Please bear with me and kindly read the long passage of my father's condition.
After the two cycles of VDT-PACE, my father underwent an autologous stem cell transplant (ASCT) on 21st February.
He was feeling much better and his reports were fine as of 20th April.
But, on the 76th day post his transplant (10th May), he had immense pain all over his back. The pain was so bad that he was not able to even lie down or sit.
He had an MRI on 11th May, which I have attached, as "mri 11th may, 2015" and a PET-CT which I have attached, as "PET-CT SCAN 15TH May, 2015.pdf", which showed myeloma spots all over his spine. The doctor told it was extramedullary. He also has become a nonsecretor as his M-spike / kappa-lambda were normal.
Also, some nerves were compressing and he was not able to pass stool.
His radiation on spine started.
After 10 days of radiation and 1 cycle of bendamustine, which was till 25th May, we went home back. From 24th May onwards, he had immense pain in both his thighs and he was not able to stand.
On 6th June, he again had MRI of spine to check the effect of radiation which I have attached as MRI CERVICAL,DORSAL & LUMBAR SPINE WITH CONTRAST 6TH JUNE, 2015 (1).pdf We were told that 2 out of 3 tumors were not present anymore.
But he started having headache, nausea and giddiness.
Then on 8th June, he had his MRI of brain which I have attached as "MRI BRAIN WITH CONTRAST, 8TH JUNE 2015.pdf" which showed the presence of myeloma outside his brain.
We were told that there were tumors along the cerebellum (I exactly don't know). He was not able to swallow food and whatever he ate came back from his mouth. He had difficulty drinking liquid too.
Meanwhile, his platelets and hemoglobin continuously decreasing.
On 5th June, his platelets were 16000 and hemoglobin was 9.9, whereas on 7th June, his platelets were 13000 and hemoglobin was 8.
On 9th, he was given platelets, so on 10th and 12th were 35,000 and 32,000 respectively. Today's hemoglobin is 12 , TLC is 2.5 and platelets are 23,000.
He was given dexamethasone 40 mg for 4 days, and radiation to the brain has started, and till now he was only eating porridge with a lot difficulty and could not eat solid and coughs continuously whenever he ate anything. Also, he cannot stand because of his pain in thighs. His chest x ray is clear.
Today, he had difficulty even in drinking juice / water. He spit everything he drink back. Maybe, this is because the tumors at brain are compressing nerves(?).
Also, he is having excruciating and unbearable pain in his thighs. Due to which he cannot stand.
Today is the 3rd day of the brain radiation and also the second day of pomalidomide (Pomalyst, Imnovid). (This is the first time he is ever been on pomalidomide).
Our doctor advised us to stop the treatment and go home. I understand there is not much hope left, but we want to try.
My father best responded with VDT-PACE.
Please suggest what can be done. Is there no hope? Can we try something else? What do you think should/could be done right now? Can I consult/go anyone else? It is very painful for us to see my father like this but he still wants to fight.
Please please give your valuable opinions and thank you very very much.
Surbhi
MRI BRAIN WITH CONTRAST, 8TH JUNE 2015.pdf- MRI BRAIN WITH CONTRAST, 8TH JUNE 2015.pdf
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- MRI CERVICAL,DORSAL & LUMBAR SOPINE EITH CONTRAST 6TH JUNE, 2015 (1).pdf
- MRI CERVICAL,DORSAL & LUMBAR SOPINE EITH CONTRAST 6TH JUNE, 2015 (1).pdf
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- PET-CT SCAN 15TH May, 2015.pdf
- PET-CT SCAN 15TH May, 2015.pdf
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- mri 11th may%2C 2015.jpg (233.77 KiB) Viewed 813 times
