We are 5 months into this trip/experience of a potentially fatal disease. My family and I spend a lot of time on the phone updating others with the latest news and information, so I thought starting a blog and posting the updates here, might save everyone involved ,a lot of time and questions.
The most serious problem we have encountered is severe incapacitating/unrelenting pain both from the lymphoma and the treatment. It is difficult to watch your loved one having pain described as a 15-20 on a scale of 1-10.
So now I will give a brief summary of how we got to this point in time. The first symptoms started In late October 2010 with Linda having a lot of back pain. She had been doing a lot of bending, lifting etc while moving her mother into an assisted living center from her apartment. We assumed that the pain was from this, but it continued and got worse in November after the move was completed. A back Xray and MRI were normal. The pain then moved into her abdomen and thighs. Finally, by mid-December, the pain was so severe that she need to be admitted. A workup was normal and she was prescribed pain meds. These really didn't help much. The pain just kept increasing. After Christmas, her blood work showed LDH up to 1500 from normal (<280) in November. LDH is a marker for lymphoma. She also had an intermittent fever, another symptom.
After New Year's, an oncologist was consulted and the bone marrow confirmed large cell non-Hodgkin's Lymphoma, stage 4. A PET scan showed involvement of spine, ribs, humeri and femurs, thus accounting for the intense limb and back pain. Pain control was achieved with Duragesic patches and Dilaudid pills Q4H.
Dr Quraishi, her oncologist at Pasadena Bayshore Medical Center, started her course of chemo in January. The regime was CHOP + R. That is cyclophosphamide, adriamycin, vincristine, prednisone and Rituxin. This was given as an outpatient every 3 weeks. Each course was followed with daily Neupogen injections for 10 days to help the bone marrow recover and boost the white cells to fight infection. The course of treatment was scheduled to be 6-8 treatments. The prognosis was 80% chance for remision, but only 50% for a permanent remission. As she was already in Stage 4, her chances were less than those quoted. However, we were cautiously optimistic.
Of course she lost her hair and that was traumatic, but she is used to wearing a scarf now. In the grand scheme of life, this is just a nuisance. The bone pain melted away fairly rapidly with the first 2 treatments. However, the main side effect of the Neupogen shots is bone pain.Unfortunatley, she got that. So, now she would be free of pain until she completed the course of 10 shots and then would have a recurrence of intense bone pain - chest, legs, back and abdomen - always moving around to different locations. This would last for about a week after the shots were completed. She would only get partial relief of pain 4-5 out of 10 with the Dilaudid pills and patch during this time.
The plan was to restage after the 6th treatment (April 26th). The WBC (white count) got extremely low and the oncologist wanted an extra 2 Neupogen shots (total 12). The pain became so severe with these extra shots that she needed hospitalization again last week (May 10) for IV pain relief. He repeated the bone marrow, CT abdomen and LDH. The LDH was still elevated and the CT showed a new tumor in the liver where none had been before, so the lymphoma had become resistant to the chemo.
The next step is to do a Bone Marrow Transplant. Dr. Quraishi has arranged a consultation at Methodist Hospital in Houston for next Wednesday May 25th to get that started. In the meantime, this aggressive tumor has to be continuously treated, so a new regimen was started this week. It requires 5 days in hospital. The new regimen is Ifex, Etoposide, cisplatin, Decadron, and Rituxin.
The pain was intolerable during this admission and even with Q3H IV Dilaudid, it was only relieved to a 5-6.
On the night of May 18th as her chemo was begun, I prayed extra hard to get her some pain relief. The next morning when I got to the hospital to visit her at 8:00am, the pain was gone completely! She has not needed any meds other than her patch for 24 hours now. A miracle!
As far as tolerating the new regimen, she vomited one time with the first treatment, but not with the second one last night. Thank God for the new anti-nausea drug Aloxi, as the cisplatin is renowned for causing horrendous nausea and vomiting.
She had another great day today without pain. She even asked to have a meal from Jack-in-the-Box for supper, so I went and got it. This is the most she has eaten in the last 2 weeks.
If interested in more info on theses chemo drugs, I found this helpful web site.
Linda wants to thank everyone for the get well cards that she has received. She really enjoys getting them. Thanks also to those who have helped out with meals, driving to the doctors for her shots etc.And especially thanks for all the prayers. We know that they help.
She will be in hospital to complete this round of chemo until May 23 or 24th. The she will need up to 15 daily Neupogen shots to restore the WBC.
When she is feeling good, she would enjoy visits from friends. Please call first either her cell (281-788-8277) if she is in the hospital or our home phone (281-996-1463) when she is back at the house.
Please feel free to post comments, questions etc and we will try to answer them promptly.
Also, check back regularly to get the latest updates on how she is managing.
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