Pneumonia, Non-Hodgkins B-cell Mediastinal Lymphoma, SVC Syndrome, R-CHOP Chemo Therapy, Heart Enlarged, PE And DVT, Gave Heparin, Severe Back Burn, Bleeding. Help.

Question : My husband is 57 years old, 179 kg., 6'5" who has had pneumonia over the past 4 or 5 winters. He was diagnosed with non-Hodgkins B-cell mediastinal lymphoma. The tumor begins at the base of his diaphragm and extended into his neck, compressing on his neck in several places causing him to feel as if he were being strangled. He also has SVC syndrome with the SVC being 95% occluded. His left arm and chest were greatly swollen with swelling in both legs as well, but less severe than in his left chest and arm. He was given one round of chemo using the R-CHOP, but in less than 48 hours he started feeling a tightness and pain in his left chest. He was given pain medicine and a CT was done. Cardiologist, Pulmonologist, and Radiologist were consulted. Multiple PEs were found in the lungs and a DVT was found near his left ankle. Previous testing before R-CHOP showed heart to have no problems. After chemo, PEs, and DVT, testing showed right side of his heart was enlarged due to PEs, entire body, including face swelled tremendously -- his face was unrecognizable for several days. Doctor started heparin for PEs and DVT. Also, his neck became swollen and had what we called a "doughnut" around it -- it eventually resolved along with the choking sensation. Within a day or two of the heparin being started, he developed a bleed in his back, near T-10 -- as if the pain in his chest went straight through to his back. This caused him tremendous pain. As the pain increased in his back, it decreased in his chest. Before the second round of R-CHOP two weeks later, my husband expressed his concern that if he were given the chemo before the hematoma in his back resolved that he would bleed again expanding the bleed. The doctor said he did not think that would be a problem, but that if it did, he would give zinecard to avoid muscle damage. The morning following the second round of chemo (a Sunday), my husband had a severe burning pain in his back (he was still on pain meds due to the pain in his chest) and he felt and we could see a huge mass in his left lower back that was very warm to the touch. Dr. on call said zinecard would not be helpful and refused to give it and only authorized increased frequency of pain medicine. This, of course, did nothing for shrinking the mass and did little for the pain. The blood began tracking down his back and a new bleed started down low, just above his "backside" crack and then began spreading below that onto his bottom. His entire lower back was black, blue, and XXXXXXX red and then it started tracking to both sides. He felt like he was on fire. Nothing else was being done for him. No one had any answers for us, but they wanted to do chemo again in two weeks. Needless to say, my husband was NOT agreeable to that as he feared he would bleed again. His red blood count numbers dropped to 6.4 and 18. In the hospital, we put large hospital ice packs on his back and sides -- it took 12 of them and we had to keep refilling them about every 5 to 6 hours. The cold would bring on muscle spasms, so he was given a muscle relaxer as well. That was 6 weeks ago -- the mass in his back is still the same size and my husband is still in terrible pain. Some of the swelling has gone down in his left arm and chest and tremendously in his feet and legs. He has not received any other treatment and the doctors seem to have no clue as to what caused the bleed in his back or how to proceed. After the second round of chemo, we were told that the tumor shrunk by 30% and that the SVC had opened up some, but no one knows why he is still swollen or why the huge hematoma is not resolving. The tracked blood in his back has mostly resolved, but the area is darkened where the blood had been. The lung has created new pathways through the PEs and there is no word on the DVT. After 32 days in the hospital, my husband was released and is still on large doses of pain medicine, Zofran, and Lovenox. He is nauseated, in terrible pain, and is not eating. Four weeks ago, his blood tests showed that he has low protein and low albumen. Nothing is being done about this and my husband now has "hanging skin" from losing too much weight too quickly. I have brought this to the doctor's attention several times, but he has done nothing about it. My husband has dropped almost 30 kg in 2 months and the doctor has not adjusted his Lovenox dose, which is weight based, and he has not even gotten a weight on him. Our last visit was 3 weeks ago. My husband lies in bed all day feeling sick and in pain. He was once a very strong man who endured lots of pain without a word of complaint. In 30 years of knowing him, he used pain medicine only when his wisdom tooth was extracted years ago and when he broke his RIGHT (NOT LEFT) ankle 25 years ago. He says that it is a burning, searing pain in his back and he and I believe that the chemo is in his muscle and affecting his nerves as well. It is very difficult for him to walk because he can't lift his legs. I have to physically help him move his legs. Can somebody please tell us what to do BEFORE he becomes paralyzed and the tumor starts growing again from lack of treatment. We are getting NO HELP from the doctors. The doctor now wants him to do radiation and we have an appointment scheduled for Thursday with the Radiation Oncologist. I doubt that he will even be able to get out of bed to get there. For the last 2 weeks, he has become incredibly nauseated and for no apparent reason, he has started losing his hair again -- it is all over his pillow. This seems to us to indicate that he still has that chemo sitting in his body. He also has lost all of the hair under his left arm (which is the side that is still quite swollen). His bowel became impacted last week and our doctor told us to go to the ER and said that my husband would get a neuro work-up while he was there. He indicated that my husband would be admitted because he asked us to go to a different hospital than the one we wanted to go to because he preferred the Oncology service there -- there is no Oncology in the ER, only on the Oncology/Hematology floor of the hospital. After spending 15 hours in the ER with no water given to my husband (even though I had requested that the nurse give him some as he could not urinate for them to test it and he was losing a ton of fluid through his bowel), the ER released him with only running an MRI, but he was NOT admitted nor was any neuro testing such as a nerve-conduction study done or recommended. My husband was taken out of our vehicle when we arrived at the ER directly onto a bed because he is so incredibley weak and wasted. We were told that the MRI showed no change and I asked no change from what because my husband had never had an MRI before. The nurse could not answer the question. My husband now has no control over his bowel --his stools are liquid and just runs out of him. He is wearing diapers to be on the safe side. We fear that the chemo has damaged his bowel, which we wonder is what maybe caused the impaction in the first place (I know the pain meds can cause the bowel to slow, but that does not necessarily mean that that is the only reason for it to have occurred). He has lost all sensation in his left arm, hand, and fingers and his chest and arm are still swollen on that side. He has lost the sensation in his right arm, hand and 3 fingers on his right hand. He has lost sensation in both of his legs and feet. He feels numb and has tingling sensations in all arms, hands, legs, and feet. We feel he is becoming permanently paralyzed. We also fear him getting radiation because we do not know if he still has chemo agents still in that swollen mass and muscle in his back. Is it safe to have radiation if chemo is still in the body? Is radiation 5 days a week for 5 weeks straight safe or usual? Also, since chemo was injected directly into his vein and was carried through the blood and the bleed in his back restarted within hours of the second round of chemo and chemo was still in his blood, can you please explain why the doctor insists that there was no chemo leaking into my husband's back? Does it somehow magically disappear? As I mentioned, it was only hours after the chemo injection that my husband's back started bleeding again. We fear that my husband has been chemically burned on the inside and that his muscles and nerves and maybe tissues have been and are still being destroyed by the chemo. Is there anyway to get that stuff out of his back at this point? Is there an expert out there that can help us? We are so DESPERATE!! He needs to be seen by someone who can help him!! He feels like he is slowly dying. PLEASE, PLEASE HELP US!! We still have children at home and we do NOT want them growing up without a Daddy (like both of us had to). Thank you so much!!

Dear Dr. Shah:

We would like to thank you so much for your helpful answers to us! We went to the Radiation Oncologist office today for them to XXXXXXX my husband. My husband has not been seen by any Oncologist for more than 3 weeks and we are concerned that his weakened condition, including the severe neuropathy has not been evaluated before proceeding further. The radiation is to shrink the tumor itself. The PET that he had 3 weeks ago showed cancer to be limited to the tumor in his chest. Here are our 2 questions:

1. Why do they want to radiate his neck if there is no tumor there? From what we have read, he can have severe swelling and may have difficulty swallowing from neck radiation. Since he has had nothing but bad results with his previous treatment, we are afraid that doing this may be a very bad idea for my husband. The Radiation Oncologist was in another office today, so we were unable to ask a lot of questions, but she spoke with my husband via phone and told him that she would be radiating the neck and his chest because that is how it has been done for 40 years. That is a poor answer as I would like to know what study can be pointed to to say that not radiating the neck, which no longer has any signs of cancer, is contraindicated.

2. Will my husband's back with the bleed (hematoma) still there (it has not changed in size in over 6 weeks) be further damaged by the radiation? It seems like a bad idea to proceed, but my husband's Oncologist, who is out of town (again) told his assistant to tell us to proceed with the radiation even though we will not have an opportunity to speak with him BEFORE the radiation is to begin. We don't even know what is going on -- we feel like we are out of the loop and it is our lives that are being affected. How do we find another doctor or do all cancer patients (and their loved ones) feel this way?

Thank you again, so much!! It is so difficult to see my husband almost completely paralyzed by the neuropathy and nothing is being done about it or the bleed in his back. If you know of anything that can be done about his neuropathy (which may be due to the vincristine as all limbs and extremities are affected), please let us know.