Onward, Ever Onward to Gemzar

Portal Forums Lung/Thoracic Cancer Lung Cancer Member Updates Onward, Ever Onward to Gemzar

This topic contains 8 replies, has 3 voices, and was last updated by catdander forum moderator catdander forum moderator 1 month, 1 week ago.

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September 7, 2017 at 8:47 pm  #1291437    

scohn

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!


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

  • This topic was modified 2 months, 1 week ago by  scohn.
  • This topic was modified 2 months, 1 week ago by  scohn.
September 8, 2017 at 8:19 am  #1291439    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

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!

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 8, 2017 at 9:24 pm  #1291447    

scohn

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!


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

September 9, 2017 at 6:26 am  #1291451    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

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.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 9, 2017 at 10:23 pm  #1291510    

scohn

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.


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

October 8, 2017 at 10:48 am  #1293259    

scohn

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!


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

October 9, 2017 at 9:46 am  #1293271    
catdander forum moderator
catdander forum moderator

Scohn,

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.
Best,
Janine

October 10, 2017 at 8:01 pm  #1293295    

scohn

Thanks Janine!

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……


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar-large tumor reduction.

October 11, 2017 at 9:50 am  #1293303    
catdander forum moderator
catdander forum moderator

Great news! As I recall taking this one treatment at a time is more than enough.

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