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hkprentice's Message Board Messages

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Happy New Year everyone! I agree with all of Susannah’s comments! xo Kevin has been doing great on Avastin. Today he’s having his 3rd treatment. Between that and all the steroid side effect clearing away I would say he’s doing as well as he was right before his 2nd biopsy in Nov. Even though he had confirmed progression on scan in Dec he has not had significant clinical decline. I have noticed a slight impairment dragging his left leg/foot just a tiny bit with his gait but balance still good. Hand tremors are improved and lessened (probably w d/c steroid). Fatigue is still marked with it difficult for him to get up before 1pm, but conversely he stays up til at least 10pm...he has not returned to work since the biopsy in November. I also agree with suggestions about considering CBD oil which is being investigated clinically and there does seem to be a lot of anecdotal evidence to support it. Kevin did add this to his supplement regimen. He’s been taking .5mL daily for about 3 weeks. We also added pancur c. This is a bit of a Hail Mary but As a clinical research professional I did due diligence in the scientific rational and potential risk profile and figure it’s with the risk. He started his 2nd cycle of that this week. Also trying to get him back in the gym and improve his diet. His next scan is 4 Feb. We hope to see that his progression has slowed or stopped for the moment. Best wishes to you all for a happy new year and good results with treatments!
Where did the time go? Haven’t posted in so long but you all have been on my mind! Wondering how everyone is doing with treatments and if anything new being considered. Since last post Kevin has had progression confirmed on 2 scans. He is not working now. They repeated his biopsy and did biopsy of new focal lesion but pathology is unchanged so no clinical trial option. Started Avastin off label yesterday.
Buster - I’m really sorry and will stay positive and keep praying for you. I can’t imagine how frightening it must be and am hoping your Dr can suggest another treatment very soon! Have you asked about Optune? Is it an option for you? Keith I’m also sorry to hear that they found pre melanoma and hoping they take care of that quickly without too many side effects for your ear or hearing. Goodness we could all use a hug right now! Sending you all love! And comfort! Don’t give up and stay positive. xo
Hi everyone! I’m hoping you all are well and think of you and pray for you regularly. KB, I’m sorry to learn Mikes Tumor progressed and was positive for GBM. But it is very good to know he is doing well and they already have treatment options to present. I’m curious about the Optune prescription and how frequently he would do that? I met a lovely women in Cincinnati who has GBM and been using Optune for a long while. She feels it has worked well for her. Also curious about the THC oil+CBD oil and if you figured out how to acquire it. Buster I hope you are doing well on TMZ and not having bad side effects. Same question for you on THC/CBD. Keith I also hope you continue to manage your TMZ treatments fairly well. Do you ever have issues with white cell counts not bouncing back? Kevin is currently between treatments. He wrapped up the radiation (proton) + TMZ and was able to stay in ketosis throughout. Though he complained bitterly about the diet toward the end. He did lose weight but looks well still. His first scan afterwards showed stable disease. Throughout Kevin has continued to work but about 4 weeks post radiation the fatigue really set in and he wants to sleep a lot more. Also his white cell count continued to drop rather than bounce back after pausing TMZ so he is delayed in restarting at the double dose. Waiting on a new lab test result but Sat we plan to leave for a week cruise with extended family so not sure it’s a good time to pick back up the TMZ. At this point Kevin seems good physically with no other physical symptoms than fatigue but depression definitely has set in. His birthday was just a few weeks ago and I think he got very sad with worry. I asked he get an antidepressant so I hope that can help a lot. I think he was also very frustrated with his scan result and had hoped it could have shown some tumor shrinkage. I think he feels like since it didn’t show obvious reduction in size, he doesn’t feel like the treatment did anything. I try to encourage him that scans are hard to read and that certainly the radiation has killed off many cancer cells in the radiation field. Definitely trying to stay positive and enjoy each day but also feeling angry sad and frustrated for Kevin. All cancers are bad don’t get me wrong but brain cancer seems particularly challenging. Many thoughts and prayers to you all! Let’s all keep encouraging each other to stay positive and strong! xo
You all have been on my mind lately and in my prayers! I am praying everyone is doing as well as possible and staying positive. There are a lot of tough moments but there are many good moments too and I hope we can all cherish those and find gratitude in something each day. I appreciate hearing what you are experiencing and what your doctors suggestions are for managing new symptoms. Every case is different but it helps us prepare and take into consideration other treatment options we should consider and other lifestyle changes that may be necessary. Kevin has completed 3 weeks of diet and 2 weeks radiation + TMZ. So far so good- no significant side effect. His skin is starting to show redness in the beam contact site. Looks like a sun burn. So we predict to see some of the cumulative treatment effects emerge over the next weeks. He’s cut way way back on alcohol since starting the diet. He’s in ketosis so a tolerable amount for that but right now he just is not willing to abstain completely. This week is our daughters Spring Break from school so they plan to visit us and do some sight seeing in the area. Prayers to you all!

Friends how are you all doing and holding up?  I hope everyone is hanging in there and doing the best they can to stay positive and still seeking options for better outcomes.

I have not posted in a long while since we were on the pre-treatment roller coaster for the past two weeks (lots more Dr. visits, getting logistics in place and remote housing in OH).  

I wanted to share some interesting alternative approaches our treatment team is suggesting for Kevin in addition to Standard of Care.  His Oncologist at University of Cincinnati is a research physician with a focus on Integrative Medicine.  She's prescribed him to be on a modified atkins diet (<=20 grams net carbs per day) starting 1 week before radiation and for 11 total weeks.  This takes him up to first Scan post proton radiation + TMZ.  The hypothesis is that ketosis makes the cancer cells more amenable to death from radiation. 

In addition she recommends he take Boswellia extract supplement 2 pills 2 times daily as an anti-inflammatory other than steroids. This supplement is also being investigaged as potentially having some anti-tumor effects. 

She said we should not be scared with the first Scan post radiation, that it will look "angry" and lit up.  She said that is expected due to inflammation and scarring from the radiation.  She had a very positive attitude and said even though he's "High Risk" LGG (inoperable, >50 yrs old, IDH wild type) that we are taking an aggressive approach and there is data supporting 10 years median survival outcomes.  

I hope this information can be helpful to anyone newly diagnosed. 

Yesterday was Day 1 of Kevin's proton radiation + TMZ.  Today he still has no side effects from either.  The 2 weeks leading up we were both very anxious and he seemed very depressed.  But now that we are past the first treatment jitters we have better spirits and are trying to stay positive that this will grant him many years to come.

Wishing all the best to all of you out there and hope you are also staying positive about your situation. There is Hope.  xo

Thanks Keith and I hope you are doing great these days. Our insurance approved the proton delivered radiation so we are going for it. The effects on the tumor should be no different than it would be with photon delivered but we hope maybe less effects to his normal brain tissue this way. Last week he did his simulation and planning so I expect he will start treatment in about 2 weeks. He is still feeling well and has been exercising more. His Neuro Oncologist is the PI of a trial testing adding the modified Atkins diet to standard of care treatment of patients with late stage glioma. She is prescribing it off protocol. I am going to try and do the diet with him. The hypothesis is the state of Ketosis makes the tumor cells more sensitive to radiation. The treatments are going to be in Ohio so we will live there Monday-Friday and come home to Indiana on weekends.
Thanks for the reply friends! I hope you are all feeling well! Last Thursday Kevin had a consult at the University of Cincinnati to explore doing proton delivered radiation instead of photon. I’m curious if anyone here did that? We are waiting to see if our insurance covers it. If they deny approval the center will challenge them with appeal. I’m gathering published data that supports this modality for low grade Astrocytoma as a way to avoid ancillary radiation to the adjacent healthy brain tissue. Preservation of healthy brain and limiting adverse effects is our goal. I hope we don’t get into a complicated appeal process with Anthem since that will delay treatment starting. Kevin is still doing well and his Neuro exam was normal. No break through seizures or auras. He is antsy to return to driving. Did anyone here have seizures resulting in driving restrictions? The clinician in Indiana is saying 6 months seizure free period is recommended but in Ohio they say 3 months. It varies from state to state but our Indiana law doesn’t even define a seizure free period at all. It has been almost 2 months since his isolated seizure. I’m also looking into having Kevin do a Keto/atkins modified diet. The center in Ohio has a clinical trial that is studying this but I think in higher grade glioma like GBM so he would not qualifiy. Kind regards to you all! Heather

Hi Keith and all,

My 52 yr old husband KP has confirmed Dx this month with inoperable diffuse stage II wild type astroctyoma involving the right anterior and medial temporal lobe, inculding medulla, hippocampus and temporal operculum.  We live in Indiana.  His history was he had vauge sypmtoms for 6+ months that were being evaluated by GP as panic attack.  For a couple months they went away altogether.  When this sypmtom returned in Dec it included L arm/hand tingling so I took him to ER where he presented with a generalized seizure - CT/MRI performed showing tumor.  Right now he's well controlled on Keppra and asymptomatic-no headach, no nausua, no altered motor function.  Next week we are going to Ohio to consult about proton delivered radiation vs. traditional x-ray delivered.  If he agrees to that he will do 6+ weeks proton radiaton plus TMZ, 4 weeks off, 6-12 cycles TMZ.

Week after next he consults with Precision Genomics for additional testing.  When you all mention "Triple Negative" status, what markers are you talking about there?

My husband was off work up til this past week and is going to try and work when he's able through treatment.  He is a data scientist for a pharmaceutical company so not sure if he will struggle with critical thinking and severe fatigue during or after radiation. 

One thing I'm curious about is diet and drinking .... we are interested to know if anyone here doing keto diet and if anyone continues to drink alcohol?  My husband has been told to stop drinking altogether and this has been a real struggle for him considering he's feeling well physically and quite frankly finds having a beer relaxing with the stress of diagnosis.  My guess is this will abate once treatment starts and it will be easier to not drink.

Also curious if anyone is attending support groups or how they manage the stress with family. We have 3 daughters aged 16-24 - doing well at the moment but I image things will get more stressful over time.  I'm struggling with the stress of work/family balance. I'm a manager at same Pharma company.

Sorry for so many questions this time!  I'm just very intereseted in learning as much from everyone as possible.  

My sincere wish is for health and happiness during everyone's journey!  


Kind Regards Heather

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About hkprentice

Caregiver
Brain Cancer
Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Genetics, Side Effects, Supplements

Husband diagnosed with diffuse astrocytoma grade II wild type. Mother of 3. Clinical Research Manager. Living in the Midwest, Indiana.

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