gothodgkin

[gothodgkin]

1st day, 5th cycle

According to my schedule, I had to start the 5th cycle last week. Because, of the suspicion of an ischemic event we had to delayed it. After some tests two doctors determined that I was able to continue.

Last week, I was worried and anxious. Not willing to continue. Trying to make my mind between following the medical protocol for my condition and to listen to my body. As I feel weaker each cycle, it is harder to endure and to distinguish known side effects and something else. Mimi, my wife, reminds me everytime to live "yon jou alafwa" (which mens "one day at a time", from a song in Haitian Creole).

Like every morning, Mimi and I have breakfast together, we read something positive out loud together, and we pray Jehovah God together. We usually ask God to give us strength to endure, to protect us with His wisdom and to give us peace of mind. Today, the 1st day of the 5th cycle, I felt really calm and with peace of mind. There were some minor issues during chemo, but we remained calm the entire process. Didn't felt stressed like other days, didn't felt anxious neither.

I thank Jehovah God first, because in these days He promise to "sustain" his loyals that are sick (Psalm 41:3). In the future, things will be very different (Isaiah 33:24). For now, I do everything I can to seek for medical help, and I try to collaborate in multiple ways. I love life.

I appreciate the effort and goodwill of the medical team, nurses, concierge, meds mixers, and more that I can even list. Sometimes we wrote them letters, or bring them something snack, or we simply chat with them.

#hodgkin #lymphoma #hodgkinslymphoma #hodgkinlymphoma #beacopp #cancer #chemo #chemotherapy #doxurubucine #adriamycin #cyclophosphamide #etoposides

[gothodgkin]

2nd day of 4th cycle

Today, was a good day. After two failed attempts to find a proper vein, the third was a success. The personnel did the best they could, but my veins are too affected by the accumulated doses.

At night, by 4am I woke up as usual to go to the restroom. When I tried to flex my left leg I felt a pain. I checked my whole leg trying to find something irregular, also punched to find a sensitive spot, but nothing was found. I visually compared both legs and everything seems similar. I suspect it is the CIPN (Chemotherapy Induced Peripheral Neuropathy).

My current treatment (BEACOPP without Procarbazine) contains two cytotoxic drugs that are known to cause CIPN. These drugs are: Etoposide and Vincristine. The former is administered the first three days in a cycle, while the latter is given on the eighth day.

Overall, as I said at the beginning it was a good day. Another time, I felt Jehovah accompanied us and protected us with his wisdom. His wisdom make us remember how to act and collaborate with all the personnel and that creates a peaceful atmosphere. Also, He give me the strength to continue with this aggressive treatment, which I constantly think to quit.

#Hodgkin lymphoma #hodgkin #lymphoma #nodular #sclerosis #beacopp #cipn #neuropathy

[gothodgkin]

End of 2nd cycle: blood count results

I received and compared the blood count results from last saturday. Red blood cells, haemoglobin and hematocrit, as expected, are low and going down. However, for some reason white blood cells increased a bit. Also, my platelets are still increasing and surpassed the limit of 400-450. After some research, this seems to be a "reactive thrombocytosis" which means my body is producing more platelets due to a reason, which we still don't know. In the following spreadsheet you can see all my blood count from this year.

Green = increased compared to previous count. Yellow = decreases compared to previous count. White = no change.

Today, I'm in the hospital and I have two appointments: haematology and gastroenterology. More on that in another post.

#hodgkin #lymphoma #hodgkinslymphoma #hodgkinlymphoma #beacopp #cancer #hlns

[gothodgkin]

Blood count tests

Right now, I'm in a laboratory to check how my blood counts are. Will try to update with the results and comparison from last months.

#hodgkin #lymphoma #hodgkinslymphoma #beacopp #cancer

[gothodgkin]

BEACOPP: Day 1 (1st cycle)

According to the dosis regimen for BEACOPP the first day consist of 5 out of 7 cytotoxic drugs (as shown below highlighted in red).

As documented before, for my diagnosis the doctor took out the P (for Procarbazine) for my treatment. For the 1st day of the cycle I will be taking (EAC) as intravenous infusion (1 hour each) and P (for Prednisone) a 75mg tablet.

How was my day in the hospital?

We arrived at 8:00am, but the treatment started by 2:00pm. We finished by 5.30pm. The reason for the morning delay, is because all treatment cubicles were already in use (there are 12-14 cubicle at the hospital) and we were put in a queue. During the queue I told Mimi a bad joke, that was so bad that she had uncontrollable laugh (we both cried laughing; I don’t remember the joke sorry).

Post Mortem

At the hospital, I felt regular. I drove back home and was feeling uncomfortable. And when I arrived I felt a bit dizzy like floating, heart rate increased a bit and had a headache, it felt horrible inside, but nothing serious.

I didn’t had appetite, but I had half of a chicken soup. Then I took the P (Prednisone) at home by 8:00pm. Didn’t feel any change in my body. Later by 9:30pm had the other half for the soup, ate a slice of bread with peanut butter and lemon jam. Almost that I drank a lot of water so I could excret the toxicity of the drugs ASAP.

We went to bed by 10:00pm, woke up a 1:00am because my bladder told so, and had a good night sleep until 5:30am.

I thank Jehovah God for giving me the second best gift in life: Mimi, my love, my friend, my support... and now, my nurse.

#hodgkin #lymphoma #beacopp

[gothodgkin]

Custom Treatment

On Monday 22nd I had another appointment with my doctor appointment. She explained to us that the recommended treatment protocol will be adapted to my case.

The recommended protocol for me is BEACOPP which is usually administered in cycles of 21 days. There's a more intensive regimen with cycles of 14 days. In my case it will be cycles of 28 days.

Also, in any of theses cycles the days 1, 2, 3 and 8 the patient need to go to the hospital for IV drugs and from days 1-14 take oral drugs at home. All these aforementioned drugs are cytotoxic parts of the chemotherapy. In my case, I will only take oral drugs from days 1-4.

Finally, the BEACOPP treatment, where each letter is a drug, consists of 7 drugs: 5 IVs and 2 oral drugs. In my case, I will get all IVs and just one of the oral drugs for a few days.

#Hodgkin #Lymphoma #BEACOPP

[gothodgkin]

Another doctor appointment

Today, we had our doctor appointment. The doctor and the committee confirmed the evidence: the cancer is back. They recommended a more aggressive chemotherapy regimen called BEACOPP. But first, they need to run a few tests for: blood, viruses, vitamin D and creatinine. Also I have to get an ecography. All this to determine if my body is strong enough to support this new treatment.

#cancer #hodgkinslymphoma #beacopp

[gothodgkin]

PET Results

Today, we got the results from the last PET scan:

PET study with evidence of metabolically active lymphomatous disease in lymphadenopathy described in the thorax, abdomen and pelvis.

I'm feeling fine and relaxed to know that. More on that later.

#cancer #lymphoma #hodgkinlymphoma

[gothodgkin]

Another PET scan

Last week, I had a doctor appointment and they recommended me to have a PET scan. That will my second one.

#hodgkin #lymphoma #cancersurvivor

[gothodgkin]

Your embrace, healing my wounds

Teach me to breathe

Teach me to move

PTSD, anxiety

Genetic disease

Thanatophobia

#afterchemo #hodgkin

[gothodgkin]

662 days after

Yes, I'm still alive. I'm one of the priviledged one that can live after death.

I have visited the doctors several times since my last chemo, and she said there's no trace of Hodgkin. However, my body isn't the same, I still feel weak, have headache, backache, sore throat, pain in the mouth, pain in my right knee, an injury in the perineum and so on. Ah, forgot to mention weird patterns in my tongue.

I don't want to thin further as it steal my little energy that is on my body.

#hodgkin #hodgkinlymphoma #hodgkinslymphoma #afterchemo #chemo

[gothodgkin]

Friday, October 28th, 2016

I'm glad to announce that I completed the last chemo from the last session.

It was a loooong (more than 6 months) journey with up and down. I learnt so much about myself and life. I felt the hand of Jehovah God between all the processes, not only because I finished, but because the strength I had to endure all of this with a real positive attitude.

Now, I will be able to join my congregation physically after 1 month from now. Also, during the next 3 months my doctors will check on me if the cancer is really gone, or if it returns.

💪💪💪

#hodgkin #hodgkinslymphoma #chemo #abvd

[gothodgkin]

Wednesday, October 12th, 2016

This chemo session was nice and fast. It took like 4 hours to complete.

1 more to go.

#hodgkin #hodgkinslymphoma #lymphoma #vincristine

[gothodgkin]

Tuesday, September 27th, 2016

All right! Today was my 10th chemo! Got a few issues getting the Vincristine because it was out of stock at the hospital. We had drive to another hospital to buy it. Thanks Jehovah, we did it!

Apart from that, I learnt that Vinblastine is back on market, again. Let see, if I can reschedule a meeting with my doctor and see if we can get Vinblastine instead of Vincristine.

Two more to go!

#hodgkin #hodgkinslymphoma #lymphoma #chemo #abvd #vincristine

[gothodgkin]

Monday 12th, September 2016

This chemo session was good. Although there were some issues with the drainpipes, I didn't feel any kind of pain regarding the Dacarbazine.

Today, I'm driving back home. Just so you know, that after a chemo session I'm not dead. But upon I touch home, I'm dead sleep. 💤

#hodgkin #hodgkinslymphoma #lymphoma #chemo #abvd #ninth #vincristine

[gothodgkin]

Friday 9th, September 2016

Today, I had an appointment with my doctor where I brougth my tomography results. She was accompanied by another doctor. Then she told us that they can't see any trace of tumour caused by the cancer. She added that my lungs looks clean.

BEST DAY EVER

#hodgkin #hodgkinslymphoma #hodgkinlymphoma #lymphoma #avbd #tac #scan

[gothodgkin]

Thursday, August 25th, 2016

Recently, I got my 8th chemo. That one was really fast. Usually, I spend aprox. 5 hours during the session. This time it took exactly 3 hours. Thanks to Jehovah God, my family, the nurses and the equipment, everything went fine.

#hodgkin #hodgkinslymphoma #lymphoma #chemo #abvd #vincristine