MUST READ: Misdiagnosis of Liver abscess to Liver cancer
My mom is 50 year old woman, she has Myasthenia Gravis and Hep B.
In April she travelled from Egypt to Oman where my dad works and she developped a fever and back and stomach pain. Doctors did nothing there but ibuprofene and paracetemol. When she returned we went to doctors and they tested her for viruses all came negative except CMV and EBV showed previous infection not current. Drs preecribed painkillers and antibiotics like Augmantin but she was still getting worse until she screamed of pain and we sent her to the hospital where she got loads of painkillers and antibiotics, Dr said the viruses will go on their own and staying at the hospital might be bad for her if she caught something.
After going home she just was perfectly fine for one day, she even cleaned the kitchen.
We took her lab results and went to a doctor and prescribed her a medicine for CMV called Valcyte, this medicine is hell, it has ridiculous side effects she took it for a week and then everything went downhill, she gets chills, fevers, severe acute bone pain that propagates from down up and high temp.
Doctor told us to do CT, so we did. Thats when we got bad bad news.
It showed a 9 X 10 11.5 mass on her liver and a portal vein thrombus. We took her to another hospital, they didnt even bother with us, he told us its terminal and theres no point of hospitals.
He couldnt do biopsy because her blood INR was low.
We did another CT at the hosp it was the same but sizes was lower.
They released her and we took her to another hospital, her Dr was the one that prescribed her Valcyte. She did nothing except trying to give it to her again but mom refused to ever take it again. Thr rest was pain killers and constant trials to do nexavar but my mom was too sick for it, they lost hope and still no biopsy and released her.
We went home and this time we were hopeless, we did one last chance by visiting a famous oncologist who suspected its metastatic and ordered an ultrasound sonar, tomography and spinal chord MRI.
They found a mass in her douglas pouch and assumed its the primary cancer.
we took her again to the hospital after her blood pressure reached 60/40 and pulse was 130.
this was a new hospital, they immediatly ruled out CMV and EBV and assumed its bacterial infection, they made a blood culture and gave her antibiotic called Zyvox (Linezolid) and she greatly improved, they later 2 two biopsies that revealed septic fragments and abscess, the mass on her uterine wall( douglas pouch) is not there.
They gave her back hep B meds and we still give her antibiotics, she started to get back on her feet, no bloating, minimal ascites.
abscess isnt completely gone and portal vein still thrombosed.
but she is better than before but I have some concerns if someone can help with :
1- she has a very low appetite and feels disgusted at most food
2- she has an appetite for salt ??
3- she has really excess saliva, its not a swallowing problem its excess saliva
I know it might be medications but her Myasthenia meds have been being taken for 20 years so I Think those arent the problem
she also takes aldactone, ivabradine, pantoprazole, contorloc, calcimate, ursoplus.
PS: During her worse stage of sickness she used to have hiccups and an urge to spit, both were resolved when she started the appropriate antibiotic. But the spitting problem returned later although blood culture showed no growth and her complete blood culture was all fine except her white blood cells was 15,000
PPS: I am sorry for the long post but it might open a door that doctors ignorance and inability to read a scan closed
Last edited by wo_saad; 08-14-2013 at 04:45 PM.
Hello Wo_Saad and I am sorry to meet under these circumstances. I read your entire post and wish that I could provide some meaningful insight for you but really can't I am sorry to say. I just wanted you to know that we are here and listening.
Regarding your Mom's situation, I don't know what to say. If you were in the U.S., I would urge a second opinion at a major medical teaching center. Even better would be one that specializes in abdominal issues including abdominal cancers. From what you have written, it doesn't sound like a cancer but, like everyone else here, I am no expert. We are all just travellers in this world who happen to have cancer. Along with us are our friends, family members and caregivers. We are not doctors (a few hang out here but not many, this place is for us) and so, cannot render an opinion that would be worth anything more than what you paid for it (remember that was nothing).
So, that is all I have for you, I am afraid to say. It sounds like you are located somewhere in the Southern Asia/Middle East area. If you can do as I have suggested it mayhave some benefit to your Mom, I hope you get the answers you need for her. Good luck.
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
wo_saad- hi welcome Kerms correct we can know but you may ask the doctor if all her medications are producing a mouth problem such as Thrush that can be caused by medications
also her meds may be affecting her taste buds .
the chemo and meds affected moms sense of taste and she added salt to her food as well.unless her doctor says no then let her put whatever she needs to on jher food to get it down- mom likes dipping chicken in either honey or sweet sour sauce.
when her mouth isnt irritated she dips alot of food in ketchup.
ask the doctor if he can give her something to help slow down or dry up the excess saliva- this may be giving her a full feeling swallowing alot because of the excess and in turn sucking down air with each swallow- which is why its not good to eat nad talk for people with colostomies. I know you didnt say your mom had that but I was just using that as an example of problems with air swallowing (bloaty/full feelingkeep us posted and I hope a solution is found for your mom.
April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
port-port rejection-port removed 1week.
Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
transfusion central line TPN 1 month.
oct-09-surgery tumor ,colon and jejuneum removed.
xeloda reduced. severe dehydration,heart attack.
mar-11 return to original site-oxyplatin,5fu
dec-30-back to chemo erbitux camtosar
Jan-16 injections neulasta and aranesp
feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
starting a regimine of celebrex
aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
sept/10-12-good urologist report one kidney functioning well for now.
oct/23/12-chemo pill Stivarga(regorafenib)
dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
Feb/21/13 neulasta injection
Feb/22/13-blood transfusion. still taking stivarga.
mar/20/13-arenespt injection rehydration and magnesium IV
mar/21/13-acute renal failure-kidney infection
april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
swollen hand no apparent reason black spots in vision off and on. both cleared up.
may/22/13-home oxycodone for pain shoulder neck arm
june/1/13 pain subsided off oxy onto aleve
june/09/13-pain back off aleve on vicodin
june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
june24/13-last day of radiation-on steroids
july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
july 23/13 vicodin cut in half blood transfusion.
sept/6/13-off all pain meds since late aug
scan results fracture in spine mid back
sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
nov/7/13-edema both legs and one arm on lasix since oct.
nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.