I have read so many stories on this board and have now finally decided to tell our story and see if anyone has any thoughts or knowledge on our fight.
My husband was diagnosed with NHL follicular, indolent in Jun 07. It was above and below the diaghram and in the spleen. We were told at the time that he was very sick, that this type of NHL is non-curable but with treatment you can go into remission for many years. So he had 6 treatments of CVP with rituxan. His NHL responded very well so the onc put him on a maintainence plan of rituxan every 3 months for 2 years. He had 2 of these treatments then suffered a seizure in Jun 08. The onc suspected the cancer had gone to the lining of the brain as there was something showing on the MRI however apparently it is highly unusual for this type of NHL to go to the CNS. There were no cancer cells showing in the LPs until the 4th one. The onc did not want to start teatments unless they were sure as the treatments are quite radical. So, he had 20 rounds of whole brain radiation, then an implant of an omaya reservoir for intrathecal chemo. He had 8 chemo treatments, alternating mexothrethate and ARA. The last CT scan showing good response in the brain the the splinal fluid continued to be clear of cells, however the scan also showed lesions now on the liver.
After a liver biopsy, we received the word yesterday that the systemic lyphoma is back in the liver. This is less than 2 years from the initial diagnosis. We're devestated. The onc wants to now treat with fludarabine, but only after he gets rid of the shingles that has now popped up.
My poor husband is sick of being sick. He just wants to get his strength back and enjoy the things we used to enjoy. It's so hard watching someone who is so young (53) become so frail.
We're so afraid that we'll treat this liver problem and then the next thing will pop up before we get to do the things we want to do. How do you stay positive all the time? I am generally the glass is half full whereas my husband is the glass is half empty. But I'm heading to the other side....anyone have any thoughts or comments to help? Thank you!