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Thread: Help deciphering treatment plan

  1. #1
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    Help deciphering treatment plan

    Hello all,

    Firstly, thank you for providing this forum. Although I do not post much, I appreciate knowing this group is here for support and resources. My mother-in-law was diagnosed with GBM November 2016. She did the 6 weeks of concurrent radiation and oral chemo (Temodar). She then did monthly Temodar through October 2017. She had an MRI last week which resulted in progression of disease. I was not present at the appointment nor have her MRI results been posted to her online medical record so I am going off of information my husband's brother has shared. It sounds as though there are new lesions surrounding the original tumor site. Her oncologist (she does not have a neuro-oncologist as she has been unwilling to seek treatment outside of Kaiser) wants to begin her on some type of medication that will stop the lesions from growing and block blood from getting to them. Does anyone know what this medication is? Then the oncologist wants her to have a PET scan and then begin chemo which I'm assuming means Avastin. Does this sound like the right plan? Any insights/recommendations are greatly appreciated.

    Additionally, she has been living alone in an apartment this entire time as she has been unwilling to allow in-home care or consider an assisted living option or living with one of her children. Today she acknowledged that she needs in-home care or assisted living. Does anyone have resources for beginning that search? She will live with her one son (my brother in-law) and his wife until we find a safe solution, but she is adamant that she not "impose" upon either of her children.

    Thank you for any insights/recommendations - they are greatly appreciated.

  2. #2
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    Sorry to hear of your mother-in-law's apparent recurrence. You are right; it's most likely that what was prescribed for her was Avastin; that's the second-string treatment for GBM in the US. Avastin is given as an infusion once every two weeks, or sometimes once every three weeks.

    However, the term "lesion" is confusing me a little. Do they believe these are new tumors, or not? This is the trouble with not having a neuro-oncologist on the job... I know you're relying on your brother-in-law's report of what was said, here, but sometimes at recurrence there'll be some uncertainty over whether what's been seen on the MRI is tumor growth or pseudoprogression; sometimes the cancer center's brain tumor board will meet to review the scans and decide.

    So I'm just wondering how sure they are that they're seeing tumors.

    Anyway, that aside, your county public health department may keep a list of available home health aides and LPNs. Besides that, if the oncologist orders it, a county public health nurse can also visit your mother-in-law at home; we had a county RN coming in three times a week at one point.

    There are also various companies that provide various kinds of in-home care; if you google "home health care" then companies near you will come up. Insurance can sometimes pay for this depending on what is deemed medically necessary.
    Last edited by GBMsibling; 12-06-2017 at 04:03 AM.

  3. #3
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    I agree with GBMS here - she needs to see a neuro-oncologist. If the reason she doesn't want to go outside Kaiser is cost/insurance - the NIH IN Maryland will do free consults - https://ccr.cancer.gov/Neuro-Oncology-Branch

    While Avastin is an excellent biologic, but is often given later on in a patient's journey - it seems her doctor is missing a few steps. I would have thought he would do a repeat MRI in 6-8 weeks to see if it is growing (and how fast) - then get a surgical consult and discuss treatment options - including going back on Temodar (is she MGMT methylated do you know?), CCNU or something, trying an immune drug, like a PD1 / PDL1. They could even start her on the Optune cap right away.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  4. #4
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    Hi GBMS and NikosF, thank you very much for your insight and suggestions. I do not believe cost is the factor in her not wanting to consult a neuro-oncologist. She is very home-aligned and does not want to go outside of her own city for any treatment. I have made the suggestion that we see about getting a consult from UCSF as we live about 90 minutes from San Francisco. I will try again. I was also wondering why no suggestion of a surgical consult. I am trying to walk the fine line of advocate without stepping on toes.

    To answer your question: I know she is the bad result of MGMT methylated with a believe means her biopsy came back negative for that. The way her doctor phrased it was that there were good and bad results for that and hers was bad. What is CCNU and PD1/PDL1?

    Regarding GBMS' feedback, will a PET scan help determine if the lesions are in fact tumor growth or new tumors? The way her son showed it to me using a drawing was that there was growth immediately surrounding the original tumor site, but then he also used the term lesions which confuses me as well. I take lesions to mean new growths in different areas.

    My husband is calling her VA representative today as we heard from a cousin that the VA will help locate assisted living facilities or in-home care.

    Thank you for all your input.

  5. #5
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    The only way I've heard "lesions" used in the context of GBM is when talking about CT scans. A CT scan isn't precise enough to show that tumors are definitely tumors, so what it shows are called "lesions".

    It's kind of like calling a cut on your hand an "injury". It's an imprecise term. The doctor probably used that term, though I couldn't say why.

    It used to be-- as recently as when my sister died four years ago-- that the only way to tell tumor from pseudoprogression was a biopsy. It's my understanding that this can sometimes be done by scan now but I don't know the details. NikosF knows a lot more about scans than I do.

    But that kind of state-of-the-art technology and knowledge for GBM treatment is more likely to be found in a neuro-oncology department than a regular oncology department, needless to say.

    Only 90 minutes away? I hope you can get her to go there. They're supposed to be very good; we have at least one forum member who travels a long way to go to UCSF. That said, I don't want to be putting it on you to get this point across. One can only do what one can do, and then other people are going to do what they're going to do. Sigh.

  6. #6
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    UCSF is definitely one of the best in the country. This might be time for the 'do you want to die or not' harsh talking to.

    A PET scan *could* distinguish between pseudoprogression and recurrence. In a nutshell it shows areas of high metabolic activity (such as tumors) - it works really well in areas such as the chest - but the problem in the brain is that the brain itself uses a ton of energy itself so everything shows up as a hotspot - it's like trying to see a flashlight in a forest fire (sorry if that's in bad taste for the folks in California).

    A better scan would an MRI spectroscopy - which identifies specific metabolites from a tumor - which are not present in pseudoprogression. The PET doesn't hurt, but I would ask for the MRI spec as well and another MRI in 6 weeks before drawing any conclusions.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  7. #7
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    Thank you GBM Sibling and NikosF for the helpful information and input. She moved forward with the PET scan one week ago and on Tuesday was told by her oncologist that the tumor is re-growing. Her health is declining very rapidly at this point and cognitive function is very low. Physically she cannot do simple things like dress by herself and cognitively she is very confused (not sure what day it is, where she lives, things like that). Her medical oncologist ordered a round of Avastin which she will be receiving this afternoon. In the meantime we have located a very nice assisted living facility just a few miles from my brother-in-law's house. My husband, brother-in-law and I will be working with movers tomorrow to get her moved into her new home. At this point as there is no big push to seek a second opinion (and she is not my mother so my decision-making power is limited) we are going to do anything we can to make her quality of life the best we can. My step-daughter (her granddaughter) is flying in from Alaska for Christmas so I'm very glad the two will get to spend time together.

    I do have one query I'm wondering if anyone can shed light on: how hard on the body is Avastin? I'm not sure how much she can take at this point and her experience with Temodar was very negative - it made her incredibly ill. She is also about 10 pounds underweight and although we make sure she gets plenty of hearty meals (and her appetite is good), she is not gaining the weight her oncologist told her she needs to.

    Thank you in advance for helping shed light on this situation. I wish I was able to make a larger contribution to her care, but I'm glad to have valuable, trusted information to share.

  8. #8
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    Quote Originally Posted by marnold65 View Post

    I do have one query I'm wondering if anyone can shed light on: how hard on the body is Avastin? I'm not sure how much she can take at this point and her experience with Temodar was very negative - it made her incredibly ill. She is also about 10 pounds underweight and although we make sure she gets plenty of hearty meals (and her appetite is good), she is not gaining the weight her oncologist told her she needs to.
    It varies considerably with the individual. Supposedly, Avastin is a harsher drug than Temodar. However, what we've seen here on the forum is a lot of people react better to Avastin than to Temodar.

    Many people seem to be knocked flat with fatigue for 24 hours after an Avastin infusion, so don't worry if that happens; it seems to be a fairly normal reaction.

    The big issue with Avastin is bleeding. There is a possibility of a brain bleed or of digestive bleeding. Both of these are rare. I've been reading this forum for seven years now and I think it's happened here maybe once.

    Another possibility is that it can increase seizure activity. We noticed this on the forum before it became an officially recognized side effect for Avastin; now it is.

    My sister was on Avastin off and on for about 18 months and the only side effects she ever experienced were a nosebleed once, and the fatigue. But she also had her first grand mal seizure after starting Avastin and it may or may not have been related.

    All that being said, Avastin does not tend to cause the nausea issues that Temodar sometimes causes, so continued weight loss shouldn't be a problem, or anyway shouldn't be exacerbated by Avastin.

    It also has a side effect of reducing edema (swelling) so that may improve her cognitive functioning. Again, it varies with the individual.

 

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