The unfolding of the saga…

When I first started my treatment, I was clueless about what the next few months would be like. We had never been really close around anyone who was being treated for cancer. So, there were a lot of questions. How long would it actually take? How are the drugs going to be administered? What would it feel like? Will it hurt? What activities will I be able to do or not do? Will there be any other restrictions, for instance, regarding diet? What ‘side effects’ would I actually have? Would I be able to live a normal life during the treatment? What about life after the treatment?

I guess many such questions are at the back of minds of most patients and no doctor prepares the patient for all of these.

What option then is one left with except to let the events unfold as in a stage play, trying to extract bits of information every now and then from any doctors in the extended family and sometimes from the internet if one is brave enough to read. (Initially, I guess I was overwhelmed with the turn of events in my life and didn’t even ask my doctor much nor did I want to read much about my condition. However, that changed after the next couple of months, when I felt I could handle the situation better, with the support of my family behind me.)

So, I thought, I would at least tell my story, to the best of my ability, so that anyone who is about to undergo similar treatment and those caring for them, may be informed of what actually happens. I think one would feel more confident and more in control minus the surprises and anxieties, at least that popped up for me.

However, let me mention again that cancer treatment for each type of cancer, from the combination of drugs to their dosage, to the methods employed (chemotherapy, radiation or surgery or combination or all of these) varies. I feel, though, my story would help give a broad indication.

This is how the events unfolded:

After a tumour showed up in the initial CT scan (with contrast), things began to move quickly. (Here I may mention, I developed an allergy to the contrast a few hours after the scan which caused shivering and intense pain in the legs. So, I guess, one should check about this with the doctor beforehand). The ENT specialist that I had been seeing so far had suggested immediate removal of the mass. Not satisfied with this opinion, we checked for references to another hospital).

I was referred to a team of oncologist/hematologist who advised a nasal endoscopy and a biopsy to determine whether the tumour was malignant.  The procedure was done by a head and neck surgeon under general anesthesia. It took about a couple of hours from the time I entered the operating room till the time I was out. The doctor took out the tissue from the nasopharyngeal region through the nose. (However, I was told earlier, if that  is not possible, for instance, due to infection, an external incision would be made in the mass from the neck (where the swelling was visible)). After the recovery time of a couple of hours, one can go home the same day though it does take a couple of days to get over the effect of the procedure. One feels lack of energy and drowsy, which I understand is due to the effect of the general anesthesia.

The biopsy results took about 5 days and that is also when the staging of the cancer is done (IIE in my case). Subsequently, I underwent a PET scan (with contrast). This time I was given an anti allergen to prevent reaction from the contrast after I informed of the allergy.This scan confirmed the areas where the tumour had spread (neck and cervical region).  Around the same time, one has also to undergo the ECHO and blood tests.

The haematologist (who from then on was the consulting doctor for my treatment) then explained the chemotherapy regimen that was going to follow (6-8 cycles with a gap of 3 weeks between each cycle, following the R-CHOP medication protocol). (It may not always be possible to adhere to the 3 week schedule depending on the health of the patient. Also, one could schedule around one’s convenience, a couple of days before or after the scheduled 3 weeks).

First, however, there was a small procedure for bone marrow aspiration to be undergone. In this, the lower back was anesthetised. The doctor took out some spinal fluid with a special needle to test  whether the cancer had spread to the bone marrow. The procedure itself took about 15 minutes and one has to rest for about 20 minutes thereafter before one can go home.

Chemotherapy may be done in day care, where you are admitted for a few hours or for longer in the hospital, depending upon the circumstances in each case. Even for administration of intravenous drugs, the method varies. For some patients, a canula (a small tube generally inserted in the vein on the back of the hand or the arm) is used, for others, a PICC line (which is a longer tube inserted in the vein for longer periods).  In my case, the drugs were administered through a canula.

The drugs are administered as per the protocol for each patient. In my case, as mentioned in my earlier blog (of June 20), the first drugs were administered overnight and the rest were administered in day care.

An intrathecal (injected into the fluid surrounding the spinal cord) drug (IT MTXT) was administered through a procedure called lumbar puncture towards the end of each chemo session. This drug is prophylactic (preventive), which is given to prevent the cancer from spreading to the cerebrospinal fluid (fluid inside and around the brain and the spinal cord).

(Lumbar puncture, as the name indicates, involves insertion of the needle in the lower part of the spine. This may be done for administration of medicine (as in my case) or for extracting a sample of fluid from the spine for testing. One is supposed to lie down on one’s back without a pillow after this procedure for about an hour.)

Additionally, experiencing nausea post the chemo session, I asked for an anti emetic injection in subsequent sessions to be given towards the end, though that controlled the nausea only to a certain extent.

After all drugs have been administered, the attending doctor provides the discharge summary (including the medication) and one can go home!

If anyone has something to share on their treatment or their loved one’s, I would be very interested.

Target Cancer

Family and friends had often suggested the idea to join the blogging community for long. However, I wondered what could I say to the world that would not already be out there on the web.

Then, cancer dropped by, to make life different. And since, for the last almost 6 months, life has been mostly hospital visits, doctors, blood tests and medicines and living with the popular ‘side-effects’.

And again, the suggestion came from the doctor too to write a blog. So, convinced that I really had something to say that was unique to me, I started writing, not just this blog, but otherwise as well.

Cancer has brought me closer to the realisation that there may be many people out there who may not have the means to get themselves treated. Or, some may not get diagnosed at all due to lack of resources.

Of course, some work is already being done by many organisations to assist people without resources to get themselves treated for cancer. However, we are a huge population and the reality suddenly seems so stark. That something must be done, whether financially or in terms of contribution of time and effort by many of us.

Having come face to face with it firsthand, I can understand how cancer must debilitate many physically, and then financially.

Cancer treatment is expensive especially in our country where many people, especially the poor, live without a medical insurance. Where many live on daily wages, where can the question of paying premium for insurance arise? Many people in our country are not even aware of such a thing as medical insurance.

Therefore, the need to work towards this cause. I am currently in the process of trying to put together something towards this.

The medical details / the side effects:

For those interested in how cancer affects the human body, here are some details. I felt this could be useful for newly diagnosed cancer patients coming as it is from someone who has actually walked that path. Many a times, the patient is not prepared for all the effects, as happened in my case. The doctors do not always prepare the patient for these effects. Perhaps, they are not sure how the patient shall react to their mentioning it. However, I feel, the patient is better off if he knows what’s in store and there are less surprises in this context. It is true that two patients with the same disease could react differently to the treatment. However, I still feel a broad indication of the effects could be given to the patients.

I was diagnosed with nasopharyngeal cancer (Diffuse Large B Cell Lymphoma (Non Hodgkins) – DLBCL), a type of head and neck cancer (Stage IIE)  in December 2011. This diagnosis followed after about 3 months of frequent throat troubles. The cancer had spread in the neck and cervical regions, seemingly in ­about 5 months or so. The antibiotics would only give temporary respite and then even that relief also stopped after a while. I had difficulty reading aloud to our son. The lump in the throat became visible. This was diagnosed as a case of enlarged tonsils and I was advised surgery to remove the tonsils. As I had my reservations about getting the tonsils removed, I went to another doctor, who advised a CT scan (with contrast). The results showed a growth, which the doctor was ready to remove asap. This led to another referral to an oncologist on whose advice I underwent a biopsy. The biopsy report confirmed the malignancy. The protocol for my treatment was going to be 6-8 cycles of chemotherapy which began after a couple of days.

Chemotherapy

For the first cycle of chemo, I was admitted to the hospital. The treatment was the standard R-CHOP protocol which was initiated in the night and monitored. The blood pressure kept dropping periodically, which was expected, and the treatment was paused when it dropped beyond a point.

How does one feel when undergoing chemotherapy? The drugs leave you listless and deprived of energy. However, the same therapy is supposed to bring back one to a normal healthy life. I guess, this must be the only treatment which makes you feel unwell at first, to make you well.

The side effects after the first cycle were more pronounced compared to the other cycles. Initially, it used to hurt just to open the mouth slightly and therefore it was difficult to eat. But there was medication to take care of that and it got better in a couple of days. This also didn’t trouble much after subsequent sessions.

I lost my sleep and would barely sleep 2-3 hours for days between the sessions.

There was nausea after each session  for 1-2 days and bouts of vomiting once after each subsequent cycle but that was only on the day of the session or the following day. This affected the appetite initially for a week or so, thereafter, the appetite got better in a couple of days and the same with the energy levels. However, again, this became less pronounced after around 3 cycles. Perhaps the body becomes adapted to these.

A week after each session, a complete blood count (CBC) is taken. Thereafter if the WBC (white blood cell) count is low (neutropenia), one is injected with filgrastim (filgrastim is a man-made form of a protein that stimulates the growth of WBCs in the body) injections which boost the WBCs, which fight infection in the body. Thereafter the CBC is done again. Before the beginning of the next cycle, a CBC, RFT, LFT tests are done.

Before the second cycle, there was intense abdominal pain for which I was admitted to the hospital again. This got cured in a couple of days.

The drugs led to neutropenia  (once it was febrile neutropenia – neutropenia accompanied by fever which lasted about a week). Neutropenia it seems causes an unusual feeling in the head, like something’s going around in your head.

Around the second cycle, the nails, particularly of the thumbs, began to darken as well which I believe take a few months to get  back to normal.

After about the third cycle, the hair loss was speedier too and around the fifth cycle, it was almost completely gone.

I also developed neuropathy around the fifth cycle, which is intense pain the legs. Therefore, all effects need not take place immediately after the first cycle. However, this also stayed just for a couple of days.

Radiation Therapy

As the WBC count went low after each cycle, the chemotherapy was stopped after 6 cycles and it was decided to proceed for radiation therapy (RT). RT lasted for 25 sessions (5 days a week) which got completed a few days back. The number of sessions and the intensity of the radiation again may vary with each patient.

Initially, the RT made me feel fatigued for a couple of days. However, as the sessions progressed, the other effects like nausea, loss of appetite, lack of taste, some ulcers in the mouth, difficulty swallowing, fungal infection, throat pain, darkened and dry sensitive skin in the throat region where RT was targeted, become more pronounced. The result of all of which has been difficulty eating and the diet has comprised primarily of liquids for the last 3 weeks or so. I believe the healing takes a couple of weeks after the treatment is over.

Again, as far as RT is concerned, all this has been more than I expected. The effects have been longer lasting than those in the chemotherapy – once they begin, they last throughout the therapy and beyond for about 2 weeks or so.