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Old 04-06-2021, 09:00 PM   #21
Catherine
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Re: its back

Hi Donna, just checking in after not being on line for quite a few months. So sorry to hear your news. I concur with the others, treatment has come to be more and more sophisticated and definitive. No fun though to have back pain and not be able to sleep on your back. Sending hugs and support your way. We will be here for you!
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 04-20-2021, 06:35 AM   #22
Donna H
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Re: its back

I had my second chemo last Friday. Yesterday was miserable but I feel human again today so hot damn to that! I get a pet scan on the 28th - trying not to pin too much hope on the results, but hope springs eternal. My husband I are going to take a quick trip to the ocean after the scan - be gone for about a week. I do not want to hear my results until I see my doctor on the 7th of May. Wish me luck not peeking at the patient portal! BTW- I'm bald again. Sure does save time getting ready in the morning.
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Old 04-21-2021, 05:52 PM   #23
Mary Jo
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Re: its back

Donna...thinking of you and praying for you tonight. I hope your trip to the ocean is wonderful and you and your husband are able to enjoy this time away.
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 04-25-2021, 05:22 AM   #24
JessicaV
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Re: its back

Hi Donna, I just dropped in to the page after months away. I am so sorry to hear this is happening to you. I am so glad you are sharing this time and experience with the group, where there are so many good news stories of quality survival in Stage 4, and you can share hope and despair and be here however you are. I send love and hugs and enormous good wishes that the days will each be better and the treatments you go through will bear fruit.
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1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 05-01-2021, 05:47 PM   #25
Melissa
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Re: its back

Donna,
Thinking of you and wishing you and your husband the greatest time at the beach!
-
Melissa
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2022 - 16 year survivor!
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Old 05-06-2021, 08:52 AM   #26
Donna H
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Re: its back

It was great to get away and to put my toes in the sand. Tomorrow is treatment day and I will get the results of my pet scan.
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Old 05-11-2021, 09:26 AM   #27
Donna H
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Re: its back

Hi All
Friday was treatment and pet scan results. Overall, scan results were positive. 2 liver tumors are gone (i do have a tiny new one but that probably popped up while waiting to start chemo after spine surgery). Large liver tumor is stable. Lymph, lung and spine tumors have gotten smaller. The only question areas are bones (femur and pelvis) - those are lighting up like crazy but most likely because of the Zaxio shots that encourage marrow growth. So we wont really know until shots are done.

I will see the radiologist on the 24th. Spine surgeon suggested rads to my spine because entire tumor couldnt be removed. Oncologist also said there are other options for my liver tumor should traditional chemo not do the trick.

I see the throat doctor on the 26th. It would be great to be able to talk more normally! Especially since I am in outside sales and usually talk on the phone a lot.

This chemo cycle seemed a little more tolerable. So maybe I am trending in a positive way!
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Old 05-12-2021, 04:21 AM   #28
Laurel
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Re: its back

Good morning, Donna! I have been gone from the board for a bit. Whirlwind of buying a new home and moving had me snowed under.

Overall, your scans appear promising. I think you are doing Taxol as your chemo? I hated that s*^t to be bluntly candid. It gave me such neuropathy in my feet that I dubbed them my "Herman Munster" feet, a reference to the old comedy The Munsters from the 60s. Remember it?

Anyway, I took L-glutamine which helped greatly and I have no permanent peripheral damage. The other alde to make Taxol more tolerable was to take 2 Aleve about 36 hours post infusion and take them twice daily for a few days. Aleve (and timing of the first dose at 36 hours--very important to "get out in front of the pain") was a Godsend. Oddly, I did not realize the importance of taking it BEFORE the nerve pain began. Then I would try to address the pain with Percocet which literally knocked me out for an hour and a half only to awaken with the pain untouched. It was just prior to my final infusion where my Onc instructed me to take the Aleve early and to continue it for a few days. That was my easiest infusion! Ah well....

https://pubmed.ncbi.nlm.nih.gov/11350883/

Did you discover whether your mets are indeed Her2 positive? Hormone positive? Curious.

Wishing you Godspeed. Praying for good results from treatment and freedom from pain.
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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

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

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Old 05-12-2021, 01:06 PM   #29
donocco
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Re: its back

The Aleve news is interesting. Try to take it with food if youdecide to use it. It is an NSAID and can upset the stomach. Of course tell the oncologist you are taking it as it can reduce fever and possibly mask any infection that might occur. I do remember something about using Aleve for fevers in oncology that make its action different from some of the other NSAIDS (Motrin etc). To be honest I forgot the details and Ill look it up.

Paul
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Old 05-13-2021, 11:23 AM   #30
Donna H
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Re: its back

I was told to take Aleve and Claritin for the 5 days I am getting Zarxio shots. So I do. The Claritin doesnt work against nasal drip so I always have tissue at the ready. Zarxio doesnt seem to work as well as Nuelasta but my insurance wont cover Nuelasta.
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Old 05-13-2021, 11:28 AM   #31
Donna H
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Re: its back

Also, when I finally read the initial and second pet scan, it turns out the cancer is also in my pelvis and lungs. Seriously, HER2 is fast moving. Crazy.
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Old 05-13-2021, 05:49 PM   #32
Laurel
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Re: its back

Sorry to hear the beast is in your pelvis and lungs as well. So it is Her2 positive mets? Really sorry you are suffering and will pray you get some relief. Chemo is a tough go. No doubt about it. How long until your next scan?
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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

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

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Old 05-14-2021, 02:44 AM   #33
donocco
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Re: its back

Laurel

I noticed on your signature line you switched back to Tamoxifen.
If they are using antidepressants for hot flashes you have to be careful which
one they use. Tamoxifen is an inactive prodrug that is changed to an active form by means of the enzyme Cyp2D6. Antidepressants like Prozac / Paxil Wellbutrin or Celexa inhibit this enzyme and prevent the formation of the active drug. Effexor Celexa and Pristiq are much less inhibitory toward Cyp2D6'. I dont want to alarm you, just a heads up.

Paul
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Old 05-14-2021, 02:46 AM   #34
donocco
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Re: its back

I meant Cymbalta as one you shouldnt use with tamoxifen not celexa
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Old 05-14-2021, 03:42 AM   #35
Laurel
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Re: its back

Paul,

I stopped anti-hormonals after 5 years. The reason I switched back and finished with Tamoxifen was due to joint issues with Femara. I have never used anti-depressants, but it is good information and glad you shared here. Like many cancer patients, I had to weigh QOL with the small fraction of decreased incidence of recurrence provided by an additional 5 years of anti-hormone treatment. I may live to regret that decision, but as with so many decisions in life, one plays the hand dealt and lives with the consequences.
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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

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

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Old 05-14-2021, 06:52 AM   #36
Donna H
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Re: its back

Yes, the cancer is HER2 again, or should I say still HER2? Not sure.
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Old 05-15-2021, 01:44 AM   #37
Catherine
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Posts: 715
Re: its back

Donna, wishing you better days ahead. So sorry that you have to go through chemo again. Iím hoping the soreness is going away in your back. Good thoughts and prayers coming your way!
__________________
Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 05-20-2021, 07:50 AM   #38
Donna H
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Join Date: May 2014
Posts: 296
Re: its back

My treatment day is being moved up from Friday to Thursday to accommodate getting a Nuelasta shot. I had been getting the Zarxio shots (5 shots, starting 5 days after chemo, administered at home). The Zarxio shots havent worked. I ended up with stage 4 neutropenia each cycle. Apparently that isn't good. Of course my cheap insurance won't cover the on-body Nuelasta which is why I will have to go back to the oncology office for the shot. But hopefully this shot will work. It did in 2014 so I anticipate it will again.
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Old 06-17-2021, 06:29 PM   #39
Laurel
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Re: its back

Donna,

Sorry, been a one woman wrecking crew getting the old house primed for sale. Anyway, just popping on the board after a long absence. I was instructed on how to administer my own Neulasta injection post-infusion so I could avoid traveling back for the jab. I really did not suffer from nausea unless I was in a car, so self-administration was a good compromise. The injections were sent to my home and I kept them in my fridge.
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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

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

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Old 06-24-2021, 08:24 AM   #40
Donna H
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Posts: 296
Re: its back

I had my fifth chemo on the 18th. My red blook count was low but not too bad. Everything else looked good enough on the 18th. This cycle has been the worst by far. I fainted on Tuesday. Food runs right through me so I am popping amodium like candy. So far, today has been a better food day. I dont know if it was the 10 radiations in between cycle 4 and 5 or just luck of the draw but yikes. Fatigue is off the charts. I see my oncologist tomorrow. It will be interesting to see how my bloodwork looks. My treatments are just taxotere, herceptin and perjeta. I really thought having only one chemo would be easier.
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