Bone density question and mental health issue ramblings

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polluxx
Posts: 74
Joined: Thu Jul 10, 2008 9:41 pm

Bone density question and mental health issue ramblings

Postby polluxx » Tue Sep 14, 2021 10:35 am

Hi!

I finished FolFox a year ago. Since then, I’ve fallen twice and each fall resulted in a fractured tibia and torn meniscui. So I’ve been in quite a bit of pain which has taken a toll on my mental health. I’ve gone through a period of depression so bad that I was actually 5 months late on my surveillance scan. I just felt like, “I can not even.”

I’ve started working with a psychiatrist and taking meds, and I’m starting to force myself to get things done that I have been putting off. This morning, I’m getting an EKG to make sure it is safe to get my incisional hernia repaired tomorrow. A month after that, I’m scheduled to have my left knee repaired and a month after that, I’m scheduled to have my right knee repaired.

My feeling is that my falls were caused by my brain being so overactive that I’m basically a distracted walker. I might as well be staring at my phone or reading a book while I’m walking. So I’m hopeful that as the psych meds take effect, my brain will be a little quieter and I will become less of a fall risk.

My question is if FolFox could have affected bone density in any way. I’m wondering if I should ask my PCP for bone density testing? I can’t find anything online that suggests this might be the case.

Secondly, in regards to mental health, as shown in my signature, I’ve had nothing but amazing news since I finished chemo. The fact that I have been extremely fortunate considering how advanced my cancer was makes me feel guilty for not being happy and productive and appreciative every minute of every day. It is almost shades of survivor’s guilt.

18 months ago, I was in the hospital for 5 blood clots in my lungs, then they found the tumor that caused the blood clots, and the cancer was so advanced that they literally operated on me before the path report came back. But the blood clots made the surgery very dangerous. I made it through the 8 hour surgery only to have someone give me a bolus of heparin in recovery, and I started bleeding out and ended up in ICU. My psychiatrist says that it is not unusual for people who have been in ICU for more than a week to have some degree of PTSD.

I just feel like I’ve had more than my share of miracles. First, there is no way anyone would predict that I could survive 5 PEs in three lobes of my lungs. When a new nurse would read my chart, they would get to that part and yell, “Praise God!” I don’t live in a very politically correct city. LOL. Then the blood clots affected the pressure on my heart making surgery extra risky. It is never a good sign when your doctors are on their knees next to your bed holding your hand. When I was in ICU, my ward nurse brought me my clothes from my old room, and she was just sobbing telling me goodbye. There was no objective reason to expect me to survive. And once I did survive and got back the report on my tumor, there were so many factors that indicated I’d have a worse prognosis, but so far I haven’t. Even my timing was extremely fortunate. My oncologist told me that the next patient in my ICU room was our county’s first Covid case. When I was in the hospital, my oncologist, and surgeon, and gastro doctor, and anesthesiologist met multiple times a day to discuss my case and agree on a care plan. If I was in the hospital after Covid arrived, there is no way they would have the time to give me that level of attention.

And then, after all of that good fortune, I seem to be NED for the time being after only 12 rounds of FolFox. That is certainly a much better outcome than I expected.

Maybe I’m just having a delayed reaction to so much trauma which was all happening too quickly for me to react to it in the moment. I know there are so many people who would trade places with me in a heartbeat. I just feel selfish that I can’t will myself to be happy when I have so many things to be happy about.

Has anyone else struggled with something similar?
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox
9/2020 Finished FolFox
12/2020 PET Scan-NED
1-2021 ctDNA Test negative
5-2021 ctDNA Test negative
7-2021 ctDNA Test negative
9-2021 PET/CT Scan-NED

stu
Posts: 1518
Joined: Sat Aug 17, 2013 5:46 pm

Re: Bone density question and mental health issue ramblings

Postby stu » Tue Sep 14, 2021 12:47 pm

I honestly don’t know why people who have endured so much class themselves as selfish when it catches up with them ! No matter what stage you are at it you have been through a lot !
Purely an observation as a relative who has been observing the forums for a while but for a lot of people it seems to be when the physical treatment ends , the adrenaline settles and people have time to reflect that the enormity of it all surfaces !
You have already taken steps to ensures you deal with this and keep moving in a positive but realistic manner !
You need kindness and support to further your own path to wellness !
You have been quite incredible for coming through that and your honesty will also help others too!
Stay special ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

polluxx
Posts: 74
Joined: Thu Jul 10, 2008 9:41 pm

Re: Bone density question and mental health issue ramblings

Postby polluxx » Wed Sep 15, 2021 9:46 am

Thank you for your kind words!
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox
9/2020 Finished FolFox
12/2020 PET Scan-NED
1-2021 ctDNA Test negative
5-2021 ctDNA Test negative
7-2021 ctDNA Test negative
9-2021 PET/CT Scan-NED

roadrunner
Posts: 163
Joined: Sun Jan 12, 2020 8:46 pm

Re: Bone density question and mental health issue ramblings

Postby roadrunner » Wed Sep 15, 2021 11:06 am

Here’s a good, really comprehensive article on cancer therapy and bone density. I didn’t see a specific discussion of FOLFOX, but I believe the discussion is likely at least generally applicable based on the mechanisms that are discussed. I have also seen articles describing significant effects on bone density from FOLFIRI and radiation, and have no reason to think FOLFOX would not have similar effects to those described in this article. You probably can find more specific stuff with more digging, but I think it’s a fair bet that some of your troubles with fractures may well be related to therapy. I think a bone density discussion with your doctors, at least, is in order.

https://theoncologist.onlinelibrary.wil ... 11-10-1121

Your story is incredible. You’ve demonstrated great mental strength. While I’m not qualified to comment on psychological matters, it makes total sense to me that your challenges would necessitate some kind of a mindful reset or adjustment. If it were me, I’d give myself maximum room and resources to do that, and try not to worry too much about whether it’s ok to feel one way or another. In general, I think cancer patients and survivors—especially those who gone through the kind of tough challenges you have—have earned the right to feel whatever damn way they want, or whatever way they actually feel, and there’s nothing owed to anyone or anything, except yourself. I wish you the best with your recovery, and your happiness.

The only bit of advice I’d venture to give, I think you already know—keep up with those scans! No reason to come this far this brilliantly and get sloppy at the end : )
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

polluxx
Posts: 74
Joined: Thu Jul 10, 2008 9:41 pm

Re: Bone density question and mental health issue ramblings

Postby polluxx » Fri Sep 17, 2021 3:50 pm

Thank you for the link. I will bring up a bone density scan to my doctor, and see what she thinks.

I had my incisional hernia repaired yesterday. I have almost no pain when I lie still in the bed, so I’m glad I still have a couple of kids at home to wait on me. My surgeon wants me to wait 8 weeks before having my knees repaired because using crutches will put extra stress on the hernia repair. That slows down my timeline for getting better, but I sure don’t want to rush things and have to get my repair repaired. LOL.
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox
9/2020 Finished FolFox
12/2020 PET Scan-NED
1-2021 ctDNA Test negative
5-2021 ctDNA Test negative
7-2021 ctDNA Test negative
9-2021 PET/CT Scan-NED

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: Bone density question and mental health issue ramblings

Postby beach sunrise » Fri Sep 17, 2021 4:15 pm

My rad onc advised bone density scan 6 months after radiation. I do not remember if he said also good to have after just chemo but knowing chemo affects bone then yes talk about it with your doc.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Beckster
Posts: 434
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Bone density question and mental health issue ramblings

Postby Beckster » Sat Sep 18, 2021 1:00 pm

My doctor, gynecologist, sent me for a dexa scan 3 weeks after finishing chemo. I asked if it was to soon and he said no. I did the scan and it showed that I have osteopenia. I had one 2 years later and it improved....logically we know that chemo affects the bones, so I feel that he should have waited longer to give me the scan. It would not be a bad idea to get a base line scan. I also take 2000mg of D3 every day. Hope this helps.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9
Clear Colonoscopy 10/17, 11/19 :D

rp1954
Posts: 1574
Joined: Mon Jun 13, 2011 1:13 am

Re: Bone density question and mental health issue ramblings

Postby rp1954 » Sun Sep 19, 2021 3:47 am

We acted pre-emptively for tooth and bone loss on 8 years chemo. She also probably partially benefited from no (or less) chemo damage to salivation. My wife included daily oral vitamin C with 1g tablets (1 to 5, rarely) + IVC, vitamin D3 10k-50,000 iu/d (with magnesium and vitamin K2 and medical support over 10k), MK4 at 15-60 mg/d (45 mg is an approved Japanese osteoporosis treatment, human transport version of vitamin K2), glucosamine and trace minerals for her to build bone on chemo. She actually maintained her teeth and bones better *on chemo*, than off. Now slacking off generally.

We used baby aspirin and natural medicine aids for clottiness, coagulability and DVT prevention including massive fish oil (like FO triple concentrates), grapeseed extract, various other flavonoids, and sometimes mixed tocopherols (natural vitamin E or gamma E) and nattokinase, to name a few. Partly dependent on episodes of hypercoagulability or suspicion thereof. Many of these tx elements may have support values or anti-cancer cocktail value (for solo daily 5fu drugs in an immunochemo mode) for various CRC cell lines.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C


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