It can be really hard to remember all that’s gone on with my treatments especially as time begins to stretch out. So I thought I would outline them here both as a source of reference for myself but also anyone interested enough to read my blog and follow my progress.
I think one of the really interesting things with me is that I despite an extensive level of treatment I have never been worse than a stage two patient. It’s just that they have found the aggressive lymphoma early and worked to resolve it.
Since first being diagnosed with follicular lymphoma in 2016 I have undertaken a number of treatments. This page follows my progress with each.
On almost no notice I am recalled to the hospital as I have been accepted into the Glofitamab trial. This starts with an infusion of Obinutuzumab 7 days prior. This is designed to help minimise the potential for Cytokine Release Syndrome (CRS) a potentially deadly side effect. All goes smoothly.
On Tuesday 11th I start the infusion of Glofitamab as this is a dose escalation trial the first dose is a tiny 25mls given over 4 hours. I am also required to stay in hospital overnight to monitor any adverse side effects. Thankfully it’s an event free night and I am released. Dose two of 100mls will be the following week.
With all the tests for the BGB-11417 trial complete we meet again with the haematologist. The major surprise is that my lymphoma has transformed from follicular lymphoma (an indolent slow growing disease) to DLBCL a must faster growing lymphoma. This transformation is not good news, people who suffer from the transformation have a much poorer prognosis.
In the opinion of the hospital doctors I would be better off participating in a different trial. So the emphasis moves to a trial for another new drug known as Glofitamab. Moves get underway to have me accepted into this trial with a start expected in mid May.
Another PET scan is booked to check the growth rate of the lymphoma and confirm that I am now refractory to chemotherapy. A meeting with the haematologist confirms that chemo and a further transplant are no longer an option. He suggests a phase one trial of a new medicine named BGB-11417.
A number of tests are performed to confirm eligibility for the trial including another heart scan, multiple blood tests, a bone marrow biopsy and a biopsy of the lump on my neck.
The end of February sees my chemotherapy suspended. After a short stay in hospital with a fever an examination by the doctor confirms that chemo is no longer effective. Two rounds of GDP have made no difference to my lumps and with falling blood cell counts chemo is suspended.
It took a week for my blood counts to recover enough, but the day rolled around and round two of the GDP chemo took place. I also now have a PICC line in my right arm making things much easier when it comes to administering the drugs and blood products. Now we just need to see what my levels do to see if the day 8 round can go ahead as scheduled in early March.
The month starts with the day eight infusion of the chemo with a further dose expected three weeks later. In order to have the chemo, my blood counts need to be at a certain level, so I have regular tests. The result before the due date shows all three, Red, White and Platelets are very low, so a transfusion is booked instead.
60 days after my stem cell transplant, I had been scheduled for a PET scan to check how the lymphoma had responded to the transplant. Sadly the results showed that it had failed to work with new node growth and increased activity in the existing nodes. My haematologist recommended that I undergo radiotherapy then followed by an allogeneic stem cell transplant.
After a review by the haematology doctors who looked at my case, it was decided that I should start another round of chemotherapy rather than undergo radiotherapy at this time. This is because some of the enlarged nodes shown in the latest PET scan would be difficult to treat with radiotherapy. The first round of GDP, which is a three-week cycle with doses on day 1 and day 8.
I was discharged from the hospital quite by surprise on the first of December after a quicker than expected recovery from the stem cell transplant. Three follow up visits (once a week) saw me officially signed off. Sarah and I start walking to regain my fitness.
The big day rolls around with admittance to Auckland hospital for the stem cell transplant on November 12th. Six days of BEAM chemotherapy is followed by the reintroduction of my stem cells on the 18th.
The month starts with my second PET scan. At the follow up a couple of days later my haematologist informs me that the chemotherapy hasn’t been as successful as they hoped. With an area within the shoulder not really responding to treatment. It’s hoped that the final round of ICE chemo combined with the BEAM chemo used in the transplant will sort things out.
I have my final round of ICE chemo then start the G-CSF injections to stimulate things in my bone marrow so the stem cells can be harvested. It takes ten days and a shot of Plerixafor to get my CD34 count to an acceptable level. I have an apheresis line installed on the 21st and they collect the cells a day later.
A fairly quiet month with just a round of ICE chemo mid month. Followed by three nights in hospital a few days later with a temperature spike and low white cell counts.
With six rounds of R-Benda completed I have my first PET scan to make sure it has worked before moving to transplant. A very black day with the doctor on the 11th when we are told that not only hasn’t the chemo worked well, things have actually got worse. Increased node sizes and numbers with growth in new areas of the chest. An immediate biopsy of the neck is ordered to ensure the lymphoma has not transformed.
Results of the biopsy show we are still dealing with follicular lymphoma but the cells are dividing more rapidly than they were. A decision is made to start ICE chemo. before trying again with the transplant. ICE is given over three days on a twenty one day cycle.
Jun – Jul 2020
Final two rounds of R-BENDA given. I am glad the cycle is coming to an end. I visit the dentist to make sure all well and good with my teeth before transplant.
Just the monthly dose of chemo plus a CT scan after the fourth round to check progress. The results show a reduction in the size of the nodes but not the results the haematologist was expecting. It’s hoped that the final two rounds will work their magic.
Mar. – Apr. 2020
Proceeding as expected with a dose each month of the R-BENDA regime. The side effects of this are very mild and it’s been easy so far.
With the results of the CT positive a biopsy or FNA (fine needle asperation) was ordered for my neck to confirm the lymphoma is unchanged. A bone marrow biopsy is also done to ensure it’s not in my bone marrow. Results back two weeks later show no bone marrow infection and the same follicular lymphoma in my neck.
A decision is made to start a regime known as R-Benda which is Rituximab plus Bendamustine. Doses are given on day’s one and two, twenty eight days apart. I will have six cycles then probably an autogulous stem cell transplant.
After noticing the lump last month I visit my own doctor ahead of a scheduled CT scan later in the month. I show him the letter that shows the area of the lump won’t be scanned and ask him to get in contact with the hospital so it can be changed. Which they don’t do. But I manage to convince the staff doing the scan to also cover the new area.
Results of the CT scan at the end of the month show that the lymphoma has spread extensively throughout my upper chest and into the lower neck. However because it is only located above the diaphragm it is still only stage two. A biopsy is ordered.
While away in our motorhome prior to Christmas I notice a significant lump at the top of my left shoulder blade. Doing what lots of men do I promptly ignore it hoping it will go away, which of course it doesn’t.
Feb. – Nov. 2019
The months on watch and wait just seem to fly by. There is no noticeable disease progression and life seems good.
I was booked in for the biopsy on the 15th January. Because surgery was right on top of my aortic arch it was major with three nights spent in hospital to ensure that recovery went well. Results from the biopsy later proved that it was the same follicular lymphoma I had, had previously in my abdomen.
Oct. – Dec. 2018
October 2018 found me suffering from abdominal pain. A visit to my own doctor secured an appointment to have an ultrasound of the area. This showed nothing unusual but a referral back to the Haematology dept. secured another CT in November. This showed a clear abdomen but a growth in my chest, right on the aortic arch. A phone call from the haematologist in December arranged a biopsy for the following month. I had been warned to expect a relapse I just had hoped it might have lasted a bit longer.
Dec 2016 – Oct 2018
Almost two full years on watch and wait without incident.
It took quite some time for the hospital to work out what they were going to do. After being diagnosed in May it took till August and various CT scans and a biopsy on the enlarged nodes in my abdomen, for chemotherapy to start. Six rounds of R-CHOP successfully completed in November brought an end to my first encounter with follicular lymphoma.