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Old 03-11-2018, 10:36 PM   #1
JessicaV
Senior Member
 
Join Date: Apr 2014
Posts: 185
Chemo-Induced Osteoporosis:beating it naturally?

In about May of last year, I fractured 3 ribs by levering the hedge clippers hard against my chest to cut through an inch-thick rose branch. I had a bone scan then that showed up the 3 fractures, two where I levered against my chest under my arm, and one on 6th rib closer to the sternum. Plus severe osteoarthritis in an right elbow I broke during chemo in 2014 and in my spine and in my left shoulder. I would have liked a full report but the GP only asked about my ribs.

Now I just had a BMD DEXA scan and assessment. It shows that I have T-scores of 3.3 for my lumbar spine (osteoarthritis) 1.5 for my femur and total hip, and 1.1 for my forearm(all in the mild osteopenia level).

I have been daily taking two or three of my 1000 VitD3 tabs plus 1500 glucosamine (to protect against/treat the osteoarthritis) plus 1000 vit E plus a general vitamin supplement, swimming and walking once or twice a week, etc for the osteoarthritis which I am sure was miminal before treatment but hit hard during/after chemo of docetaxol, carboplatin and herceptin. Trying to eat healthy, v little alcohol, one coffee a day, no carbonated drinks, minimal starch and sugar, eating cheese eggs' fish and chicken plus lots of vegs and fruit much of it from my own garden. Ongoing heartburn an hour or two after eating which is reduced when i go without wheat products or sugary things, and with smaller meals etc.

My cancer diagnosis was non-hormonal tumor, only HER2+ so I am not on Aromase Inhibitors or tamaxofen or similar.

Reading further now, I discover that my own chemo regime significantly affects bone density in many women. Esp the Lumbar spine. So what I have is drug-induced osteoporosis/osteopenia, which I believe must be different to the normal osteoporosis of aging. I am looking for ways to reverse it and strengthen my bones naturally through diet and exercise because I am not impressed by what I have read about the medical treatments for osteoporosis i.e. that they make heartburn and reflux worse, and add to bone density by reducing breakdown of bones, not by increasing new bone growth, and may in fact not make any difference to bone strength even if BMD is improved. Like using strontium compounds which are denser than calcium so increase BMD without really helping at all.
I have a rebounder (this exercise is meant to really help) and plan to use that for 10min blocks several times a day. And to do more walking. I am trying to find out about forms of calcium that can be absorbed well, and how exactly to balance calcium, magnesium, VitD3 and all the other nutrients needed to rebuild healthy bones.
I would love to know other people's experience of things that help, and thoughts and ideas and research.
best wishes
Jessica Vivien
__________________
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.

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Old 03-12-2018, 01:01 PM   #2
Donna H
Senior Member
 
Join Date: May 2014
Posts: 216
Re: Chemo-Induced Osteoporosis:beating it naturally?

Hi Jessica-
I had my first bone density test after chemo and Herceptin was finished. I was DX with osteoporosis in my hips and spine and osteopenia in my wrists. I was 51 at the time. I tried increasing exercise and calcium intake thru foods. A year later my numbers were worse. I have started getting Prolia shots every six months - just had my 4th last week. I will get another bone d test this summer to see if anything has changed. I haven't had any side effects from the shots but I am not a big fan of needing to get them (or taking any drugs for anything). I was thinking of seeing a nutritionist to get a better handle on how to treat this by eating a better balanced diet if possible. I had one doctor tell me to stop doing any "risky" activity. I stopped seeing him! I look forward to hearing what you come up with to treat osteo and anything the panel might have to offer as well.
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Old 03-12-2018, 06:13 PM   #3
Kim in CA
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Join Date: Sep 2001
Location: California's Gold Country
Posts: 401
Re: Chemo-Induced Osteoporosis:beating it naturally?

Hi Jessica,

I too will be following this thread for ideas. I broke my leg last April when my horse spooked and ran me into a tree, twisting my leg until my tibia and fibula snapped.

I had a bone density test in 2013 showing osteopenia, not surprising given that I went into chemopause at 42, and also having taken aromatase inhibitors for 14 years. My oncologist prescribed Zometa for me to be given twice a year for 3 years, but I stopped after the second infusion because I had an extraction with implant planned and was very afraid of getting osteonecrosis of the jaw.

Just had another bone density last week, and my osteopenia is worse, but still not yet osteoporosis. I'll be 63 next month, and I'm not willing to give up my horseback riding, as it is truly my therapy, so I'm always looking for ways to help my bones! I do take my calcium and vit D supplements, but doctor warned they are not as ideal as dietary sources. There is some concern that excessive use of calcium supplements may be harmful and a risk for coronary artery disease. Sheesh!
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 03-13-2018, 04:56 AM   #4
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 541
Re: Chemo-Induced Osteoporosis:beating it naturally?

Hi

The website - saveourbones.com - might be worth looking at. It has some good info, exercises etc.

Juls
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Old 03-19-2018, 05:37 PM   #5
JessicaV
Senior Member
 
Join Date: Apr 2014
Posts: 185
Re: Chemo-Induced Osteoporosis:beating it naturally?

Hi, thanks so much for your input Donna, Kim and Jules. I realise there must be an enormous number of other people with this problem, maybe enough to interest researches somewhere already working on bone metabolism.
I will let you know when I have more info to share
Jessica
__________________
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.

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Old 03-21-2018, 09:35 AM   #6
kk1
Senior Member
 
Join Date: Sep 2005
Posts: 180
Re: Chemo-Induced Osteoporosis:beating it naturally?

Hi;

I've been doing the Zometa every 6 months for ~ 12 years and it has definitely stabilized my Bone Density. Although I still unexpectedly broke a few ribs last year.

I was 42 when I started chemo and hormone suppression and shortly thereafter was diagnosed with osteopenia.
At the2x per year level of Zometa I have had no dental problems. I believe the concern for ostecranosis of the jaw may be more of an issue if someone is taking Zometa every 6 weeks.

Like Kim I am not about to give up on my risky behaviors.....just back from a great bucket list ski trip in the Canadian Rockies. Out did myself and managed to do 30k vertical feet on my last day. For those who remember Ester, she would have been proud of me!
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-December 2017 scans clear done every 6 months

Miracles do happen
Stage IV 14 years last 8+ NED

Last edited by kk1; 03-21-2018 at 09:44 AM..
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