• What is going on when patients make it through chemo, radiation, gets a clean bill of health but continues to decline.

    Asked by lost2ca on Sunday, December 9, 2012

    What is going on when patients make it through chemo, radiation, gets a clean bill of health but continues to decline.

    Husband has sc lung ca, recently started stumbling, getting weak, lost weight, refuses to eat and drink, is sleeping constantly. Oncologist rechecked PET and brain MRI. labs ok, suggested we take him to ER. I'm lost. I have been a nurse 30 yrs. I feel we have been dumped Husband very poor patient and I am not understanding this.

    11 Answers from the Community

    11 answers
    • nancyjac's Avatar

      Cancer isn't like a cold, where you are miserable for a short while and then good as new again. Cancer and it's treatments have long term effects, some of them permanent. Oncologists don't give a clean bill of heath, they determine that there is no evidence of cancer cells. That doesn't mean there are not other conditions that are affecting his health. It is certainly possible that his symptoms are not related to his cancer or it's treatment. Make an appointment for a physical with his PCP and go from there.

      almost 4 years ago
    • FreeBird's Avatar

      How are his blood labs? Blood oxygen? Time to see another doctor for an evaluation.

      almost 4 years ago
    • carm's Avatar

      Hello I am a fellow nurse who works on the field of oncology/end of life and prior to that I worked in drug research. As a nurse you know that these treatments are such an assault on the body physically and mentally. Most chemotherapies are approved under the premise that the benefit is in the short term, that you see positive results long before you see the long term affect of the drug. Like any other compound that is toxic, it kills off the healthy cells as well, so its not a stretch to think that if it takes 3 or 4 months for hair or nails to grow back, that it might take equally that long for his energy level and appetite to return. He has been through a horrible battle and now that he is declared NED, he needs the down time, this is not unusual in oncology. Perhaps you need to ask him what his thoughts are. Sometimes a patients will to live becomes a will to leave in the blink of an eye. I understand that you are concerned, and as a fellow sister of the lamp, Im sure you have a keen sense of assessing the situation. If your gut tells you something is still amiss, then perhaps it is something unrelated to the disease, and either related to the treatment or another comorbidity of his. Either way, others are right in that if he wishes to continue this fight, you should seek an outside second opinion, perhaps from an internist who is not focused on one disease process, but on the system as a whole. If the PET shows nothing that is a good sign. Even an ER has to do a whole body check as their purpose is to "rule out" not "rule in." Best of luck to you, Carm.

      almost 4 years ago
    • Carol-Charlie's Avatar

      My suggestion would be to get him to a regular doctor. My oncologist got me on Lexipro an antidepressant. I was talking with other patients and found this to be a universal (almost side effect). Maybe you can suggest he see his doctor. I know they sure helped me get back to smiling and laughing again... Then of course you can just MAKE him go!!!

      almost 4 years ago
    • caregiver's Avatar

      I am in the exact same situation. Sleeping constantly, weak and stumbling, etc. This, after having had steroid (decadron) for about a week, during which he was on fire with plans, etc. Two days after end of steroid, back to bed constantly and back in the wheelchair. Next visit will discuss with oncologist, but it is most upsetting and I'm just about at the end of my rope.

      almost 4 years ago
    • Schlegel's Avatar

      As cancer survivors, we tend to blame everything on the cancer or chemo. These symptoms could be totally unrelated to the cancer. Could be an endocrine or cardiac or other problem. I agree with those who say to see your family doctor

      almost 4 years ago
    • cand2012's Avatar

      My father is showing this same decline, with clear follow up scans. However, he was diagnosed with LEMS, a paraneoplastic syndrome. The Mayo Clinic website gives a good overview of this. Falls and difficult walking are a major component, in fact, these symptoms proceeded and eventually led to his lung cancer diagnosis. He has continued to lose weight, has no appetite and is tired all the time. His doctor offered an anti-depressant but he refused. The doctors have no other answer for the general decline.

      almost 4 years ago
    • storknurse's Avatar

      Another nurse checking in here. I agree with everything said. He is heading the wrong way for a reason that could be unrelated to the cancer or treatment. It sounds like his brain may not be getting as much oxygen as he needs right now to keep him and lert. That can result in all the symptoms you mention. So can depression, which is also a neurochemical issue. Bottom line is he needs thorough lab tests, including checking vitamin deficiencies, a physical to look for other causes and perhaps a psychological evaluation. If everything is negative then you can on overcoming the lasting effects of the treatment.

      almost 4 years ago
    • geekling's Avatar

      Cancer treatments are more akin to torture than anything else. All the reasonable discussion in the world will not convince the body and the Id that it wasn't being attacked. These therapies can also destroy (hopefully only temporarily) the taste buds and the body's ability to discern hunger.

      He must get hydration. It is crucial. Offer him water or juice first thing in the morning. Keep a glass by his bedstand. Try applesauce or jello or ice chips.

      Try juicing to see if your hubby can't keep some food (and liquid) down that way. He is tired and for a little while it would be helpful to relieve his body of the work to digest food. Try a clean cucumber, 3 celery ribs, and cup or so of pea or sunflower sprouts as a juice. The mix is bland enough that he ought to be able to keep it down and not complain. At the same time it is protein and energy rich. If he wants some flavor, add a sprig of mint or a little bit of ginger or a squeeze of lime. This ought to strengthen him some.

      Tell your idiot oncologist that your hubby needs some therapy, that he is not bouncing back from the treatments and you want a physical therapist to work with him. Sometimes hospitals have direct connections to specialized gyms where physiologists are there for folks in traumatized conditions.

      It was actually in the midst of my first surgery, then chemotherapy, and then radiation, about 8 weeks in to 16 weeks of radiation, that I realized there was no turning back and that I was in a ruined condition. Once I was satisfactorily burned crispy and had projectile vomited through another round of drugs to my bloodstream, it took me months to recover enough to even consider how to regain any physical ground.

      Best wishes,

      almost 4 years ago
    • Joy535's Avatar

      Being a caregiver is the hardest battle of all. I have just finished (about 6 weeks ago) my first round of chemo for gallbladder cancer that spread to lymph nodes and liver. The chemo shrunk everything remarkably; however, I will start again on chemo in another couple of weeks to keep the cancer at bay. I had to stop the first series of chemo after 6 cycles because my body couldn't take any more (needed blood transfusions, etc.).

      It took me about 5 weeks after chemo stopped to get back to feeling normal. I was weak, stumbling, lost weight, and was always tired and sleepy no matter how much I slept. I felt like a zombie, and I'm sure I was depressed, too. Then, almost overnight, about a week ago, I began to feel great. I think it took that long to get the chemo poison out of my body. All of a sudden I can eat (and want to), I can exercise, smile, even do the dishes and housework, cook, run errands, and even shovel snow!

      After I had chemo and radiation for breast cancer 7 years ago it took me at least 3 months to begin feeling normal again.

      I agree with the others that you need to give him time to recover, see your general Dr. for a check up, blood work, etc., and be as positive as you can be while encouraging him to sleep and rest as much as his body tells him he needs. Try cooking him his favorite foods, but only offer him a little at each meal. Celebrate when he finishes a small plate of food at meal time. Get his favorite candy and let him have one piece as a reward for cleaning a small plate of food at meal time. Encourage him to try to eat just a few bites of nutritious food several times a day. If it's only cookies, candy, nuts, fresh fruit, cheese, crackers, meat rolls, etc. that's OK. I found that if I got outside for a little exercise (even walking around the house or block) everyday I was able to sleep less and be more alert.

      Sometimes husbands are notoriously poor patients (I hated being a patient and gave my husband grief); but try treating him like a fragile man who is trying to be independent who you've loved for many years instead of treating him like a patient. Of course you're at the end of your rope, worried, and anxious; but begin a ritual of "one day at a time", or even one morning or afternoon at a time, and celebrate your successes. Be honest with each other in your communication; ask questions like the loving wife you are instead of the competent nurse you are. Tell him how important he is to you, and how much you want to spend many more years with him. Try to help him understand that "living with cancer" is better than the alternative.

      almost 4 years ago
    • LisaLathrop's Avatar

      My situation was the same as your husband. I'd no sooner get up in the morning, have a little breakfast, then sit with a cup of tea and watch the Today show....15 mins later....zzzzzzz. The result: I had sleep apnea. Gained weight = 55 lbs. no energy to go exercise....the result: I found Visalus....maybe you know it as Body by Vi. After 2 weeks on the product, I had increased energy and significantly reduced chemo brain. I became a distributor to share with my friends. Check it out at: lisalathrop.bodybyvi.com. I also had blackouts...the result: mini strokes. Still getting infections after remission, too....the result: allergies of sorts - now on Zyrtec and the illnesses still creep up but less frequently. Unfortunately, Cancer patients have many long years ahead of them....especially Leukemia patients as they have BMTs to consider and rejection issues as well. It will take time....keep up the good work you have known as a nurse and be patient. Take time for yourself and reflect and destress when you need to. You know probably that you can only take good care of your patient if you are well-rested and take care of yourself, too. Good luck and maybe seek some advice of a sleep specialist and nutritionist, too. Check out ViSalus....it changed my life. Also....sorry to ramble....I participated in the Livestrong program at our local YMCA. Check in your area....it is for cancer patients in any stage of treatment or remission, it is FREE and they also give a 90 day family membership to the rest of your family so that you can go work out together and keep your husband on track. That program was also a godsend to me!

      almost 4 years ago

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