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Topic: Afinitor/Aromasin 2013

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Feb 8, 2013 12:28PM

sueco wrote:

I am waiting for my pills to arrive and fearful of starting a chemo after almost seven years of anti-hormones.  I immediately started looking for info on this site, and the Afinitor topic was started in Jan. 8, 2012 with 35 pages of comments to go through.  Do you think it is possible to start a new topic now that this med combination has been just recently been approved by the FDA? 

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Jan 13, 2019 09:57PM SandiBeach57 wrote:

Grannax2, I hope today was a better day for you. Since I am not familiar with Afinitor, maybe a call to your MO to ask if you should expect these SE's?

Hopefully, someone with experience with this drug can provide you with their personal experience regarding fatigue and if it gets better.

My heart is with you. Just wanted you to know that.

Wear your jewelry! See my biography section for diagnosis and treatments.
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Jan 14, 2019 11:49AM Grannax2 wrote:

Thanks Sandi beach. I go to see my MO today so I'll let her know. Thank for thinking of me.💞

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Jan 14, 2019 04:11PM Nancylm wrote:

Dear Friends, I have been taken off Afinitor, but remain on Aromasin. I was so sick and could barely drag myself to Clinic. I couldn't eat with no taste and no appetite. I had nausea for days. One look at me and I was taken off afinitor and had a nausea pill right on the spot. The doctor said they recently had a patient with a stomach bleed. I also decided to switch to a cancer clinic in my town. So tired of the drive to the city for the past 10 years. The new doctor is young and I'm looking forward to a fresh approach. I have been off afinitor for 2 weeks and I feel great again. I don't know what is ahead, but will stay on this thread for now. Good luck to all of you, and please watch the side effects. Some of them can be serious.


Dx 2/11/2011, Left, <1cm, Stage IV, metastasized to lungs, Grade 1, 0/16 nodes, mets, ER+, HER2-
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Jan 14, 2019 07:43PM Grannax2 wrote:

nanclym. You've had a really rough time on AA. Did you get the blisters too? The nausea was that vomiting with or without diarrhea? And you said one time your face got red? I've already lost five pounds. 💞

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Jan 14, 2019 07:59PM Donnabelle wrote:

Hi ladies -

I am wondering if the AA combo, the two drugs together react to make SEs worse. I am on Afinitor but not Aromasin. Instead I am on Carboplatin every three weeks. I have had very little problem with Afinitor, apart from fatigue. I lost a bunch of weight when I was on Xeloda. I haven't gained it back, but I haven't lost any more weight. I started Afinitor/Carbo on Nov. 9. I have been swishing the dexamethasone twice a day, but some days I forget in the morning. No mouth sores so far. I did have a little rash on my face, but it might have been from some new make-up remover. I used some cortisone gel and it cleared up in a day. I’m so sorry for all who have had a hard time and I hope it improves. Especially those nasty mouth sores.

Donna

Dx 3/13/2013, IDC, Grade 3, ER+/PR+, HER2- Surgery 4/9/2013 Mastectomy: Right Chemotherapy 5/5/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/14/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/13/2017, Stage IV, metastasized to bone/liver/lungs, Grade 3, ER+/PR+, HER2- Chemotherapy 10/27/2017 Taxol (paclitaxel) Hormonal Therapy 1/5/2018 Faslodex (fulvestrant) Targeted Therapy 1/8/2018 Verzenio Chemotherapy 6/2/2018 Xeloda (capecitabine) Targeted Therapy 11/7/2018 Afinitor (everolimus) Chemotherapy 11/9/2018 Carboplatin (Paraplatin) Chemotherapy 3/29/2019 AC Chemotherapy 8/20/2019 Halaven (eribulin)
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Jan 15, 2019 10:01AM masonsmawmaw wrote:

So I am now into my 3rd day off Affinitor and my mouth sores are clearing up. This is definitely the culprit for me since I am still on the Aromasin. I am still fighting fatigue....I go to bed between 6:00 and 7:00 each night. Got me some boost protein drinks for nutrition since appetite is still not good, but I will start the Marinol today which should help increase my appetite. Will also start the magic mouthwash today and will restart Affinitor on Friday night. If those mouth sores come back, I will be calling it quits on Affinitor. Just can't deal with not being able to eat or drink anything. I'm really worried about back pain; I haven't had pain like this since I finished the I/F combo. Praying that it's not progression. Just feels like my ribs are in bad shape. Scans on the 29th will tell the story...

Grannax-watch that weight loss. As you can see from my story, it didn't take long for lots of pounds to come off. I'm sure that is part of the fatigue problem that I'm having.

Jobur- the Biotene toothpaste did the job! I got the gentle mint, the other was fresh mint. I was able to brush my teeth with really no pain at all!

Best to all of you today and this week for improvement!!

MM

Dx 1/6/2001, DCIS, Right, 1cm, Stage 0, 0/2 nodes, ER+/PR- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Jan 16, 2019 08:38AM Nancylm wrote:

Grannax2, yes I had a red face and later the skin peeled off my face. I looked like a beat up boxer. I had a difficult spell of diarrea. That lasted a couple of days until the afinitor was out of my system. I had hoped for a longer run, but the doctor said I had to stop immediately. I'll be seeing my new MO next Wednesday the 23rd. I'll let you know what kind of treatment he suggest. I've pretty much gone through the hormonal. Hugs, Na







Dx 2/11/2011, Left, <1cm, Stage IV, metastasized to lungs, Grade 1, 0/16 nodes, mets, ER+, HER2-
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Jan 16, 2019 08:53AM Nancylm wrote:

Grannax2, yes I did lose weight. I am down about 25 pounds, and back to my original weight when all this started back in 2011. I’m happy about the loss but think I will stabilize now that afinitor is off my list of meds


Dx 2/11/2011, Left, <1cm, Stage IV, metastasized to lungs, Grade 1, 0/16 nodes, mets, ER+, HER2-
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Jan 16, 2019 09:43AM Grannax2 wrote:

I think AA could be marketed as a weight loss drug!

I didn't get to see my MO on Monday, rescheduled for tomorrow.

Still no mouth sores

.

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Jan 16, 2019 10:55AM jobur wrote:

MM - I am so glad to hear your mouth sores are improving after this break from Afinitor. I hope you will be able to eat now and get some strength back. Thanks for the tip on the Biontene toothpaste. Hope your back pain passes and proves to be healing or nothing.

Hi Donna - Glad you are not having any se's from Afinitor. According to the prescribing info, Afinitor and Aromasin are supposed to have some kind of synergy when taken together, so I wouldn't be surprised if this combo makes for worse se's.  I am surprised to learn some mo's are using Afinitor with other drugs. I am all for whatever works and still lets us have a life! Hope you continue to do well on your combo.

Nancy - Sounds like you have had a miserable experience with this combo. Glad to hear you are feeling good after stopping the Afinitor and hope your new mo has some new ideas for you.

Grannax - How is your fatigue? I was going strong for about 3 days and then turned into a total couch potato! I hate feeling like that, I'm used to being active. Did your mo order labs for you yet? If not, be sure to talk with him/her, there are a bunch of things that should be monitored while on this combo.

As for me I am doing okay after only 2 weeks. No mouth sores, definitely some fatigue and back, muscle aches. Labs show liver enzymes have gone through the roof since starting Afinitor, but were a bit better this week. Eosinophils have also been very high. I will see my mo next week.

Best wishes for healing to all!


"What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 7/1/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/4/2014 Arimidex (anastrozole) Hormonal Therapy 4/30/2015 Faslodex (fulvestrant) Targeted Therapy 8/17/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/16/2019 Faslodex (fulvestrant) Targeted Therapy 7/18/2019
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Jan 16, 2019 12:42PM Grannax2 wrote:

Yes she did take labs on Monday. I was supposed to see her but they said it would be another 20 minutes or I could change to Thursday. So, I'll see her Thursday. So, I don't have any results yet. Meanwhile, I don't have any mouthsores, no appetite and no energy. Today I have a cold or something.

I think this drug could be marketed as a weight loss pill. Lol.

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Jan 17, 2019 03:14PM - edited Jan 17, 2019 03:16PM by Rt_chicago

Grannax2 Thank you so much. God bless you! My oncologist at University of Chicago spoke with the IR doc there and is arranging consultation. 🙏🏼

Michelle Dx 5/2018, Stage IV, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy TAC Surgery Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): Saline implant Chemotherapy Xeloda (capecitabine) Radiation Therapy
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Jan 17, 2019 07:31PM Grannax2 wrote:

ft Chicago. Good for you, self advocate. I will be very interested to see what he says. I think it can be life changing for those of us who need it.💞

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Jan 19, 2019 11:45AM SandiBeach57 wrote:

Grannax2, did your MO figure out why you have extreme fatigue from your recent bloodwork? Just thinking about you.

Wear your jewelry! See my biography section for diagnosis and treatments.
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Jan 19, 2019 09:16PM Grannax2 wrote:

No Sandibeach I go in on Monday. I had to reschedule twice.

I am curious to see what is going on. I know almost nothing about monitoring this TX. My MO office staff leaves much to be desired. I'm going to need some help here to get through this. Thursday and night was worst ever. I was having pain that felt like bone pain. I don't have anything except Tramadol that did not help much. Couldn't eat, couldn't sleep. Misery. I had the in the middle of the night worries thinking I must have decided bone Mets and how am I going to handle this if it's every day.

Thankfully, Friday night the SE were better and I got a good night's sleep and a good day today. So, now im encouraged that this is not a constant thing. But, I will have a lot of questions for MO on Monday.

Does AA drop ANC like ibrance? I have good reserves and mine never dropped enough to get me off schedule. Does the weight loss just keep on happening or does it get better? I don't have mouth sores yet. I don't have a cough or any chest SE yet either. I didn't have any fever. So there was not anything to treat. And I got better without any help. So that's good. How often are labs done? Which values do they get concerned about?

Sorry I have so many questions tonight. Help.


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Jan 20, 2019 09:49AM HLB wrote:

Gran have you tried loratadine (Claritin) for bone pain? people who get pain from neulasta use it. I was just reading last night that people who take it have longer survival. It's in the ReDO project. Sorry you are having trouble. These treatments are shit. Pisses me off.

Dx 10/2004, IDC, 1cm, Stage IIA, Grade 2, 2/11 nodes, ER+/PR+, HER2- Surgery 10/29/2004 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 11/29/2004 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/1/2005 AC + T (Taxol) Surgery 9/14/2005 Reconstruction (left); Reconstruction (right) Dx 7/23/2012, IDC, Stage IV Hormonal Therapy 7/23/2012 Femara (letrozole) Hormonal Therapy 3/31/2015 Aromasin (exemestane)
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Jan 20, 2019 11:42AM Grannax2 wrote:

No I take Zyrtec everyday for allergies. Maybe that was part of the problem that night. I'm pretty sure I forgot to take Zyrtec that day. I hadn't thought of the correlation. I'll keep that in mind. I had a pretty good night, I don't feel like running but I think ill be able to go to the grocery store. Lol

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Jan 24, 2019 07:34AM Nancylm wrote:

Grannax2, Sorry you are having a bad time. I can relate to that. This afinitor is tough. I am now at my new oncologist at University of Rochester. He is very nice and he and I decided to give afinitor another chance, but at the lowest dose. He ordered 2 nausea drugs, 2 mouth washes and a steroid cream in case my face swells up. I going to read previous messages so I can catch up with everybody. Love, Na




Dx 2/11/2011, Left, <1cm, Stage IV, metastasized to lungs, Grade 1, 0/16 nodes, mets, ER+, HER2-
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Jan 24, 2019 10:43AM masonsmawmaw wrote:

Hi All-

I'm back on Affinitor after a 9 day break. All of the mouth sores disappeared and my appetite improved a bit during the break, although I did lose another couple of pounds. Down now a total of about 25 pounds since end of October. Like Grannax, I'm wondering if the weight loss will stabilize, or will we continue to lose weight? Oh I long for the day when I can perhaps go back to Ibrance/Faslodex...Happy

My script for Marinol to increase appetite is way too strong for me. I was literally high as a kite...didn't like that feeling at all! I will ask for a reduced dose at next appt. I have also been experiencing itching with the Affinitor...anyone else? Got a script for that too and it really helps. It also helps me sleep like a baby.

My dental doctor recently told me that the steroidal mouthwash (methadexsone, I think) and the magic mouthwash do nothing to help prevent the mouthsores, he said they only help mask the pain. Does anyone know if this is true? If my mouthsores come back, I'm going to be done with Affinitor as those mouthwashes did not help me at all after I had the sores.

Thinking of you all and praying for improvement and good results from this combo...

MM

Dx 1/6/2001, DCIS, Right, 1cm, Stage 0, 0/2 nodes, ER+/PR- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Jan 25, 2019 01:41PM Nkb wrote:

Nancylm and Masonsmawmaw. still trying to decide on my next treatment- wondered:

I am curious as to what made you decide to return to Affininitor- what did you MOs tell you that made it seem like the best choice.

Did your MOs say anything about the medicine making your cancer estrogen sensitive again and therefore you could possibly return to Faslodex and Ibrance? Is that a goal they have offered?

How about the dosage lowering- how is that going? Has anyone started on a lower dose at the beginning.

Grannax and others- I hope that you are feeling better and able to eat and hold onto the weight again.


Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/20/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Hormonal Therapy 5/31/2017 Faslodex (fulvestrant) Targeted Therapy 5/31/2017 Ibrance (palbociclib) Targeted Therapy 3/12/2019 Afinitor (everolimus) Hormonal Therapy 3/12/2019 Aromasin (exemestane) Chemotherapy 3/9/2020 Xeloda (capecitabine)
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Jan 25, 2019 04:15PM Nancylm wrote:

Nkb, my oncologist said I have used up the hormonal, so it’s either Afinitor or I must move on to chemo (pill form). I will ask if I could return to another hormone, I mentioned tomacafin(sp?). But he also was doubtful that it would work after failing on so many hormonal. I think I better get myself ready for chemo as next treatment. How long a run can we expect on Afinitor. I haven’t heard any comments on that. I really messed up the spelling, but too lazyto look it up. Lol. Hoping for some good answers h ere

Dx 2/11/2011, Left, <1cm, Stage IV, metastasized to lungs, Grade 1, 0/16 nodes, mets, ER+, HER2-
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Jan 25, 2019 04:36PM Daniel86 wrote:

Nancylm, you mean Tamoxifen? If so, there are women here for whom it worked like a charmed even though oncs were weary about trying it after all the other antihormonals. I would give it a try. What about Verzenio? Cant remember what severity your progression has but Afinitor is.not necessarily the only option.

Btw, kudos on being on antihormonals for the past 8 years. Reading similar experiences always gives me hope for my wife's future!

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Jan 30, 2019 12:09PM Grannax2 wrote:

AA gave me a better day yesterday. I had energy, food tasted good therefore I ate. But today it feels like something else is brewing. Coughing some yucky stuff, blowing tons of yucky stuff and feel crappy. Do I need to be worried about the Lung SE with these symptoms? I've been on AA for one month. My weight is stable for a week now. Help

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Jan 30, 2019 05:54PM HLB wrote:

Gran I would keep a close eye on the lungs based on what I've read about it. 

Dx 10/2004, IDC, 1cm, Stage IIA, Grade 2, 2/11 nodes, ER+/PR+, HER2- Surgery 10/29/2004 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 11/29/2004 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/1/2005 AC + T (Taxol) Surgery 9/14/2005 Reconstruction (left); Reconstruction (right) Dx 7/23/2012, IDC, Stage IV Hormonal Therapy 7/23/2012 Femara (letrozole) Hormonal Therapy 3/31/2015 Aromasin (exemestane)
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Jan 31, 2019 09:46AM Grannax2 wrote:

I'm going to my PCP to get her opinion on lungs. Hoping she only hears normal stuff.

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Jan 31, 2019 11:20AM Enerva wrote:

hi all,

I am wanted to thank you all for sharing here regarding your different experiences with Afinitor/Aromasin combo.

After reading the information my pharmacy gave me, and also reading many of your experiences I have decided not to take it.

I called my onco office and I told them I won't go on thos drug. So they dont do the paper work to find a sponsor to pay for it for me.

I have decided to manage my issue with pain killer when needed and also with as much as I can healthy eating.

I wish we could all wake up from this nightmare.

Anyway I send you all hugs and I hope for better days for all of us.


Thanks again.


Surgery 3/24/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/23/2013 Reconstruction (left); Reconstruction (right) Surgery 8/26/2014 Reconstruction (left); Reconstruction (right) Dx 12/13/2017, LCIS, 6cm+, Grade 1, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 12/21/2017 Zoladex (goserelin)
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Feb 4, 2019 12:14AM Grannax2 wrote:

I'm done with AA after slightly over one month. The skyrocket ing blood sugars was the last straw. Combine it with extreme weight loss, fatigue and pain.

Tomorrow I get the results of brain tri. And find out what's next. I'm thinking Xeloda.

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Feb 4, 2019 02:30AM Nkb wrote:

that is scary! I have been watching your story and worried about you. I hope your blood sugars get better quickly while off the drug.

I haven’t decided on next med and am getting a second opinion. I still am perplexed about this medicine being recommended so much. I don’t know any good stories.

Hugs and Speedy recovery to you

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/20/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Hormonal Therapy 5/31/2017 Faslodex (fulvestrant) Targeted Therapy 5/31/2017 Ibrance (palbociclib) Targeted Therapy 3/12/2019 Afinitor (everolimus) Hormonal Therapy 3/12/2019 Aromasin (exemestane) Chemotherapy 3/9/2020 Xeloda (capecitabine)
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Feb 5, 2019 12:07AM Grannax2 wrote:

Well I'm off but not without a fight. Exhausted. I will start Xeloda on MRch 1.

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Feb 5, 2019 07:28AM SandiBeach57 wrote:

Grannax2, did you end up with pneumonitis, too? I am so sad that you suffered for a month and QOL was terrible. Can you still model this month?

Wear your jewelry! See my biography section for diagnosis and treatments.

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