Bill

Ptosis. Both upper eyelids with right slightly more pronounced than the left.

8/16/04 Update : Medical oncologist was informed this morning about the recent increase in yawning. He states that this suggests brain tumor activity. CT scan of head ordered to be done following next week's chemo plus referral to her neurosurgeon. Same old story ... More waiting and worrying.

countrygirl97 Anyway, financially and insurance wise, I had a whole lot of worries but everything worked out just fine and it probably would have if I worried or not ////////////////// Consider yourself very lucky in this regard. Dealing with and battling the financial hurdles that keep popping up with cancer treatment can be overwhelming. This is a major source of stress in my household as medical expenses pile up and you never know with certainty what's covered and what isn't. An individual in our neighborhood has a daughter with breast cancer with mets. She currently has her house up for sale in order to cover her daughter's unpaid medical bills. My wife's medical oncologist told me once that fighting cancer can break you financially faster than any other disease.

The medical literature states that yawning can be a symptom of lung cancer and brain tumors ( my wife has both ). But, this is going to be a tough symptom to monitor and quantify since there are other non-cancer causes. My wife started yawning at the same time that her sputum worsened. Time will tell if this is a coincidence or a meaningful new symptom.

Any experience or thoughts about this ?

Elaine Bill Obviously I am no expert having done no chemo, but it could well be that the blood is in response to the tumor breaking up due to the chemo. I think someone once posted that on here once. Ask the Dr. if that is possible. ///////////////// Elaine : Thanks for the reply. Yes, the oncologist did mention to us on our very first visit that the blood-tinged sputum symptom may get worse. He said that this worsening may either indicate a worsening of the tumor ( BAD ) or a breaking up of the tumor ( GOOD ). Talk about leaving us hanging ! BTW, the nurse oncologist told us yesterday that the oncologist will most likely not order any lung testing ( PetScan. etc. ) until after the 3rd or 4th chemo cycle has been completed.

Anybody out there ( patient or caregiver ) familiar with this symptom and it's typical presentation during the course of chemotherapy ? My wife begins chemo cycle # 3 on 8/16. This symptom suddenly started worsening a few days ago. More red color and quantity to the sputum. Not severe enough to concern the oncologist but I'm sensitive to seeing any symptom getting worse. To confuse matters further, her other lung symptom ( involuntary gasp ) has NOT gotten worse. Maybe even slightly better.

Maureen I. RE : WBR I am also looking to hear from those of you that have had this procedure (or your caregivers) to find out what your experience was like during treatment, immediately after treatment, and long term after effects on the quality of your life. ///////////////// My wife's final WBR treatment was 6/3/04. She lost her head hair and eyebrows. Scalp was slightly burned and still is dry and scalely looking. She felt weak and tired most of the time. Some loss of appetite. No apparent psychological or neurological changes so far.

Elaine I recently developed the "involuntary gasp" that you speak of. I had never heard of it before. I think it might be the same thing. It's like a sound that comes out like babies make at the end of a cry? Is that what you mean? Anyway, I was told this might be an indication of worsening SOB. I see you were given a different explanation. Hmmm. I sure wonder what it DOES mean. /////////////// Elaine : Your description is the same as my wife's. Her doctors told us that this gasp is caused when a lung tumor ( on the outer edge of the lung ) intermittently rubs against the diaphragm. Best of luck to you.

Justakid I started chemo and radiaition and about three weeks into treatment I noticed breathing was worse. My lung has since collapsed 20% and I am having shortness of breath now (of course). But yes, once treatment started I did note difficulty breathing and shortness of breath, that I had not experienced before. ///////////////// My wife completed chemo cycle #2 about 10 days ago. She has had two (2) respiratory symptoms from the beginning ( blood-tinged sputum and involuntary gasp ). Gasp is net better and the sputum is net worse. IMO not very encouraging as I'm more concerned about the sputum. BTW, she has never complained of shortness of breath or difficulty breathing even though they seem to be common complaints.

Robet, et all: Yes, the tumors are regrowing in the brain and in the lung. The tumor in the pit region did not come back. These are in a new area of the brain. I thnk they are surface ones < 1 cm each. The one that "killed the pituatary and hurt his vision" was 1.5 cm. Anyway, I tried to tell the U of chicago that the only treatment that has "worked" so far was the radiation, so WHY THE HECK aren't we doing in again in the brain first then mess with chemo. He just is so insistant that you don't have to treat brain mets until you have symptoms where as Mayo says "Umm, if you have symptoms you have brain damage and probably can't correct that. SO, better to deal with it before that UNLESS you are REALLY REALLY sick with the lung mass." ///////////////////// JD : My wife has 4 large tumors in her brain ( the RAD onc called them large - no exact measurements given ). These tumors have either shrunk or stayed the same size since completing her whole brain radiation. But, nevertheless, all 4 tumors are still present in her brain which is unsettling. All 3 of her doctors ( RAD onc, med onc, neurosurgeon ) state that until she produces symptoms they want to leave these brain tumors alone. No radiosurgery, no nothing. Not clear what they will do if these tumors get bigger. As some of you may know, in most cases chemo ( delivered into the arm or central line ) has a very limited effect ( if any ) on brain and spinal cord tumors as most chemo drugs either don't cross the BBB or do so poorly. Best of luck to you on resolving this issue.

Thanks for the replies but it looks as though my question may have been misunderstood. I assume that most of you had one or more respiratory-related symptoms BEFORE starting chemotherapy. I am interested in hearing whether or not you noticed an improvement, worsening, no change, etc. in those pre-treatment respiratory symptoms as the course of chemo progressed. I'm not asking about chemo side effects. At least in my wife's case the chemo side effects appear to be distinct and separate from her pre-treatment respiratory symptoms. Thanks again for the replies.

My wife just completed her second cycle of chemo a week ago. The medical oncologist tells us that it's still too early to check progress with a Pet Scan, etc. Sounds like he wants at least 3 chemo cycles in before ordering such diagnostic tests. So, the oncologists ( medical and radiation ) are relying heavily on my wife's description and impression of her symptoms and how she feels for guidance. If you've been reading my posts you know that my wife's complaint of hip pain led to the testing and examination that revealed mets to her hips. There was no plan to check her hips. In fact, to the best of my knowledge, her hips were never even X-rayed prior to this. She has had two ( 2 ) known respiratory symptoms since before chemo began to the present. Periodically coughing up blood-tinged sputum and an involuntary gasp ( supposedly caused by the tumor hitting the diaphragm. There appears to have been a net improvement in these two symptoms with these two chemo cycles complete but I got to tell you it's not clear cut to me. Some days one or both of the the symptoms are bad enough that it makes you wonder if there is any net improvement at all and, instead, the symptom(s) are suddenly worsening. Next day these same symptoms may be much better. IMO monitoring symptoms as a guide is very difficult and confusing, especially when the oncologists are counting on an accurate description.

I would appreciate any input on the topic of change(s) in symptoms while on chemo. In my case, I'm particularly interested in hearing about changes in LUNG / RESPIRATORY symptoms. Did key symptoms that were present prior to starting chemo get steadily better, get worse then better, get worse, get better then worse, no change, etc. during the course of chemotherapy ? If you can tie change(s) in symptoms with approximately how far into chemo ( i.e. how many cycles, etc. ) that would be of interest also. Thanks much.

Thanks for the replies. BTW, Fay A., we are in Orange County. After speaking with the 3 doctors my wife and I feel comfortable postponing the radiation FOR NOW. Reasons mentioned by these doctors for not recommending chemo / RAD combo in her case included Gemzar, her general health condition and the impact of chemo plus radiating a large area ( pelvis ) and simply not wanting to radiate that area until absolutely necessary ( since it can only be done once ). Thanks again.

The medical oncologist said No ! The radiation oncologist said No ! ( due to Gemzar ) The neurosurgeon wasn't sure and deferred to the radiation oncologist. Therefore, the wife stays the course ( chemo only ) till a re-evaluation in late Sept. ( or if hip pain worsens )

FYI : The bio describes my wife's condition. RE: her chemo dosage levels, I believe that she is on a 28-day chemo cycle. Gemzar 1200mg. and carboplatin 200mg. on day 1, Gemzar 1200mg. on day 8, then off for a couple of weeks. How do these dosages measure up to you people with a similar CA profile ? High, low, average ? Maybe the oncologist would have to lower the chemo dosages in order to include radiation ? Maybe he doesn't want to do that ?

from my 8/4/04 Bi-Lateral Hip X-Ray post I asked : Thanks to Jane and all of the other positive thinkers. The oncologist offered to stop chemo and order radiation for the pelvis. But, he tried to discourage my wife from doing so at this time. He would like to continue with the chemo and hold off on the radiation until later OR until her hip pain worsens. She ( we ) decided to trust his judgment on this and postponed the radiation. He basically argued that there are several pitfalls to interrupting the chemo and administering radiation at this time. Do you agree ? And, has anybody been faced with a similar situation ? If so, what did you do ? Thanks. BTW, my wife's bio is added per Don Wood's suggestion. //////////////////// I'm sure that I have read and heard that some cancer patients are receiving chemo and radiation at the same time. As I stated above, my wife's oncologist told us unequivocally NO ! It's one or the other and he added that if the blood #s deteriorate, scarring develops ( ? ), etc. with the radiation ( in her case radiation to her pelvis ) that could further delay resumption of, or even lessen the effective of, the chemo. Thanks in advance for any input or opinions on this confusing subject.

Anybody with a similar condition to my wife's and / or on similar drug regimen experience varying degrees of sweating at night ? Usually more like dampness on the trunk and behind the knees. Usually not forehead. Other times it can be more severe sweating requiring a change of clothing. Also, has anybody been given a medical explanation for this ? Thanks.

My vote is on "old stuff", too. Are these findings going to affect the plans for her chemo/treatment? Jane /////////////// Thanks to Jane and all of the other positive thinkers. The oncologist offered to stop chemo and order radiation for the pelvis. But, he tried to discourage my wife from doing so at this time. He would like to continue with the chemo and hold off on the radiation until later OR until her hip pain worsens. She ( we ) decided to trust his judgment on this and postponed the radiation. He basically argued that there are several pitfalls to interrupting the chemo and administering radiation at this time. Do you agree ? And, has anybody been faced with a similar situation ? If so, what did you do ? Thanks. BTW, my wife's bio is added per Don Wood's suggestion.

Don't let doctors trivialize your symptom(s), especially if the symptom(s) is persistent. My wife's FIRST and ONLY symptom was persistent low back pain. Low back pain that was repeatedly misdiagnosed as nmt low back pain secondary to a chronic UTI. This misdiagnosis continued to be made right up to her visit to the ER a day before the correct diagnosis was made. It took the sudden onset of severe low back pain with lower extremity dysfunction ( triggered by an enema ! ) for the ER physician to recognize that something much more serious was going on.

" Conclusion : Probable Extensive Metastatic Disease Of The Pelvis. " " Findings : There is extensive heterogenous bony destructive change involving the entire left pubic bones and ischium. Possible pathologic fractures of the pubic bones are observed. The right pubic bone shows similar changes centrally. " P.S. This news is particularly discouraging because the updates on her brain and spine were favorable. The oncologist says that this damage may or may not reflect CURRENT tumor activity. In other words, at least some of this may be old damage. Not sure if this is a realistic possibility or he is just trying to comfort a very upset patient.

First, thanks much to all for the warm welcome that I received following my first post last evening. My wife experiences pain at the infusion site ( arm vein ) when the GEMZAR is administered. The nurses tell her that this is a common problem with GEMZAR. They say that ~ 50% of the GEMZAR patients end up having to get a central line because of this. My wife is in no mood for a central line at this time ( " I am sick and tired of being cut ! " ) They decrease the drip rate and apply heat which helps but this isn't going to solve the problem. She wants to try taking a Vicodin before treatment but I don't think that will sufficiently kill the pain. The Dr. and nurses state that the GEMZAR should be administered over ~ 30 minutes. They've got her drip rate so slow that it takes ~ 1 1/2 hours ! They also told her that the slower the drip rate the greater the damage to her blood. Does anybody have any experience with this problem ? If so, any suggestions as to how to remedy it would be greatly appreciated ? Thanks.

Since her May ' 04 diagnosis my 57 yo wife has had two lower spine surgeries to remove a large tumor, whole brain and lower spine radiation ~ 11 treatments, currently just completed her second cycle of chemo ( Gemzar, carboplatin with Kytril, decadron, weekly procrit, monthly Zometa ). Vicodin, Ativan, compazine, Flexeril on hand at home. She has lost all of her head hair and eyebrows ( from whole brain radiation TX ) and ~ 30 lbs ( ~ 140 down to ~ 110 ) The surgical incision down her lower spine is red, inflammed and painful. Curently on Levaquin 500mg. daily for 7 days even though the neurosurgeon doesn't think that it's infected. He and the oncologist are puzzled as the surgeries were in mid-May. Obviously, some sort of stubborn inflammation going on. I will know more about this on Friday when the neurosurgeon tells her his read on the bilateral hip X-rays that he just ordered ( due to her complaint of left hip pain ) along with full spine X-rays ( presumably to check the positioning of the instrumentation - she had 3 destroyed vertebrate removed now all supported by metal ). He has prepared her for the possibility that the hip pain is due to further spread of the cancer to the hip. The only good new to report at this time is that her respiratory symptoms ( i.e. bloody sputum and involuntary gasp ) have improved substantially since starting chemo. But, I'm not certain that this is necessarily an accurate indication of improvement. Just an educated guess. She is dealing with alot of chemo side effects but the irony is that the supportive drugs, specifically Kytril and to a lesser extent procrit, are producing alot of uncomfortable side effects as well. Lastly, she gets a weekly CBC. The #s are all over the map. Other than the hemoglobin value ( as a procrit indicator ) which is easy to follow I don't see how these Drs. can determine much of anything else accurately by referring to these blood values. Almost all of the #s are out of whack and some of them swing wildly from one week to the next ! Thanks for hearing me out.