Severe bone pain in lower leg

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AlexMichelle
Posts: 43
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Severe bone pain in lower leg

Postby AlexMichelle » Wed Mar 07, 2018 9:22 pm

Since last September, when I first noticed blood in toilet and that something was wrong, I also started having a dual aching pain in the bone of my lower right leg. At my first appointment after colon resection, I mentioned it to the oncologist and he said it was nothing to worry about and not related to the colon cancer. Again a month later, I told him the pain was worse and he assured me it was not cancer without doing any kind of test. I had to see my surgeon for a follow up and I mentioned the pain to him so he ordered an x-ray of my leg which did not show anything. I am not sure if bone cancer would show up on an x-ray. The pain in the leg bone is becoming so severe that it wakes me up at night. I feel like I have to rub the bone extremely hard and that still does not help. Last week as a follow-up to my cancer the oncologist ordered bloodwork up and in that the PLT was elevated above normal at 424, the MVP was below normal at 7.1%, the auto neutrophil percent was higher than normal at 79.9%, the auto lymphocyte percent was below normal at 14%, and that auto neutrophil absolute was higher than normal at 8.2%. So of course I googled why all of these percentages could be possibly off and many reputable sites state a possibility of bone cancer or blood cancer, especially after being diagnosed with colon cancer. So I called the oncologist and he had his nurse get on the phone and tell me not to worry about the numbers, that it was nothing to worry about, and that we would discuss them at my appointment this Friday. If my leg bone did not hurt so much, as well as the fact that I am experiencing the most fatigue I have ever experienced, I would not let these percentages concern me so much. If anyone has any light to shed on all of this, I would appreciate it. I can't imagine what this bone pain could be. I have now had it for six months and it is getting worse.
F 9/14/17 blood, 10/05/17 endoscopy/colonoscopy 4.5 cm tumor lower colon/upper rectum/left side -11/09/17 open Rectosigmoid Colon Resection remove invasive adenocarcinoma, moderately diff marg clear.15 lymph nodes neg malignancy. benign liver w/fibrous nodule- rectum at 15cm Tumor location: above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm. pT2pNO Stage 1. No Lynch

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

Re: Severe bone pain in lower leg

Postby CAGirl » Thu Mar 08, 2018 2:17 pm

After seeing your other posts and comments, I can see you are really worried about missed metastasis (rightfully so -- and I am so sorry about your mom.)
I love and trust my oncologist immensely. When I told him I was having severe, debilitating back pain, he assured me it would be too soon for anything to have spread to my bones (it was a quick onset of pain, following chemo.) Still, he recommended I follow up with primary care doc for Xray, and he agreed to push up my CT Scan a month. I do believe mine was normal 46-year-old woman back troubles, probably exacerbated by stress and chemo.
However, your pain has been with you since your CRC symptoms, AND it wakes you up at night. I am not sure if the Xray would show bone mets (anyone?), though my primary care doc seemed to think the Xray ruled it out for me (CT scan confirmed, though.) Plus, back pain cleared up.
I do think that if your oncologist is not taking your concerns seriously, though, you might consider changing and/or a second opinion? You want to be heard. Or -- tell him you want... what? a PET or CT Scan? -- of your leg. And tell him it will be on him if it has spread and he ignores you now. (I mean, not threatening, but helping him realize his responsibility in all this.)
Definitely be proactive.
Sure hope you feel better!
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

Re: Severe bone pain in lower leg

Postby CAGirl » Thu Mar 08, 2018 2:22 pm

Also, I am a bit miffed on your behalf that he had his nurse handle your phone call and put off talking with you until Friday. My onc -- very busy doctor at Kaiser, with a young baby at home -- always takes time to talk with me on the phone and never rushes the conversations, either.
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

User avatar
betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Severe bone pain in lower leg

Postby betsydoglover » Thu Mar 08, 2018 2:46 pm

Agree with everyone else. However, you might want to consult with a general orthopedic surgeon - they know (obviously) lots more about bones than an onc or primary care doc.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

AlexMichelle
Posts: 43
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Re: Severe bone pain in lower leg

Postby AlexMichelle » Thu Mar 08, 2018 2:48 pm

CaGirl, thank you for your thoughtful post. It meant a lot. I agree with everything you said. Tomorrow, I meet with Oncologist and am going to bring it up again. I'm going to make sure that he 100% understands that I don't feel well, that my fatigue is nothing ever experienced before, that I'm concerned about my blood work being abnormal, and that my leg still hurts. I'll ask him how most people find out that the cancer has gone into the bone.

About your back pain, I had a really awful lower back pain for three years. Last year, 2017, the same year that I was diagnosed with colon cancer, I started having gallbladder attacks for the first time and had my gallbladder removed and another procedure to cut into the common duct that so the stones could not get stuck there. It was like a miracle! Immediately the back pain that I have been dealing with every day of my life went away. It had something to do with the gallstones/gallbladder disease. I was under anesthesia four times between February and November 2017. What a year! Before I had my gallbladder removed, my billirubin was always in the way above the normal range. For over 20 years the doctor said not to worry about it and it was Gilberts syndrome. .... Something a person is born with. Not to worry about it. Now that my gallbladder has been removed, my billirubin is in the normal low range and the chronic back pain is nonexistent.

I agree that the Oncologist should have called me himself and explained to me why the abnormal blood work up numbers are nothing to worry about. When you see all of the numbers that have to do with bone marrow In bright red on the lab report and in the abnormal ranges, of course one is going to be concerned. One more thing, because I caught this year's horrible flu three weeks ago, perhaps that is why my fatigue is so severe. That's what I'm hoping. Thank you for your post
F 9/14/17 blood, 10/05/17 endoscopy/colonoscopy 4.5 cm tumor lower colon/upper rectum/left side -11/09/17 open Rectosigmoid Colon Resection remove invasive adenocarcinoma, moderately diff marg clear.15 lymph nodes neg malignancy. benign liver w/fibrous nodule- rectum at 15cm Tumor location: above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm. pT2pNO Stage 1. No Lynch

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

Re: Severe bone pain in lower leg

Postby CAGirl » Fri Mar 09, 2018 8:48 pm

How'd it go with the onc appt today?
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

Joecool1983
Posts: 44
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

Re: Severe bone pain in lower leg

Postby Joecool1983 » Thu Mar 15, 2018 9:42 pm

Back in October/November 2017, I was having severe leg pain also. Just in my right leg. I couldn't put any weight on my right leg at all. I couldn't move my right leg at all. I went to the emergency room twice in the month of December. Once in mid-December and the 2nd time, 3 days after Thanksgiving, after having severe fever and uncomfortable explosive diarrhea, I passed out/lost consciousness in the shower. This was after a falling out with my original Surgeon over a disagreement over a colostomy. The 1st trip to the emergency room, I had an X-RAY, which showed nothing. I was kept until Tuesday. The doctor treating me said if I wasn't going to follow my Surgeon's advice, all he could offer me was brochures for palliative care and referred me to a pain management clinic, which prescribed me Oxycodone and gave me nerve pain injections that didn't help. The 2nd time I had an MRI which showed the results of previous MRIs. A thickening of the presacral tissue. The Emergency room doctor said to the nurse that there was nothing they could do for me, and to "Cut Him Loose". 5 days later, I met with the new Surgeon. Less than a minute into the appointment and reading the scans/reports,he identified it as a severe presacral abscess/Infection. 10 Days later he had me seeing the Interventional Radiologist for an Abscessogram to start draining the abscess/infection. Also saw a GI doctor who found 2 leaks in my anastomosis that were leaking stool into the abscess. Pain started going away imediately. I would consider a presacral abscess/infection as the cause of your leg pain and push to see the IR.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan


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