GBM Treatments - what to expect ($$$)

[peanutz]

Glad to hear you had a great trip Geoff. I'm still up in the air with our trip to Europe next year. We already got tickets for the end of May which would be around 10 months after the operation. Your report lifts up my spirit but it's still daunting to take this trip. The airlines rang and left a message the other day to ask what we want to do. You didn't have a stopover to break a trip from Rome at all, did you? While you went to Europe, we did a small trip to Thailand for a week to see how Dennis coped with flying and all. He did remarkably well but a couple of days after the trip he got really sick from brain swollen 😞 He supposed to take 4mg a day but took only 2mg so he ended up having to take 16mg after he got sick and now down to 8mg. It seems to make him craves for sugar a lot and put on 4-5kgs in 2 weeks! His MRI scan didn't look real good either. The oncologist believes it's because he didn't have enough Dex during his time off from radio therapy and what we see could still be the effect from the therapy. How often does Lorraine get to do MRI scan? Our oncologist said the scan was not necessary unless he's not doing well and perhaps every three month would be max. We want to be able to do the scan every couple of months as I heard the tumour can grow incredibly fast. Hope all goes well with the scan next Sunday! Cheers!

[storm]

Hi Nat, Sue and all others on this journey In reply to Peanuzs text above - we had a change of plane stop over bothways was at Bangkok for a few hours. It would be good to spend a few days/weekthere as a break instead of coping with 22-24 hour long flights and jetlag.Jetlag appears to be worse when coming back to Australia So if you can and can afford it and like tospend time in another country, break the journey. We spent 12 days aboard a ship going from Istanbul to Venice with 6stops/cities to explore while the ship was docked. So that is a good way oftiming for the days when the chemo makes it really hard to get out of bed -that is you don’t have to participate in the onshore expeditions. Get to knowhow your partner reacts when his bad days are/likely to be - plan around thosedays Be aware that insurance will not include for pre-existingconditions so if he gets sick over thereand is related to the brain tumour then it would be at your own expense for anyhospitalisation and new plane tickets if you come back. I never thought that wewould have trouble along this line, but while on the ship one of the crew had a heart attack off Croatia Ahelicopter was dispatched to hover over the ship during a blustery night andthen let 2 -3 crew down onto ship to then evacuate the crew member. If such ahappening occurred with ourselves I could perceive an extremely expensive bill,so there are risks monetary wise. I found the insurance offered by the travel agent was expensive. I did alittle research and found that Medicare was much cheaper (by half) and had betteroptions/payments if things go wrong in other ways (we got pickpocketed inMadrid) Re his scan - the Oncologist said the same with Lorraine's scan that residualactivity maybe there from the chemo/radiation but unlikely as hers was sometimeafter the operation and radiation treatment. Lorraine's scans were originally programmed for 3 months apart. The MRIscan previous to the last one showed a significant increase and he wanted ascan before we went and he changed her medication to a 21 day on 7 days off,instead of the 5 day medication. The MRI scan 7 weeks ago showed no increase buta thickening (?) The oncologist wanted anotherMRI just after we got back (I think there is possibility of anotheroperation should the tumour have grown - option the surgeon suggested 7 weeksago) Re Dennis and sugar - Lorraine's can be quiet picky with her food nowwith chemo and can tend to not eat enough. She has always been cautious withfood (a delicate stomach) so maybe with pre-existing food habits likes/dislikesgets magnified ? Hugs Geoff

[postiesgirl]

Hi Geoff, We are now booked in on a round Australia cruise starting in March. I have just finished all the Radiation and the first round of chemo. The next lot of Chemo will start end of december. I can relate to both of Lorraines problems of constipation which we seem to have well under control now with coloxel & senna tablets every day and also the flatulence which nobody else has mentioned in other posts but I am finding can be a problem.Going for walks can be a help and gets you out of the closed in enviroment.Due for the next MRI just before Christmas so wont know whats happenning till then although the Dr says this one wont tell him much of what is going on as everything has to settle down after the radiation therepy, so the next on will tell us more. I find out more imformation from the forums than I get from any of the Drs! I hope everything goes well for you. Cheers & hugs Sue

[storm]

Hi Sue and Nat Had MRI scan then been to surgeon & oncologist. Surgeon was reasonably happy with the tumour, thought about the same size and had not spread to other parts of brain - so no need for operation (as yet). Then saw oncologist he said tumour had grown by 10-15% from 38mm to 42 mm (????????). He thought the present drug was not working He suggested going onto a trail with:- Bevacizumab (trade name Avastin - a drug that blocks angiogenesis, the growth of new blood vessels; and Carboplatin (chemotherapy drug) or just Bevacizumab Note a computer makes a randon selection of who goes on what combination. Subject to some further testing, the trail for Lorraine should start in mid January Lorraine is fed up with taking the chemo and is empathic that she has a month off taking chemo. So Xmass will be chemo free for some respite. She is a highly intelligent woman. Her tumour is located over & presses on her speech area of her brain. Then combined with the chemo, she looses on communication - and can get highly frustrating for her she can’t read and talk with people - life gets boring. Looking at talking books for an alternative Sue I note your comments:- "Going for walks can be a help and gets you out of the closed in enviroment" Not sure where you live but I am in Forster so please make an announcement if you ever pass through this area - I shall take appropriate evasive action of your walks (just in case this is sensitive for you, this is meant as a gentle pull of your leg and hopefully some release of the tedium of chemo and its life sentence that just hangs; never ever meant as offensive to you or Lorraine) the boat should be good for taking walks - if enough time you can get to the downwind most location on the boat on let fly - the noise is still a problem When you go by Forster I will know and wave a hearty hello Nat if still going to Europe consider that when coming home that it does not tie into when he comes off the chemo (or any usual low period/cycle). Lorraine had difficulty recuperating from this combination (come home Saturday night, she came off chemo on the following Tuesday so a day or so before and some days after was a "chemo" low period for her and that coincided with the jet lag)

[peanutz]

Hi Geoff, Thanks for the advice. How does Lorraine doing? Has she started on the Avastin yet? I heard it was a pretty good drug. I looked into it not long after the diagnose. However, I was advised to wait for the recurrent (if it happens) and then get Dennis on clinical trial as there is no significant benefit for newly diagnosed. It is also very expensive. We have a meeting with oncologist this evening. Hope he will give Dennis another scan soon as his right arm and three fingers (middle - little) have pins & needles the last couple of weeks and the advice (over the phone) he got is increasing the dosage of Dex (8mg to 12mg and now 16mg) which doesn't seem to help. There are so many bad side effects of Dex. He craves sugar badly but that seems to be a bit better now. He can't sleep as well, only 2.5-4 hours a night these days. Fluid retention, pimples on his body, energy level playing up. His brain and his thinking are still good though. Hope we get something good out of the meeting this evening! If I haven't had a chance to drop in here before Christmas, I wish everyone a Merry Christmas and Happy New Year! Take care, Nat

[storm]

Hi Nat and Sue Nat - How did your meeting go with the oncologist Denis travelling OK? Sue that flatulence in control (hugs- I have the male sense of stupidity in this area) The MRI scan go OK? we had the same response from the Oncologist I get the feeling that it is a monitoring the tumour for if and when it starts growing The round Australia trip should be great Lorraine should start Avastin mid January. There are a few tests she will need to do to ensure that she would be OK from the possible side effects. While the drug is free on the trail, overall it will be expensive we will have to travel to Sydney every 2 weeks find accomodation/food She has been on chemo now for 7 months wants a month break for xmass. So far 2-3 weeks off it (chemo) but still taking the Clomipramine (Anafranil) (antedopal evidence that it helps reduce brain tumours)she has very low energy hard to entice her for a gentle walk so now reduced the dosage to 125mg. Her eneregy is better. She experiences boredom - her speech is effected and she finds its difficult to talk/ find words I have a mild form of dyslexia so between us it would be a laugh if was not so serious Often gets frustrated and stops trying - its isolating even for her with me Been told of an alternate/natural therapy - Flax seed oil some research shows it maybe interesting. Heard of any other avenues through this journey? Lorraine wss not interested we tend to be scaptical of alternates though there maybe some benefits. Warm wishes for christmas and the new year to you both and all others on this site Geoff

[postiesgirl]

Hi Geoff, Hope you had a good christmas & new Year.We are off back to Perth next week for the next round of MRI and Drs appointments,so maybe know more then, I am feeling too well for there to be too much problems I think ,at least I hope so.Still sleep lots, I find what ever I do I need to allow the same amount of time for recovery after.61 days till we go cruising! Bring it on! Bst wishes to you both and hope this year is a good one for all of us on this forum. Cheers and hugs Sue

[peanutz]

Hi Geoff, Last meeting with the oncologist before Christmas was OK. Dennis seems to develop Carpal Tunnel syndrome in his right arm but his GP asked him to talk to the oncologist instead. The oncologist wants to see whether it's from the tumour or not so he ordered an MRI which we will see the scan this evening. We are quite nervous at the moment. The scan in early November wasn't good and the oncologist thought it might be the result from the radiotherapy as the scan was done only a month after the therapy. This last scan will give us some idea how he goes. Hopefully, he will decrease the Dex. Dennis puts on 10kgs in the last 8 weeks and his face starts to get a bit round from the Dex 😞 I guess it can be worse than this. Seeing you mentioned about Flax seed oil, I read from some where that Borage seed oil is better. It is probably from Ben William's book or article. Dennis is a big believer in supplements so he follows Ben's recommendation on the supplements e.g. Borage seed oil, mushroom extract (PSK), green tea extract, etc. Hope Lorraine travels along well with the Avastin. Take care, Nat

[storm]

Nat & Sue I have been a bit reclusive seem to be dropping out of socialising, but of late putting some effort in. A friend I had made through this site appears to have died - he had lung cancer I dont have his home email so there is no way of knowing he was getting very sick and has not posted. Sue getting closer to your cruise Nat I hope you are OK & Dennis's scan has improved since November. Had no news to report as Lorraine was off the chemo for 2 months then had a MRI a month ago - that report was her tumour had slightly increased something like 37x27x?? mm (I'm a bit perplexed as the previous December report stated it had increased from 37 mm to 41mm Oncoligist said that it was measured in a different axis - so I am unsure exactly what it is doing) Her veins have been difficult to extract blood from so they decided 4 weeks ago to inserted a port in her higher chest area for needle access (minor operation under a local) This has to be done at least 2 weks before Avastin(Bevacizumab)trial as it causes slow or incomplete healing of wounds etc So today she had the second dose (done every 2 weeks)first dose she was low energy for 4-5 days then some improvement overall her energy is fair she needs rest/sleep in mid afternoons speech is not good and struggles to communicate frustration ebbs and flows. We have little hope - its a slowish decline The best thing about this is she is not having the chemo drug with its side effects. This Avastin so far has less ill effects. I am not having a good day Hugs Nat & Sue Happish Valentine Day Geoff Ps yet to check out the Borage seed oil - there tends to be a few alteratives out there

[peanutz]

Hi Geoff, Sorry to hear about your friend. I'm not having a good time myself lately. Dennis seems to be tired and sleep/stay in bed most of the time. He isn't a good patient either. He developed rash on his body about 10 days ago. I asked his oncologist and he ruled out chemo caused the problem and recommended him to see his GP. Of course, being stubborn as he is, he isn't going. I'm just so angry and frustrated with him at the moment. This morning he vomited and the oncologist said I had to take him to the hospital if he vomited as it could mean brain swelling. Again, he refused to go as he hates waiting for hours at the hospital like the last time we were at the emergency for 7 hours before he was admitted and diagnosed with GBM. He's now sleeping it off. I have no idea how sleep can help. I have no idea what to do. 😞