
Donna H
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Join Date: May 2014
Posts: 243
Re: Oxygen Levels

Fingers crossed for positive results.
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