OK, here is the first posting on the Gemzar treatment. The first treatment is actually tomorrow, but I just wanted to post a brief update on where things stand. My wife had some hip pain around June, but that went away almost completely about a week before we went to the Galapagos, and returned about 1 week after we got back, and has been increasing ever since. She went to an orthopedic doctor, who ordered some physical therapy, but couldn't do much since none of our CT scans included the hip region. So, in order to have a good Gemzar baseline and examine the hip, she had an early CT scan after only about 3.5 weeks.
Just got the CT results back, and basically since the scan three weeks ago the lung tumor is stable (teensy smaller), the measured liver tumor increased about 2x in volume, there is a small but measurable lesion on one adrenal gland (was only suspicious but too small to tell in the last scan), and yes indeed, the hip socket has an ill-defined lesion. So basically the trial drug held things steady for about a year, then held the main tumor in check while starting to allow growth in the liver and the bone, and apparently the adrenal gland. So, what is a bit scary is that essentially for the first time (since just the cough) my wife has some symptoms of hip and rib pain that are due to the cancer itself and not just the side effects of the treatments.
So, onward to the first treatment of Gemzar tomorrow!
Fri, 09/08/2017 - 08:19
I'm sorry to hear of the apparent progression shown on the latest scan. It's been quite a while since your wife has had standard chemo, but she responded well to the initial Alimta and the clinical trial drug and the usual mantra is that "responders respond", so we will send positive energy to her and to you for a good, lasting response. We've seen a number of GRACE users get good response from Gemzar as a later line therapy.
We'll be expecting your next update, with good news to share!
Fri, 09/08/2017 - 21:24
Thanks Jim, for your kind words of support. I really appreciate it.
So we saw the oncologist today, and he told us that it is likely that they would do radiation (probably about 5 days) on the hip and rib at some point to relieve the pain. He also let us know that Gemzar and radiation can't be used at the same time, so we could either start the Gemzar and then take a break and radiate when needed, and then resume the Gemzar (assuming, apparently that the Gemzar won't affect the bone tumors enough to substantially relieve them) or we could do the radiation first and then start on the Gemzar in another couple of weeks.
Given the growth rate of the liver tumors, and the hope that the Gemzar might have at least some effect reducing the bone tumors, my wife opted for the first approach, and had her first Gemzar infusion today. As with her other infusions so far, not a hint of any nausea, even without Zofran. They did say to expect some mild fever tomorrow which often occurs after the first treatment.
So in 6 weeks we should have some results as to if the Gemzar is working! The oncologist also set my wife up to meet with the radiation doctor next week on the same day she has the infusion, so that they can determine the best radiation approach if/when they need it for the pain.
Which does leave me with a new question (that I suppose I should know from all my reading of entries these past couple of years...) - namely, what are the side effects that would likely occur from short term radiation blasts for localized pain treatment? Are they unique to each patient, or are there some types of generalized effects that most people get?
Anyway - thanks again for all the support!
Sat, 09/09/2017 - 06:26
I think that your wife's decision is a good one. Gemzar is a powerful radiosensitizer, increasing the effects of the radiation, which (though it sounds like a good thing) leads to increased damage to healthy tissue and therefore worsened side effects.
The side effects of radiation depend on the specific tissue being radiated. There can be some skin irritation, and if the esophagus or bowel is in the radiation field (including the path the beam takes to reach the lesion), then there can be esophagitis or diarrhea and other digestive issues, respectively. But radiation oncologists take great pains to create a radiation plan that avoid those areas as much as is feasible.
Hopefully Gemzar will be effective against the bone mets, and as long as there is no imminent danger of fractures, it makes sense to attack those liver mets first. Your wife is a courageous woman, choosing to continue to bear the pain of those bone mets in order to treat the remaining cancer.
Best to both of you with the new treatment plan.
Sat, 09/09/2017 - 22:23
Indeed she is a courageous woman, and an inspiration to me everyday.
And we are at least starting Gemzar on a good note - the nurse said that about 80-90% of the patients have a flu like fever within the first day, the first time they get Gemzar. My wife has gotten no fever or flu-like effects at all so far - whether it's because she is in that 10-20% that doesn't get it, or because all of the ibuprofin and acetaminophen she is taking for the hip pain was already in her system and prevented any fever she might have had. Either way - no side effects so far!
And the oncologist also added tramadol at night, which seems to have really helped the hip pain a lot.
Sun, 10/08/2017 - 10:48
Just a brief update. No news on the tumor yet, as the first post-Gemzar CT scan is in a couple of weeks. News on hip is good, as the pain post-Gemzar seems to have gone down quite a bit, alongside physical therapy my wife got to improve her hip muscle strength and keep the hip bones from colliding quite so strongly. Hopefully the Gemzar has been at least a little effective there!
One side effect that she never had before, though - phlebitis.
Apparently Gemzar is extremely caustic to the veins, and first one side, and now the other got inflamed after the Gemzar treatment - swollen for a few days, then painful still for a week or two after. She now has been putting warm compresses on both arms each night (and Motrin) to help. At this last treatment they suggested that if the Gemzar is confirmed to be effective then she should probably put in a port so it won't affect her veins. She has great veins on the top of her hands/arms, but apparently they need to use the deeper, straight longer veins for the Gemzar infusions, which are harder to get to, and can't be reused for a while if they get inflamed.
Her platelets have not gone down at all though (often a side effect of Gemzar), and in fact have begun to increase (not sure if that is good bad sign). I read a couple of reports that said in some people the platelets go up after the first few rounds of treatment, then start to go back to normal, so we will see. I haven't seen any consistent studies on phlebitis effects and Gemzar, so I don't know if the platelet increase is related or not.
Anyway, other than phlebitis, no substantial side effects, so now it's all up to see what's what at the CT scan.
But today we are off to a friends wedding, so we'll be dancing the night away!
Mon, 10/09/2017 - 09:46
Your report is so encouraging, not many side effects and hip pain about gone! I hope scans are good and she is on to port infusions soon. The veins in Don's arms are gone I imagine mostly from gemzar how I wish he'd gotten a port but he didn't want the reminder and the doc was ok with it so he wouldn't worry about infection. When my brother-in-law had a port my sister, a nurse was always by his side insuring extra precaution, you 2 do the same. Mike, a Grace member did very well on gemzar over 1 1/2 years.
Fingers crossed and positive vibes sent your way.
Tue, 10/10/2017 - 20:01
The CT news is good! After two cycles of Gemzar (2wks on, 1 off for each cycle) the lung tumor volume was reduced by about half (is now about the size it was after the carbo/alimta treatments), and all of the liver tumors are down by about 10-20%. It was just the normal chest CT, so we don't know what happened to the hip, but we assume it is also better since the pain got so much better. So, since the Gemzar is working it's on to the port next Wednesday and the next treatment in the cycle next Friday.
One day, one treatment at a time......
Wed, 10/11/2017 - 09:50
Great news! As I recall taking this one treatment at a time is more than enough.
Wed, 12/13/2017 - 16:49
Just had another CT scan today and it was great! All observed tumors are a bit smaller than last scan, with no lesions showing growth and no new metastases. Lung lesion, liver lesions, adrenal lesions - all just a bit smaller. Main lung tumor is now down to about 1/3 of its original volume. Oncologist said that tumors seem stable enough at this point that CT scans will be extended to every 2 months. Hopefully Gemzar will continue to work, and my wife says the side effects are pretty manageable, with many less digestive issues! And the port works great!
Wed, 12/13/2017 - 20:44
Wow, that's just fantastic news! Thanks for sharing such a great update, and keep the good news coming!
Thu, 12/14/2017 - 09:21
Stay ahead of stomach upset.
Your news has made my day!
(((Hugs))) all around,
Thu, 12/14/2017 - 15:05
Thanks Jim and Janine. My wife and I are flying out to LA to see my daughter/son-in-law next week, so if I don't get a chance to post beforehand, may all your holidays be full of light and warmth and love, and may the New Year bring you joy and health and happiness filled with family and friends.
Mon, 02/26/2018 - 16:03
Another good CT scan! Latest CT scan shows stable central lung tumor and stable/slightly decreasing liver tumors. Adrenal and bone lesions stable, and no new metastases. The port works great and the side effects are still well under control.
So - for the moment we breathe a sigh- two months at a time.......
On a side note, my wife is applying for medical cannibis in case she ever needs it for the pain (like the hip a few months ago). The two of us went in today for fingerprinting (patient and caretaker) and the man there saw the form was printed with "TI" and said "OK, which of you is terminal?" [A little unsettling to the say the least]. My wife said "Well, that would be me - I do have Stage 4 Metastatic Lung Cancer". He went on to explain that terminal patients don't need to be fingerprinted, and the forms are expedited when they are sent in. We left the office and my wife said "Well, I guess there are some benefits to this cancer thing." We both laughed.
Tue, 02/27/2018 - 06:53
Congratulations on the great scan results! We always like these positive updates.
I'm sorry for the insensitivity of the clerk, but your wife's response just underlines the terrific positive attitude both of you have shown. I hope that your wife doesn't need the cannabis, but that it helps if it does become necessary.
We look forward to your next good-news update!
Mon, 04/30/2018 - 16:25
And one more good CT under the belt! All tumors still stable, sites of previous bone lesions all seem unchanged, no new metastases. A few new tiny spots in a different lung lobe, but oncologist says it looks like just a bit of inflammation. Looks like the main lung tumor is holding steady at about 30% of its size (volume) that it was at diagnosis. So, with Gemzar about 7 months down and holding!
As always - thanks to everyone for their continued support!
Wed, 08/01/2018 - 13:07
Well, apparently mixed results from the latest CT scan. We don't have the detailed report yet (should be available later today) but the oncologist said that apparently while bone and main lung lesion are still well-controlled by Gemzar, at least one of the liver lesions has made a huge increase in size since the last CT scan.
So, the oncologist will be talking to the trial doctor at U of C (who we worked with at the last trial) to see if it is time to try the clinical trial for the new HER2 TKI that my wife was already pre-approved for last year (Ariad drug AP32788, now listed as Takeda TAK-788). This is an oral TKI like many others, so if my wife goes on the trial it will likely mean she will not need to go in for the infusions like the other clinical trial drug. Early results of the Phase I were reported at 2018 ASCO, and showed about a 64% response rate (Positive or Stable) at sub-optimal doses (less than what is being tested as recommended Phase 2 dosage), but of course that was for a very small number of patients, and they didn't report the breakdown of EGFR Exon 20 vs. HER2 Exon 20 patients.
Anyway - we are in standby mode for the moment until we get more details, but the initial sense is that there will need to be some change in treatment.
Wed, 08/01/2018 - 13:28
One more small update on TAK-788. I found the waterfall graph from the ASCO meeting of the Phase I results presentation and it included some of the results from the higher dosages. Basically it looks really good for the results from the higher dosages, especially for EGFR Exon 20 patients. HER2 patients are less clear since there were only 5 patients on the graph, and none at the optimal Phase II dosage (but still a 50% response rate for those at the slightly lower dosage).
Thu, 08/02/2018 - 07:17
I'm sorry to hear about the liver progression, but it's good to see that you have a viable follow-up treatment, especially one that has shown such promising early results. Whether 64% or 50%, those are impressive numbers.
I hope that the trial approval process moves quickly, and that your wife gets great results from the new therapy.
Thu, 08/02/2018 - 08:57
Thanks so much Jim! I always appreciate your kind remarks.
By the way, in looking up stuff on TAK-788 today, I came across this group that is trying to get developed, coordinating patients and doctors working on Exon 20 cancers. If you hadn't seen it yet, I thought it might be of interest to you to let other Exon 20 people (both EGFR and HER2) know.
And I saw that Dr. West is one of the oncologists on board with this!
Thanks again for all you do for GRACE!
Thu, 08/02/2018 - 10:09
Thank you for posting about exon20group.org. That's an exciting development for lung cancer research and a what looks like a great model for research especially in rare mutations like your wife has.
I hope your wife gets to benefit from the research advances that come out of this effort!
Fri, 08/03/2018 - 11:27
Well, my wife met with our oncologist today (who talked with the clinical trial doctor), and it appears that they do indeed want my wife to go to the clinical trial drug (TAK-788, oh boy we get to conceive of our own new drug name again....we called the last one POSSIBLA). The good(?) news is that because we were on vacation and she had skipped 1 Gemzar treatment (and won't be having any today) my wife is already 21 days into the 28 day "wash out" period before she can have the new drug.
We got the CT scan, and it indeed shows the mixed results over the last couple of months - no change at all in the main lung lesion, and a doubling of volume of one of the main liver lesions. After the two oncologists conferred, they decided it is a good time for my wife to go on the clinical trial drug. I can only imagine how hard it is for oncologists to decide treatments in these types of situations. Knowing when to switch treatments is definitely part of the "Art" of oncology.
The good news is that this is a targeted treatment, and therefore a class of treatment my wife hasn't had before. (Other successful treatments were targeting general metabolic activity or markers for adenocarcinomas). The scary part is that while there are more treatments available (e.g.metabolic-based taxol-type treatments) this represents the last of the main class of untried treatments. The preliminary TAK-788 data from Phase I presented at ASCO certainly looks as good as afataniob/osimertinib, but it always seems scary when on the verge of a new line of treatment.
Looks like this will be my last post in the "Gemzar" series, and the next post will likely be in a brand new TAK-788 thread.
And for those of you who want to get a head start, here is a brief article on the drug.
As always, thanks so much to all of you for your support.
Fri, 08/03/2018 - 14:26
I'm so sorry about your wife's progression, I can imagine how scary this is. It's great to know there is such good promise in the next treatment. It continues to look like she could just ride this wave of new treatment options all the way. As always y'all are in my thoughts and hopes.
Sat, 08/04/2018 - 10:01
Good luck on the new trial. Here's more info on the preliminary results: https://twitter.com/tony_calles/status/1003295663159959553?lang=en (You can click on the image and zoom in a bit to read it; not the best quality but passable).
Sun, 08/05/2018 - 22:21
Thanks so much Jim and Janine. I really appreciate your thoughts and support and info!
I will let you know how it goes - we have an appointment with the clinical trial doctor at U of C on Wednesday to do check up and look at latest CT. Assuming all goes well (since she has essentially been pre-checked by the Denver group) she will start on TAK-788 the following week (with a lovely 8 hour session - I think they both look to see if there are any immediate side effects of concern, as well as test the rate/dose at which the drug enters into the blood stream). Do you think I put enough parentheses in my comments? :)
One step, one trial, one day at a time. One more reminder to enjoy each moment!
Mon, 08/06/2018 - 09:38
We see no style errors. (After all isn't science all about never having to say your sorry about ones lack of grammatical style). :) (Exceptions here of course for all the beautifully written info)