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fatigue/unsteady gait/slowness after treatment for GBM

dcpederson
Posts: 2
Joined: Sep 2011

My husband was diagnosed with a GBM after a seizure in early June, 2011. He underwent surgery followed by 6 weeks of radiation and Temodar to treat the tumor. My question involves recovery from all the treatment - are you always fatigued? Does the treatment enhance the disease to increase unsteadiness and slowness or is it supposed to improve your overall well-being? It seems like he was very much like himself after the surgery and leading up to the treatment and then whammo! How long do the side effects of the chemo and radiation last?

I guess fatigue, etc could be caused by the drugs he is still taking - Keppra for seizures, dexamethasone for everything, oxycontin for pain.

Thank you for your expertise.
Barbara

Beckymarie
Posts: 358
Joined: Aug 2009

My husband had the standard course of radiation and Temador after being diagnosed with a GBM in March 2009. The radiation really did a job on him. He was so fatigued he slept sometimes 20 hrs a day. He developed steroid myopathy in his legs from the dex which he took to control the inflammation and swelling in his brain. Although he did make a great deal of recovery over time, I don't think he was ever really the same. If I could go back, knowing what the outcome would be, I think we would have forgone the radiation.

connsteele
Posts: 232
Joined: May 2011

My son (age 34, dx AA3/GBM on 4-13-11), also had a rapid decline while on radiation. After surgery and before radiation/Temodar started, he was better than before surgery. He even went to work for half days. His radiation doc said that things would get worse before they got better, and they were right. His balance got so bad that he had to use a wheelchair. Speech declined as well as his fine motor. The docs were wondering: is this rapid decline from radiation or tumor progression? As a result, they put him on high dose Decadron, which did help the symptoms, but did a number on him in other ways. Upon reviewing our son's medical records, which we obtained when he moved back home to Ohio to live with us, at one point, his doc wrote in his notes "if he continues to deteriorate, will consider calling in hospice" !

Now, we are about 3 months post radiation. He has completed his second round of the 5/28 Temodar. Also took an anti-nausea med. Never vomited but did have extreme fatigue about half way into the 5 day regimen, and several days after. He seems to perk up after that.

Although he has greatly improved since radiation, he still is not at the level he was before radiation started. Uses a walker, still has some fine motor deficits, and fatigue. And no way could he go back to work, even for half days.

I too wonder if the radiation was worth it. I guess we'll know (I hope) when he has an MRI on Oct. 12.

All the best to you in your fight.

dcpederson
Posts: 2
Joined: Sep 2011

Thank you for your comments - guess we should have looked at radiation more closely too. Not only is he slow and unsteady but also very cold all the time. Happy to hear that these side effects should diminish over time.
Barbara

meaganandshane
Posts: 10
Joined: Feb 2012

Hi, I was interested to know how your son is?

My Husband is also 34 years old and has GBM.

My husband (34 years of age) was originally diagnosed with stage 3 Anaplastic Oligod astrocytoma on April 5th 2011. He had surgery on the 8th April, they removed 7cm by 5cm from the right tempral to the occipital lobe. The neurosurgeon could not tell if she fully excised the tumor. 1 week later they diagnosed him with stage 3 brain cancer. 3 weeks after surgery my husband started 6 weeks of full brain radiation. Whilst having radiation they recommended an MRI, the MRI come back not very favourably the tumor had grown back to it's original size. They stared my husband on chemo (Temodal - 400mg 5 days on, 3 weeks off) on top of radiation. They upgraded him to stage 4 GBM as it was growing so aggressively. 6 weeks later we had another MRI, this was a bit more favourably for us as the tumor had now stopped growing. My husband is on round 9 of chemo and the tumor is still stablized with small changes. He is doing remarkably well. He gets quite tired but on the plus side of things he doesn't have as many seizures as he used to (he is taking keppra 2000mg a day).

I hope and pray that your son is doing good. Take care.

connsteele
Posts: 232
Joined: May 2011

Thanks for asking about how things are going for us.

The MRI he had on Monday was not good. Showed a "dramatic progression" of tumor growth. He has one big one and several smaller satellite tumors. His NO seemed almost incredulous as to how much the cancer had progressed over the last two months. Several possible options were thrown out then, but since our NO had just looked at the scan just one hour after it was done, the report from the radiologist was not available yet. But he was adamant that we're dealing with a very agressive cancer at this point, that no doubt is has gone to a grade 4. I asked him if this means it is now a GBM and he kind of hesitated, then said, 'yes.' He mentioned the possibility of another surgery to relieve pressure, but only if the surgeon could remove more than 50%. At best, he said it would only buy him a few months, at most. He also mentioned the possibility of Avastin. Up till now, the previous drugs our son was on (Tomdar, CCNU, Procarbazine) have done nothing to slow tumor growth. So, I think Avastin is the drug of last resort for him. He also mentioned gamma knife surgery and maybe a clinical trial. But he is not making any decisions until the Tumor Board studies his case this Thursday (2/24) and then we will see what they recommend.

The lastest results of this MRI were not really a surprise as we have seen some decline in our son's balance and fine motor, so we knew something was up.
Our son is similar in age (he turns 35 on Tuesday) to your husband and also was diagnosed about the same time.
However, there is one major difference that I think makes a comparison not appropriate: this is his second brain tumor diagnosis for David. He was diagnosed at age 8 with a pediatric type of brain tumor: medulloblastoma. He went through all the standard treatments at the time (surgery, with 100% resection, radiation, and chemo). Despite some serious long-term effects of the radiation, he beat the odds (given a 20% chance of surviving 10 years). He lived independently, had a good job in Washington DC and a girlfriend for several years.
Now, 26 years later, on April 13, 2011, he was diagnosed with a second brain tumor: AA3. His NO said David is an unusal case, not only because his tumors have not grown outside heh cerebellum, but also because it's obvious that the former radiation caused this second brain cancer. Apparently, as more and more childhood cancer patients are surviving, these long terms effects are showing up more and more. In fact, late effects and survivorship have evolved into a new area of medicine.

How is your husband functioning? Has he been able to go back to work or do the things he used to do before the surgery? This second time around with brain cancer, our son has suffered some severe deficits after finishing the radiation...has to use a walker (which is getting more problematic) and has speech problems and has applied for Social Security disability as there is no way he can go back to work.

So, Friday is the big day for us: to learn what our next course of action is (if any, as his NO did say that we can opt to do nothing and go for Hospice care). I think David wants to fight it all the way, and we will do everything we can to honor that.

Hugs, and prayers that your husband is doing well and that he too will get AT LEAST another 26 (and a many, many more)years of quality life, just as our son had.
Connie

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