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Starting Avastin, but are things progressing too fast?

connsteele
Posts: 232
Joined: May 2011

David had his first Avastin infusion last Thursday. Went smoothly and seems to have tolerated it well. I have heard from others that going on Avastin was like "flipping a switch" as far as reversal of deficits and well being. I know it's only been five days, but so far, things are looking worse, not better as far as his deficits. Starting on Sunday, he seemed weaker overall, but especially so on his right side, which is the side that is most affected by the tumors. He is having a harder time getting up from the chair to use his walker...even falling a couple of times. And his speech seems a little worse, and his voice seems weaker. He even said it feels like he can't talk.

I know it's too early to see an improvement from the Avastin, but I certainly didn't expect what is looking like a rapid decline...stable would be nice. We asked his NO if there is another drug we could add to the Avastin, like Ironetcan. He said that they use to add that to the Avastin but new research and their experience has shown the drug to have no real benefit over Avastin alone. But, he would add that to his Avastin regimen if we wanted but warned that it can cause severe diarherra. I relayed this to David and he said he didn't want to add that one. We see his NO on Mar 20, and will talk to him more about the pros/cons of adding another drug.

After much mental anguish, I have finally come to a decision re: getting a second opinion. I have talked to several people who have much experience in the medical realm, including my niece, who is a nurse in Columbus and has gone through this experience with a close friend and with her husband (pancreatic cancer). She said that we are going to a top rated cancer center and that Dr. C is a highly rated and respected NO. So, we have decided not to get a second opinion. At this point, we don't need to have conflicting opinions to deal with and more people in the mix. I think it would create more stress, especially if the second opinion would come back different. Then what? Get a third? ...And the uncertainty and mental stress escalates.

All this is happening at a time when things are chaotic here at home. My husband, who is my only partner in the caretaking role, had knee surgery last week and undergoing extensive rehab. And over the past four days, we've had to undergo some long drives associated with the death of my husband's mother, who was 89.

Thank goodness for our wonderful daughter, who has flown in from Wyoming to help us. She is engaged and feels strongly that she wants David to be in the ceremony. But we are wondering if she should have a small ceremony here at home...soon. More things to add to the pot! It's going to be hard on me when she has to leave later this week. I so wish she lived close by.

If David's symptoms continue to deteriorate today or tomorrow, I am calling his NO and getting him in.

This is rambling but appreciate a place where I can do this.

Connie
mother of David, age 34
dx 1985, medulloblastoma
dx April 2011, AA3, inoperable, had radiation, Temodar, CCNU, procarbazine, and now Avastin
tumors have progressed to AA4 as of Feb. 20, 2011 MRI

Beckymarie
Posts: 358
Joined: Aug 2009

As I mentioned my husband was on Avastin. I don't remember seeing major progress immediately. He was on every other week for 8 weeks and then MRI. As I mentioned you get your most dramatic results with the first round. We were told the tumor would find its way around the avastin eventually, and it did.

I really understand your decision on the 2nd opinion. We did a 2nd and a 3rd and the results came back the same. I felt very stressed during this time but was getting alot of well intentioned advice to go to certain doctors or certain cancer centers, to try this clinical trial or that one. After the 3rd opinion I said "no more". We made our decision and we moved forward with it.

Unfortunately, when it rains, it pours. It seems like everything goes wrong at once. I pray for those that are going through this truly tragic time.

Raani01
Posts: 68
Joined: Mar 2011

Connie,
I feel your pain and pray for you to be strong. I am kind of going through the same. As you know, Jacob is faced with repeated radiation as the only next option for him. We consulted yesterday with our local (his long term NO before we went to Mayo) and he agreed with Mayo NO also; if we want Jacob more than 6 months, go with radiation... Really hurting ..
About the second opinion(third for us). I understand your position. Anyway, I am going to say this. In my desperation, I called Duke last Friday and amazingly a patient coordinator called me today morning to get basic info and the Henry S. Friedman (famous tumor oncologist, you may Google him) himself called me in the afternoon. He does not sound encouraged with my description of Jacob’s situation, but asked me to have Jacob’s NO to call him next Monday as he is busy travelling this week. I am not telling this to confuse you more. However, a doctor that famous calling me was a pleasent feeling.
I am listing the phone number, if you see any benefit.
919-668-2650

Take care Connie,
Raani

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Raani,

We met Dr. Friedman (and yes he calls patients himself which is refreshing) because we liked the moto "at the Duke there is hope". We followed but a few times after my sister's surgery at Hopkins, but in the end stopped going because Duke would not offer her anything else than Temodar. (and the mention that avastin could maybe help). She was already on Temodar followed by MD anderson. There was no use to fly back every 2 months.
If there is a clinical trial at Duke, I am hoping that they would call us since she was a patient there (but I am not holding my breath). I know that Duke is hugely in favor of avastin. It also offers the EGFVIII vaccine for GBMs. And the oncolytic trial with the Polio Virus is going to be recuiting (recurrent GBM and astrocytoma).

Dear Connie,

I hope that more sessions of avastin bring some improvement in your son.

J.

Raani01
Posts: 68
Joined: Mar 2011

Julia,
Thank you for sharing your wisdom and knowledge.i am encouraged by your love and committment to your sister. In your research, did you learn anything about repeated radiation? Jacob has that as the only option (very low dose 5 days a week for 4 to 6 weeks). We are going tomorrow to meet with his NO and he expects a YES or NO from us.I believe God will help us go through the right path.
Take Care!
Raani

Tallcaregiver
Posts: 2
Joined: Mar 2012

Avastin contributed to my wife's perforated colon.
She is now taking Temodar and Ruta 6/Cal. Phos. Tumor unchanged. Does anyone know of the latest news or studies of theses homeopathics?

connsteele
Posts: 232
Joined: May 2011

I have talked with our NO and he thinks that the fatigue is probably from the Avastin but he thinks the continued decline on his right side is tumor progression. He said if it were a brain bleed from the avastin, the onset of symptoms would be have been more acute. I have to say, his right-sided decline has occurred more over the past week and corresponds to the side that the tumor is on. In fact, our daughter said she noticed a difference from the time she arrived two weeks ago until when she flew back yesterday. If this indeed is tumor progression, I can't believe how fast it is all moving...the Avastin hasn't touched it. He is due for his second Avastin a week from today. I hope we can make it that long.

I am also calling today about getting one of those portable ramps installed for the front steps. And also a transporter chair, which I understand is smaller and lighter than the standard wheelchair. We also have some friends who will come over on Saturday to set up another twin bed in our son's room.

As far as my own feelings, I am just numb. What really gets to me is when I see how this is affecting our son, emotionally. He was eating his lunch and spilled milk all down his front. He got teary eyed and said, "i can't do anything!" I just about lost it.

I think I've had enough drama for today. I'm hoping we all get a nap in.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Connie:
I want to let you know that Sarah takes the Avastin and Irinetecan together. She has infusions two times a month. The first infusion is just the Avastin and Irinetecan. The second infusion she takes 300mg of Temodar at night for five days also. This combination has held her tumor stable. I don't recall see a dramatic improvement right away either. She is stable now and she looks good, but we are worried sick after MD said it is a Glioblastoma and not Anaplastic. I am making myself crazy too, looking on the internet for that third opinion. It sounds like Duke and John Hopkins are doing some interesting stuff. I am very curious about the vaccine. MD said that because Sarah is already on the Avastin it illiminates her from most of their trials. But then the NO called and said well because Sarah is responding favorably to the Avastin, maybe she can be a candidate. I do appreciate all of the sharing on this site, it so helpful. I hope you got a nap in. I am like Cindy Sue, do I ever sleep? I never feel rested, but I feel guilty if I get grouchy about lack of sleep. How could I be grouchy when Sarah hardly ever complains? I send you God's blessings Connie and to everyone who reads this. Keep fighting. Keep your faith!

Edna

connsteele
Posts: 232
Joined: May 2011

Thanks Edna for the encouraging words. I had asked David's NO about adding the Irintecan, but he said that the research and their experience doesn't show much benefit. But he would add it to his next Avastin infusion if we want. Boy, how docs differ in their opinions. Drives us crazy! Our NO also said that it can cause severe diarherra. Has Sarah had a problem with that?

I know that you must be really stressed out about the news from MD. Have you thought of having her tissue sample sent to Johns Hopkins? After our son's surgical biopsy last April (gosh, has it been almost a year already? Can't believe it!), we were told at our first follow up with the neurosurgeon that David had a recurrent Medulloblastoma, the same tumor he had when he was eight...26 years ago. But when we showed up for our very first appointment with the radiation doctor he said that it was anaplastic astrocytoma. Apparently, he didn't agree with the surgeon's report and sent it to a Dr. Burger at Johns Hopkins, who is suppose to be this highly respected, well known neuropathologist (even the nurse who leads our BT support group here in Dayton had heard of him...said he was the best) and he's the one who said it was an AA.

So you see, they can be wrong on the diagnosis.
But I am so glad to hear how well Sarah is doing, so the current regimen she is on must be the right one.

David has really declined the past two weeks. We are thinking of calling in Hospice at this point. But first, I want to know if his current NO will still be involved with his care. Apparently, some docs cut their ties with a patient once they go with Hospice and I don't want that! I also think we need to give Avastin another chance...he's only had one infusion. The nurse said that sometimes improvement doesn't show up until after the second dose. On another list I subscribe to, a woman's husband was on it, and said that it was like flipping a switch...her husband's deficits did an about-face in just a week. She said her doctor told her that Avastin is like steroids being on steroids. David's doc has also upped his decadron dose...up to 12 mg a day. So, we are back on the fast food circuit aqain.

Again, thanks for the reply and I will keep you and Sarah in my prayers. She sounds like an amazing and wonderful young lady.
Hugs, Connie

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Connie:

She did have diareah several times, but it was very manageable with the drugs they gave us. We used Loperamide HCL and it would stop it right away. She also takes glutamine powder from a natural path doctor. I can't always get her to take the glutamine though. The glutamine is supposed to be good for her "guts" because sometimes she gets gas and it is uncomfortable. I want to reassure you that Sarah did not show improvement physically for quite some time. We are 10 months on this path now. That is interesting to me that you mentioned John Hopkins because I was just looking at their site today. John Hopkins and Duke have a lot of good things going on. This is so overwhelming and scary to try and figure out what the best thing to do for your child! Thanks for sharing your pathology story because it does help.
I am sorry that David is stuggling so much. Try and be encouraged by Cindy Sue and how her David how many many struggles and then has dramatic improvement. I will continue to pray for you and your son and all of us CSN family's. Keep you faith and keep believing that all things work together for our good. Bless you Connie and David.
Love, Edna

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