First Avastin Treatment Goes Well

Ed received his first treatment of Avastin last Wednesday. The nurse told me he was to arrive at 9:20 a.m., and by 9:40 a.m., he would be hooked up to his I.V. and begin his Avastin/chemo drug infusion. My brother (B2) elected to take Ed to his first treatment, as he is currently on a (very) flexible work schedule (as in laid off and working whenever he can).

Therefore; I do not know what happened except for the bits of info I have gotten third hand, from my Mom, and bits I have gotten from Ed himself. Remember, Ed's tumor has affected his speech and it is very difficult for him to express himself and difficult to understand what he does manage to get out. For whatever reasons, Ed's I.V. didn't get started until about ten minutes till eleven that morning. He and my brother didn't leave the cancer center until about 4:30 pm. So I take it the chemo treatment takes approximately five hours to complete.

Somewhere in between, B2 went to get them lunch which they ate at the center, and my brother had a run-in with a nurse who apparently wasn't looking where she was going and nearly plowed through my dad and brother while they were making a trip to the restroom. A trip to the restroom involves pushing my dad in a wheelchair and pulling the I.V. tower along behind.

My brother has many gifts, skills, and attractive attributes. Patience is not one of them. According to rumor he had words with the nurse. I am glad I was not present.

I think for the most part, everyone at the cancer center is very focused on the patient and tries hard to be kind, caring, informative and helpful. Dr. Splichal is especially kind and knowledgeable. The nurses seem to truly care and take pains to be gentle and soft spoken. Even the front desk clerk and the check-out clerks are usually very pleasant and sweet. I have run into one nurse (aid???) that I didn't find to be very friendly or approachable, but I've not seen him at the office but once. I think it takes a very special person to work with people who are very sick and/or dieing. I think these persons have to have something inside them that allows them to be knowledgeable, but also sympathetic and supportive. They have to have a little bit of angel inside them to be able to have patience with the cancer patient and their families. I thank God for these doctors, nurses, aids, clerks, and anyone my dad or us come in contact with.

So far, Ed has not had any side effects from his treatment. He receives medications along with his chemo and Avastin to combat nausea and vomiting. His normal side effects of having cancer, a brain tumor, and all his medications have not gotten worse or better. He was informed that 10 - 12 after his treatment he could begin having diarrhea. Ed and my mom have an arsenal of foods and medications on hand to combat it if it happens. Today was the 7th day after his treatment. No diarrhea yet.

Ed also had a follow up visit with his neurologist this week. The neurosurgeon suggested he have a follow-up with the neurologist to see if his seizure medications could be tweaked, as he is still having seizures...usually about two weeks apart, and usually having at least two about an hour or so apart. On a scale of 1 - 10 , 1 being a very weak seizure and 10 being a full-on, grand Mal seizure, I'd say his are somewhere in the middle...maybe a 5 or 6. The neurosurgeon kept his medications the same, but upped the dosage of one and changed the schedule a bit on when to take them. Hopefully, this will eliminate or reduce the number and severity of his seizures.

Ed will go for his second chemo/Avastin IV infusion next Wednesday, June 17, I think. My sister-in-law (B1's wife) will take him on that visit. Hopefully, that visit will go a little smoother. I'll let you know. Ed continues to have his good sense of humor. This past weekend he showed me the thick growth of hair on his legs, arms, hands and fingers, caused by the steroids he takes. He told me he has a job. "What???" I asked. He said yes, he would be on T.V., in a commercial. I am still looking at him with my eyes narrowed. Yes, he said, I am doing a Geico commercial. No caveman suit needed.

Looking up!

Ed had a couple of bad weeks in March, but the week following his birthday, things started looking up!

First of all, the first round of chemo began flushing from his body, I suppose. He began using his right arm again, even exercising it with the one pound weights I gave him on his birthday. He also began exercising his legs; Mama lifts and bends them and moves them all about, and he started sitting on the edge of the bed and practicing pulling up with his walker, standing for a few seconds and sitting back down.

His appetite came back, full force! He has been eating four biscuits at one sitting a lot of mornings. They are usually stuffed with sausage and/or egg, and sometimes bacon. Some mornings he just wants toast. He drinks about four Ensure shakes per day, alternating between vanilla, chocolate and strawberry flavors. He also drinks several glasses of water, tea, milk or Gatorade per day.

The fungus (or Thrush as some folks are calling it!) has pretty much cleared up due to taking an anti fungal medication and using 'Magic Mouthwash'. (If you have never heard of Magic Mouthwash...it is a concoction of about 7 different medications including antibiotics, numbing agents, benedryl, an anti fungal agent, Maalox, anti inflammatory med and coating agents).

At his last check up with the oncologist, Dr Splichal, on Friday, April 3, Ed got a better report than his previous visit. He had gained 1.6 lbs back, was able to help himself in and out of the car and into the wheelchair, and no longer had signs of dehydration. His red and white blood counts were perfect, as were his platelets.

Dr. Splichal did indeed have a better attitude this visit, and a more hopeful outlook. He stated that he had been doing research on GBM (glioblastoma multiforme)...watching educational DVDs and learning things he had not known about the disease before. He said he had consulted a doctor that had a lot of experience with GBM (maybe he said the guy who had made the training tapes????) and one important thing he learned from him is that the MRI he took two weeks right after Ed completed radiation and chemo probably gave him a false reading.

I remember Dr. Splichal telling Ed (and us) at that time that even though he had just finished radiation and chemo (Part 1), that the tumor had survived and had grown to about 1.5 inches (this after the neurosurgeon had cut out the tumor in November...even though 'fingers' were left inside the brain). At that time, I couldn't believe it. But I'm not a doctor.

Now Dr. Splichal has learned, and shared with us, that an MRI taken that soon after radiation and chemo therapy, will show a very large amount of DEAD tissue!!!!!!! The advising doctor told him that it is very possible that the tumor has not grown to that extend at all, but that he had been viewing dead tissue! He advised Dr. Splichal to take another MRI a few weeks after Round 2 of Chemo Part II, which will begin Monday, April 13. He feels like Dr. Splichal will get a better and more informed picture at that time. So we are looking at an MRI sometime during the first week or so of May. Originally, the plan was to get an MRI after Round 3 of Chemo Part II, so this is a little sooner.

Ed's speech comes and goes. Some days, he speaks more clearly and forms really good thoughts and seems clear headed and unaffected by the tumor as far as being able to think clearly and make decisions and conversation. Other days it seems the right side of his mouth won't cooperate, it hangs slack and/or just won't move with the left side of his mouth, and it seems these days he thinks a little slower and has a tendency to repeat back some of what is said to him.

He is more able to feed himself again, especially things that can be picked up without a fork or spoon, and he is able to hold his sipper cup. (Walmart sells a plastic sipper glass, that has a built in sipper-straw that runs along one side up the length of the glass, with a large opening at top which accommodates ice and an easy on and off top - for $1.00! and it doesn't look like a kids only cup).

He loves to watch Westerns, and you might find him watching one any day of the week. He is spending more time up and about and taking less naps.

B2 and helpers built two ramps to accomadate Ed's chair. One takes him from the house and down one (half) step down to the front porch. Now, Mama can take him out onto the porch to get fresh air, sunshine, and a change of scenary. The second ramp goes from the front door to the ground so that Ed can go outside and easily be taken to the car.

He went for exactly two weeks seizure free, and the one he did have was very mild and mostly confined to tingling and burning in the right leg. This is a true blessing!

One morning, my mom went outside to feed the cats and dog and when she came back inside Ed was sitting in his chair, not in the bed where she had left him. She asked him how did he get into that chair, and he said 'I did it'! That was amazing considering the week before he could barely lift his right arm.

Medication changes in the past two weeks include reducing his heparin shot to 80mg (from 125mg) which means he only gets one injection per morning now, he was put on Coumadin to further assist with the blood clots, and his steroid dosage was brought down another 4mg! He is taking only 2 steroid tabs a day now, from 4 in the beginning! That is good news because steroids are good for reducing swelling and helping in other areas, but it causes muscle weakness! He was also taken off Zantac and put on Prilosec OTC, one caplet a day.

Also, as a side note, Ed voluntarily stopped taking some meds (at my urging and advise), ones I didn't think he needed to be taking. One, the tabs he was taking for hiccups. I told him if he'd stop taking it, he could always start taking it again if the hiccups started back up. I was really glad he stopped it because I read that it is a mind altering drug that mental patients are sometimes given. The other one was an anti-nausea pill taken that was not taken in conjunction with nausea. Again, I told him if he started having nausea again, he could always start it again. These drugs were 'as needed' drugs and right after surgery he did need them on a daily basis. But since he has stopped them, he doesn't need them!

One drug he has stopped using is his Advair for his emphysema. I totally disagree with him not taking it, but it's a battle I am willing to lose as long as his breathing seems okay. I am wondering if he's stopped taking it because of cost. I am going to look into seeing if it is offered under a patient assistance program at low or no cost, to see if that would encourage him to start using it again.

One last note, B2's girlfriend found out about a news release concerning an existing drug used for other types of cancers, but is now being approved for use with GBM patients! It is not a cure, but another avenue to try in improving the life of brain tumor patients...increasing time and quality of life for the patient! (called Avastin)

Praise God! He is answering our prayers in that Ed's life seems to have calmed down some, everyone seems to be handling all of this better, God is being gentle in that the chemo doesn't make him sick, he's been regaining some strength and appetite, he continues to have such a positive outlook and peaceful manner about him, his doctors are researching his disease in order to help him more, drug companies have accepted him for their special programs in getting low or no cost medications, and new medications are on the horizon for his possible use in the future! God is good - all the time!