Still losing weight and hair

Please feel free to read, share your thoughts, your stories and connect with others!
DarknessEmbraced
Posts: 3593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Still losing weight and hair

Postby DarknessEmbraced » Mon Jan 04, 2021 1:02 pm

I'm going to try to eat either a bowl of oatmeal or cereal or some toast at lunch instead of the liquids I have been doing for a long time. I hope my stomach will behave. I'm still losing crazy amounts of weight, still get cold sweats and my hair is very thin because it's falling out even more. Something needs to be done! I need to get a hold of my GI's office too. My family doctor telephone appointment is tomorrow. I'm worried that nothing I do will stop the weight loss and hair loss. The blood tests my family doctor ordered were normal. I feel shaky and weak all the time. My strength is gone.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

roadrunner
Posts: 109
Joined: Sun Jan 12, 2020 8:46 pm

Re: Still losing weight and hair

Postby roadrunner » Mon Jan 04, 2021 4:22 pm

I usually post what I see as useful information, not expressions of emotion or empathy (quintessential male, my wife would say!), but I really feel for you right now, and since I have nothing useful to add, I just want to wish you the best for understanding what’s going on and getting better! Good luck with your phone consult tomorrow.
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%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

stu
Posts: 1487
Joined: Sat Aug 17, 2013 5:46 pm

Re: Still losing weight and hair

Postby stu » Mon Jan 04, 2021 4:49 pm

You have to be one of the most supportive people around here . I don’t have anything helpful to add but I sure hope your team does and soon .
Take care ,
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 .

Punky44
Posts: 479
Joined: Mon Oct 01, 2018 4:29 pm

Re: Still losing weight and hair

Postby Punky44 » Mon Jan 04, 2021 10:39 pm

Thinking of you! How did your doctor’s visit go today?
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4
Latest update: 3/22/21: CEA 3.4

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

DarknessEmbraced
Posts: 3593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Tue Jan 05, 2021 2:11 pm

My family doctor said all of the blood tests she ran were normal. She's referring me to a dietician. She said a dietician may be helpful. I guess it can't hurt to talk to a dietician but it doesn't treat the underlying cause. We agree that my hyperparathyroidism is most likely causing my weight loss. I need to be able to get another telephone appointment with my endocrinologist set up. I need the high calcium to stop destroying my body. It's affecting my bones, my blood pressure(on two high blood pressure medications), my digestive system and my kidneys. I need a third parathyroid surgery. I sent an email to my GI's office to see what he says about the weight loss and also the small amount of rectal bleeding I had a couple of times. It's most likely due to a fissure or an internal hemorrhoid but it still concerns me. I had bleeding with my tumor and sometimes have bleeding during my ischemic colitis attacks. So I'm not really any further ahead. My endocrinologist's receptionist said I would hear from him in early January but there has not been a telephone appointment date and time. I did ok eating the oatmeal and Boost plus protein last night. I ate two pieces of toast with peanut butter, a small amount of honey roasted peanuts and the Boost plus calories. I feel uncomfortably full right now. Thank you everyone. :)
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Punky44
Posts: 479
Joined: Mon Oct 01, 2018 4:29 pm

Re: Still losing weight and hair

Postby Punky44 » Tue Jan 05, 2021 4:03 pm

Glad to hear all the tests were normal! Hope you can get some relief for your issues soon!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4
Latest update: 3/22/21: CEA 3.4

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

DarknessEmbraced
Posts: 3593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Tue Jan 05, 2021 4:21 pm

Thanks, me too. I wish more was being done though.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Gravelyguy
Posts: 360
Joined: Thu Jul 05, 2018 6:03 pm

Re: Still losing weight and hair

Postby Gravelyguy » Tue Jan 05, 2021 7:48 pm

So sorry you are dealing with this but glad blood tests came back good.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

DarknessEmbraced
Posts: 3593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Thu Jan 07, 2021 12:25 pm

Thank you Gravelyguy. My GI isn't taking me seriously at all! I emailed his office and found out he won't see me until April 7th! He never takes me seriously and always makes me wait months to see him. Then when I do have an appointment he's still no help! I can't change doctors as there is a doctor shortage here. Now, I'm pinning all of my hopes on my endocrinologist!
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
Green Tea
Posts: 410
Joined: Mon Oct 24, 2016 10:48 am

Re: Still losing weight and hair

Postby Green Tea » Sat Jan 09, 2021 12:32 am

DarknessEmbraced wrote:... I need to be able to get another telephone appointment with my endocrinologist set up... My endocrinologist's receptionist said I would hear from him in early January but there has not been a telephone appointment date and time...

DarknessEmbraced wrote:... Now, I'm pinning all of my hopes on my endocrinologist!

If you are going to be talking to your endocrinologist soon, then he will probably need to have the results of all your recent relevant hormone tests. Some of the test results he might want to see are listed below. But the main questions right now are: Were the relevant tests ever done, and if so, where are the test results located right now -- in a file cabinet somewhere?? And how can your endocrinologist gain access to these test results before he talks to you?


You said earlier:
DarknessEmbraced wrote:...The blood tests check my thyroid, electrolytes, blood counts, iron, liver and kidneys...

This list looks incomplete and suggests that some of the blood test results that the endocrinologist will need to see might not even exist because they might not ever have been done. For example, where is the parathyroid PTH test? Where is the Vitamin D test?

You also said,
DarknessEmbraced wrote:My family doctor said all of the blood tests she ran were normal.

But if you did in fact have an electrolyte panel in your most recent blood test --presumably containing a calcium test -- then how can you now complain of high calcium levels when your doctor just said that all of your recent blood tests were normal?

Also, right now because of COVID-19, the test for Vitamin D deficiency is very important, especially for persons living in northern latitudes where there can be a shortage of direct sunlight. Do you know if your current level of Vitamin D is in the normal range?

Some reading material:

10 hormonal diseases in humans
https://www.studyread.com/hormonal-diseases/

List of hormones and their functions
https://www.studyread.com/list-hormones/

DarknessEmbraced
Posts: 3593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Sun Jan 10, 2021 1:22 pm

My endocrinologist checked my vitamin D, PTH and calcium a few months ago. He usually checks them every couple of months. Because it's been longer since I talked to him they haven't been checked. My family doctor and endocrinologist don't check T3 and T4. They only check TSH. My family doctor doesn't check hormone levels. My gynecologist did that a few years ago. They were normal. Calcium levels weren't part of the electrolyte panel. Calcium has always been a separate blood test. My calcium was slightly high the last time it was checked. It has also been borderline high which is the highest end of the range. My family doctor would see that as normal. My PTH has been high for many years. I can't take vitamin D because it makes me feel much worse. My vitamin D is very deficient but that's because of the hyperparathyroidism. Taking vitamin D makes the hupercalcemia worse. When I take vitamin D my bone pain, joint pain, muscle cramping are much worse. The last time I took vitamin D in December it caused squeezing chest pain and my heart rate went between 112-113 while at rest. Once I stopped taking vitamin D the squeezing chest pain completely vanished. Calcium affects the heart as well. I don't have a telephone appointment date or time set up to talk to my endocrinologist. I have been waiting for him to call me back. The last time I talked to him was October 7th.


Thank you for the links.

www.parathyroid.com

That site explains about hyperparathyroidism. I had both left parathyroids removed in two surgeries(the first surgery didn't fix it) in 2004/2005.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
Green Tea
Posts: 410
Joined: Mon Oct 24, 2016 10:48 am

Re: Still losing weight and hair -- Dietician

Postby Green Tea » Tue Jan 12, 2021 11:45 pm

DarknessEmbraced wrote:... She's referring me to a dietician. She said a dietician may be helpful. I guess it can't hurt to talk to a dietician but it doesn't treat the underlying cause. We agree that my hyperparathyroidism is most likely causing my weight loss.... Thank you everyone....

Where do you stand with respect to your dietician referral? Do you have your appointment set up by now?

You may want to talk to a dietician who understands IBS. There is one in New Brunswick who lists "Gut Health (Digestion, IBS, IBD)", and "Managing Food Allergies" among her specialties. She does consultations by video-conference or teleconference:

Last edited by Green Tea on Thu Jan 28, 2021 3:06 pm, edited 1 time in total.

DarknessEmbraced
Posts: 3593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still losing weight and hair

Postby DarknessEmbraced » Thu Jan 14, 2021 11:38 am

Thank you Green Tea. I haven't received a call from the dietician. Usually my family doctor refers me to someone local. Thank you for the reading material and the recommendation. I'm still waiting for my endocrinologist to call. My asthma is flaring up. I have prednisone in the house in case I need it. I am following the yellow zone for my asthma action plan. I hopefully, will be feeling better next week. I will call my endocrinologist's office next week.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
Green Tea
Posts: 410
Joined: Mon Oct 24, 2016 10:48 am

Re: Still losing weight and hair

Postby Green Tea » Thu Jan 14, 2021 12:23 pm

.
Last edited by Green Tea on Thu Jan 21, 2021 5:16 am, edited 1 time in total.

User avatar
Green Tea
Posts: 410
Joined: Mon Oct 24, 2016 10:48 am

Re: Asthma flare-up

Postby Green Tea » Sun Jan 17, 2021 7:41 am

DarknessEmbraced wrote:... My asthma is flaring up. I have prednisone in the house in case I need it. I am following the yellow zone for my asthma action plan. I hopefully, will be feeling better next week...

    Asthma action plan - Yellow zone alternatives (Ontario Lung Association)
    "...Ask patients to contact the health care provider to consider a prednisone prescription and/or provide a standing prescription
    for prednisone 30-50mg daily for 5-7 days. Insure that patients are appropriately counseled about the risks of short-term
    prednisone use
    ..."

Question: Have you ever been counseled about the risks of short-term prednisone use -- in particular with respect to your IBS symptom flare-ups?

Prednisone side effects on the GI system
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51467&p=399781#p399566


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 2 guests