Bill

My wife has yet another medical malady mystery that hopefully Dr. Joe can solve. Any readers that have had this experience please offer your opinion, as well. My wife has two ( 2 ) surgical incisions from anterior and posterior spinal surgery to resect a large tumor mass. One of those surgical incisions ( ~ 11 inches in length ) runs directly down her lower spine. That same area was also irradiated. The surgeries were performed in May ' 04 and the radiation occurred during June ' 04. A large portion of that surgical incision, as well as the immediate surrounding area, that was exposed to radiation is inflammed and VERY sensitive and painful to this day. That area has become my wife's # 1 source of pain. ( BTW, her other surgical incision, located on her side, has healed just fine ) Her radiation oncologist, medical oncologist and neurosurgeon have absolutely no idea what's causing this persistent inflammation and pain. The area has been X-rayed and everything, including the instrumentation, looks fine. There's no evidence of infection but just to cover that base she was run thru two courses of antibiotic therapy with no improvement. The radiation oncologist says that he can't even blame the radiation at this point in time because, in his opinion, any radiation-induced inflammation would have subsided long ago. He can only say that something is causing a hypersensitivity of the nerve endings in that area BUT he has no clue as to what the cause is. He doubts that even high-dose Neurontin will cure the problem. He's never seen this before. Thanks in advance for your opinions on this very painful condition.

My thanks to all of you for the replies. My wife has an appointment with her medical oncologist this afternoon. Hopefully, her swollen shut eyes will get his attention. I'm as certain as I can be that it's the Aloxi. He needs to put her back on Kytril. Thanks again.

SEVERE swelling and redness around both eyes ... Bluish - purple patch-like rash on the back of the scalp ... headache ... dysuria ... severe constipation ... abdominal pain ... fever ... unusual amount of tiredness & sleep. Nobody can figure out what's causing this but my wife was switched from Kytril to Aloxi at the same time that these symptoms started. Look at this >>>>>>>>>>>>>> Drug Information: Palonosetron (Systemic) Aloxi side effects More Common Difficulty having a bowel movement (stool); headache Less common abdominal pain; acid or sour stomach ; belching; bloated full feeling; blood in urine; bloody or black, tarry stools; blurred vision; burning, crawling, itching, numbness, prickling, "pins and needles" , or tingling feelings; change in vision; chest pain or discomfort; chills; confusion; continuing ringing or buzzing ; cough; decrease in frequency of urination ; decrease in urine volume; deep breathing; diarrhea; difficult breathing; difficulty in passing urine; dizziness; dizziness, faintness, or light-headedness when getting up from a lying or sitting position suddenly; [dribbling] painful urination; drowsiness; dry mouth; excess air or gas in stomach or intestines; excessive sleeping; eye irritation; fainting; fast, pounding heartbeat or pulse; fear; feeling of warmth; fever; flushed dry skin; fruit-like breath odor; general feeling of discomfort or illness; happy; heartburn; hearing loss; hiccups; impaired vision; increased hunger; increased thirst; increased urination; indigestion; irregular heartbeat; joint pain; large, flat, blue or purplish patches in the skin; light-headedness; loss of appetite; muscle aches and pains; muscle tremors ; nausea or vomiting; nervousness ; numbness or tingling in hands, feet, or lips; painful knees and ankles; pain or discomfort in arms, jaw, back or neck; passing gas; pounding in the ears; raised red swellings on the skin, the buttocks, legs or ankles; rash; red, sore eyes; redness of the face, neck, arms and occasionally, upper chest ; restlessness ; runny nose; seizures; shivering; shortness of breath; slow heartbeat; sore throat; stomach discomfort, upset, or pain; sugar in the urine; sweating; swelling or protruding veins; trembling; troubled breathing; trouble sleeping ; unexplained noise in ears; unexplained weight loss; unusual tiredness; unusually deep sleep; unusually long duration of sleep; vein discoloration ; weakness or heaviness of legs. /////////////////////

kimmek For all that were wondering about the deveolping brain mets, I asked Mom's radiation doc about this yesterday and she had the answer and most definatly put my mind at ease. Brain mets do not just appear in the brain, the have to travel there. A cell breaking off from a tumor can travel to the brain. But while under going chemo the chemo if working will be killing all the cancer cells floating around, along with the tumor. So knowing that, i guess there is a really good chance brain mets will not develop while ubdergoing chemo. ////////////////////// This is an important topic that deserves clarification. While a few chemotherapy drugs are thought to cross the BBB they do so poorly ( by IV infusion ) and most competent oncologists consider their effect on the brain and spinal cord to be clinically insignificant or sub-therapeutic. It's certainly true that chemotherapy administered by IV infusion, if effective, will attack tumor cells elsewhere in the body that could be destined for the brain or spinal cord. That's certainly beneficial. Thankfully, alternate delivery systems and radiation are available to directly attack brain and spinal cord tumors. I only mention this because I've discovered that some cancer patients with brain mets that are receiving chemo by IV infusion are incorrectly assuming that this treatment is directly attacking their existing brain mets with equal vigor. Best of luck to all.

Thanks to all for the USEFUL replies. Yes, MaryAnn, my wife receives Dexamethasone as part of each chemo session. I'd be more inclined to blame the Dexamethasone if the timing and swelling fit better. But, it could be the cause. She has no apparent swelling anywhere else on her body. Just around her eyes.

My wife has some persistent swelling around the eyes. This started ~ 2 + weeks ago, just before completing chemo cycle # 3. At first, just the right upper eyelid was slightly puffy and droopy then it was both upper eyelids. Not alot of change but enough to notice. Since then the lower eyelid area under both eyes has gotten puffy ( bags ). No more droopiness of either upper eyelid. Now it's just a general appearance of puffiness around both eyes. Appears worse upon arrising in the morning and improves a bit thereafter. The rest of the face doesn't appear swollen and there is NO noticeable swelling anywhere else including in the neck, hands, ankles and feet ( edema ). Her treating physicians have ruled out tumor-related causes and kidney disease. They don't know what is causing it ! They are saying that it must be an allergic reaction to some product that she uses. We can think of nothing new or different that she uses. The radiation oncologist mentioned the Decadron IV that she receives at each chemo session as a remote possibility. I say remote because he agrees that the timing and symptoms don't fit very well. The only change in her drug regimen ( which did occur about the same time that these symptoms started ) was being switched from Kytril to Aloxi. Based on my wife's DX, treatments, etc. ( see bio below ) does anybody have any ideas or experience with this symptom ? If so, please provide details. Thanks much.

stand4hope This is the RIGHT place to vent, rant, express your fears, concerns, yell, scream, whine or complain. GO FOR IT!! .... ///////////////// ... selective permission to do so, at Peg's discretion, of course.

Justakid Now I sound like a baby, whining and complaining. But I really DON'T WANT TO DO THIS TOMORROW!!! //////////////// Well, here's my very unpopular reply. Don't go ! Based on your postings and bio you are an ex-smoker that appears to have access to the full spectrum of cancer treatments and medical care, INCLUDING psychiatric services ! Wish we were so fortunate. IMO your persistent negative attitude is self-defeating.

rlrose He finished June 17th ... The main complaint he has now is that he thinks his taste buds were damaged with the radiation and now most everything he eats has no taste or a bad taste. ////////////////// My wife experienced diminshed or loss of taste during the latter part of her WBR treatment. The radiation oncologist assured her that this symptom was common and transitory. Sure enough, within a few days after completing her WBR / spine radiation her taste returned to normal. You should get this checked out further if this symptom is still present since completing WBR on June 17th.

rlrose The onc. is recommending Gemzar for Wayne. I would like to know the possible side effects and if anyone has seen good results with this type of chemo. ////////////////// My wife just completed three ( 28-day ) treatment cycles with Gemzar and Carboplatin. Her main side effects were fatigue, weakness and G.I. Based on the just completed CT scans ( chest, abdomen / pelvis ) there was little if any net improvement in her condition as compared to pre-chemo CT scans. Also, because of the pain associated with peripheral vein administration of Gemzar ( as well as the risk of vein damage ) you may need to get a central line. About 50% of the Gemzar patients being treated by my wife's oncologist had to end up getting a central line due to Gemzar administration problems. My wife has thusfar resisted a central line and is relying on pain meds, heat and a slowed drip rate ( which her onc doesn't like ). Her biggest improvement is to her brain and spine but that was due to surgeries and WBR / spine radiation, not the chemo.

MJ bill and joyce - how are your spouses doing now that the wbr treatment is over? i have heard from joyce a few times. also, i was wondering how long the docs waited to have another ct and/or mri of the brain after treatments. //////////////////// My wife just had CT scans of her brain, chest, abdomen & pelvis. MRIs of the brain and spine were done in late June and will be repeated later this month. Her current bright spot is the brain and spine. Based on the June MRI results and these latest CT scan results there is net improvement in her brain and spine thanks to the spine surgeries, radiation of the spine and WBR. Unfortunately, her lung results are worse than May. She now has " numerous " nodules in BOTH lungs. In May the right lung was clear. The abdomen / pelvis results were basicly unchanged from May EXCEPT there is now a spot on her liver. Unfortunately, they can't get a good look at it as it's partially blocked by one of the metal plates in her spine.

MJ was wondering how long it took before you noticed hair loss. my mom is half done with her treatments. ///////////////// My wife had a whole head of hair and eyebrows throughout WBR. It all suddenly fell out in just a few days time starting a week or so after completing WBR.

stand4hope Many of the people here had no "lung cancer symptoms" at all - the lung cancer was discovered because it had metasticized to other areas of the body and caused problems, i.e., headaches from brain mets, bone pain from bone mets in the spine, legs, hips, ribs, etc. and the lung cancer was later discovered as the primary cancer. ///////////////// If you had bothered to read my wife's bio before responding you would have noticed that what you state is exactly what happened to her. She only started developing lung symptoms just prior to starting chemo. RE: occurence of hemoptysis, a majority of the lung cancer patients that we see regularly at my wife's oncologist's office eventually experienced this symptom. I don't feel comfortable taking a poll in the chemo room. I thought that this forum would be a more appropriate location to ask such a question. Guess not.

tnmynatt Bill, I've not heard of this before. But, I'm sure someone has and can help you. I will be praying that the symptoms subside and that a miracle is on the way for your wife. Prayers for you, also //////////////////// tnmynatt : Thanks for your kind words of support but you must be misunderstanding my question. Hemoptysis (bloody, coughed-up sputum) is one of the most common symptoms of lung cancer.

cbysea1 I hope someone can help me here ... It was pertaining to free or discounted medicine if one was in a certain income bracket and or/and has no insurance. ////////////////// Cbysea1 : Ask your oncologist for the brand names of the drugs and the name of the pharmaceutical company(s) for those drugs. Contact the company(s) directly. They should have a toll free phone #. If your particular pharmaceutical company(s) offer a patient assistance program for those drugs they will tell you and they will inform you about their elgibility requirements.

During the course of chemotherapy did this symptom steadily improve, stay the same, get worse or fluctuate ? Thanks.

Thanks for the replies. Keep them coming. Text material has it's place but nothing beats hearing from patients or caregivers that have personal experience with cancer symptoms, treatment, etc. Recently my wife developed ptosis ( including swelling ) mainly of the right eye and some facial swelling. More symptoms to monitor and worry about ! All three of her treating physicians are surprised and very concerned that these symptoms have suddenly appeared. CT scans of brain, chest, abdomen and pelvis were taken yesterday. Results and the bottom line next week.

john I am not sure if this is what you are asking about but some people develop swelling in their face due to vena cava syndrome. //////////////// Yes. I'm asking for input on facial ( including neck ) symptoms that anyone has experienced due to their cancer such as swelling, ptosis, paralysis, pain, etc. Also, any facial symptoms attributable to chemo would be of interest.

Ann Dawn, I"m going to have to differ with others opinion that have posted here but that's what this board is all about...opinions. My husband had what I consider to be the world's best oncologist. He was very kind, sensitive and caring. He is considered to be at the very "top of his field" in cancer treatment and research. My husband was diagnosed with sclc, extensive. Mets were in liver and spine. On our first visit after biopsy, our oncologist said......Incureable, inoperable but with treatment we can buy some quality time. Never have I considered that to be insensitive and I am a very densitive person. ////////////// If you reread my earlier reply you should be able to see that we are basically in agreement on this issue. IMHO the oncologist is either aware of other health conditions ( cancer or something else ) that Dawn's message isn't clarifying OR, if her mother's condition is being accurately described, the oncologist is an idiot that needs to be dumped ASAP. Based on my personal experiences and study of this disease the cancer profile that Dawn describes carries with it a ( widely held ) good prognosis. IMO my wife has a medical oncologist that tends to candycoat too much of his opinion. I appreciate the upbeat tone but I want honest opinion and a credible explanation when obvious problems arise.

dawnb72 I am very thankful that she is at that stage if she had to be at any stage, but the doctors all seems so dismall. She finally got to see the Oncologist today and he told her that there was no cure but he could "buy her some time" . Is it just me or do you think that was rude and insensitive? Mom had just begun to have a little hope and was getting her spirits and sense of humor back and he shot her down in flames. ////////////////// IMO given the cancer diagnosis that you have provided it makes no sense for an oncologist to say that he can " "buy her some time". My wife's med oncologist made a similar comment to us but she has stage 4 NSCLC with mets throughout her body. There has got to be more to your mother's cancer diagnosis than you have provided OR she has some concomitant health condition that he's considering OR you need to find a new oncologist. Good luck.

Can anybody share their experience with the development of facial symptoms related to their cancer ? Please provide as much detail as possible ( i.e. symptom(s) description, doctor's opinion, any treatment, outcome, etc. ). Thanks.

cheri I am just curious as to what doses/frequency some of you and your loved ones are receiving from Procrit? /////////////////// 40,000 units every Monday unless the weekly Hemoglobin read ( CBC every Saturday ) is 12 or higher.

dawnb72 She has not had the bone scan yet or the head ct. From her previous ct scan the doctor did say that she only had one tumor and is is localized in the right lung. He also said that her surounding organs looked clear. Is that good news? Should I be worried about her brain? ///////////////// You need to wait until there is some results to even worry about. Based on your post your mother has a single tumor in the right lung. IMO that usually carries a good prognosis. Most of the LCSC readers are dealing with metastatic cancer. Quite a different world. Should your mother have mets you can get some good input from this forum. Good luck.

babesdaughter Ptosis is a symptom of Horner's Syndrome....have you talked to the doc about it??? ////////////////// Yes and CT scans of the chest, abdomen, pelvis and head are scheduled for the end of this month.

dawnb72 I have researched it extensivley and I feel that I know enough about the disease but I cannot seem to find any answers out there about survival rates. Are there any miracles happening out there that I can tell her about. ////////////////// IMO there are alot of variables that go into the outcome for a person with cancer. Prayer and / or luck, timing, type of cancer, location, treatment regimen, general health, genetics and so forth. IMO this disease still has more unknowns than knowns. Survival rate predictions and prognoses ( esp. those made early on ) are notoriously inaccurate. My wife has already outlived her first predicted life expectancy. The med onc made this prediction just after her second spine surgery but before radiation and chemo had even begun ! Sounded more like a statistical opinion. I hear alot of educated guessing, speculation and the like when I speak to these treating physicians. Maybe tell your mother about Lance Armstrong. I have no reason to doubt his story ( but check it out to your satisfaction ) and, if completely truthful, he went thru the usual treatment grind and appears to have beat his cancer. A mix of the above-mentioned variables clicked in his favor. Good luck.