August 23, 2011 at 3:55 pm #50644
My main oncologist (Dr. Kemeny at Sloane Kettering) seems to think the lesion is not important. She has scheduled another CT scan for Sept. 19. After thinking about it, I feel that this is probably caused by the chemo attacking a weak area of the liver. Since the chemo did such a good job in shrinking the tumor, I can’t imagine another tumor growing at this time. Dr. Kemeny says if it is still there on the 19th of Sept. we will look further to figure out what the problem is. I trust her judgement, since she is one of the best oncologists in the area when it comes to cholangioicarcinoma and other GI cancers. So I am trying not to worry about the lesion and just keep envisioning the tumor shrinking.
I have the embolization scheduled for this Thursday and am SURE it will work this time! Then a pump study and then we will start me on the FUDR thru the pump. That will help with all the side effects since I will hopefully be getting a lesser dose of the oxaliplatin during this phase of treatment.
KrisJuly 29, 2011 at 9:47 pm #50642pcl1029Member
I am a patient also. May I suggest you call the oncologist to clarify the 1.8cmx1.1cm lesion again to see whether it is cancer or not.
I did do a research on your posts and you had mentioned that you have 2 oncologists;Dr, Lee and Dr. Kemeny in 2 different locations.May be you can consult them both.
If they are not sure,and if your insurance policy allowed,get a PET scan done then will know for sure.
This suggestion was also mentioned in one of the member called email@example.com on 6/19/2011 under discussion forum when she answered your questions. She wished she had done a PET scan when she discovered nodules in her lungs while she was still on the liver FUDR pump.
As Marion said,the lesion may or may not be anything; but I think PET scan will be a good idea if the 2 oncologists have different conclusions about that lesion and especially you had mentioned on 6/19/2011 about ” cancer had spread to the surrounding lymph nodes.”
God bless.July 29, 2011 at 8:59 am #50641marionsModerator
Kris…I believe the indeterminate lesion could be either, benign or malignant and to me it means that the glass if half full. You are doing so well and I am thrilled to hear that either, embolization or surgery may be an option for you. Congratulations.
The peripheral neuropathy has been discussed often on this site and it can be rather bothersome. Wearing gloves when touching warm or cold things may be of help to you. Additionally someone had spoken of Lidocaine patches in order to relieve the pain. You might want to discuss this with the physician. But there are also other drugs available for symptom relieve. Kris, I am wishing for continued shrinkage of the tumors in order for you to finally receive the long awaited pump.
All my best wishes,
MarionJuly 29, 2011 at 1:24 am #50640nancy246Member
Hi Kris, Sorry to hear the neuropathy is getting worse but so glad to hear the tumor has shrank!! My husband was on gem/cis and experienced worsening neuropathy throughout chemo. He had 8 cycles which he completed on May 18th. The neuropathy has improved steadily since then. How many cycles are they doing for you? Is the lesion in the liver? Hopefully your doctor can give you answers about that. My guess if they said “indeterminate lesion” they are not thinking it’ cancerous. Chemo is definitely hard on the body, my husband and I like to blame lots of things on the chemo -lol. Take care and keep kicking butt! NancyJuly 28, 2011 at 3:21 pm #50639
4 GemOx treatments and the neuropathy is getting worse. My onc is getting concerned. But on a GREAT note, my tumor has strunk from 5.4cm x 4.3cm to 4.4cm x 3.3cm!!! We are discussing my options for surgery or another embolization to try to get my body to cooperate so we can use the liver infusion pump.
I read the CT scan report after meeting with her and have a call in to find out what the “indeterminate lesion of 1.8cm x 1.1cm” on the report could be. Is this a result of the chemo? Do you get lesions from the chemo killing good cells?July 11, 2011 at 1:09 am #50638jim-wildeMember
Kris, I had Gemzar (only) for six months on a two on/one off cycle. We started with a 3 on/1off cycle, but blood chemistry got really hammered and had to back off to 2 on/1 off. Platelets and white cells were depressed most of the way. Mostly wasn’t too bad, but the anticipation started to build, and in one of the last few infusions I tossed my cookies very suddenly. I had minimal hair loss, which reversed once the chemo stopped. You’re on a tougher regimen, so I would expect more side effects. I hope the side effects get no worse.
Good luck.July 11, 2011 at 12:19 am #50637
Well, the third chemo treatment brought a new side effect. Not only was I nauseous and actually vomited for the first time from chemo, but the anti-nausea pills didn’t control it (It wasn’t too bad, but still: it makes me realize things are going to progress). The new side effect was a little more disarming. I am left handed. Shortly after chemo, I had spasming in my hands and calves. My calves re still spasming, and it’s been since Wed. But that isn’t what concerns me. My left hand went “dead” intermittently. It would fold in on itself and I couldn’t do anything with it except open it with my right hand. But I couldn’t feel it. It would last for a few minutes then be okay for a while. This happened 3-4 times on Thurs. and twice on Friday. The Dr. seems to think it might be related to the chemo. After all, neuropathy is a side effect of the Oxilaplatin. Although this isn’t exactly neuropathy from how I understand it, I guess it’s related. But it’s kind of scary since this is only 3 treatments. If it gets much worse, I’m afraid I won’t be able to drive.
My only hope is that the CT scan on the 27th shows some progress so we can do surgery to repair my veins or remove the tumor (which would be a reach) but I sure hope we cn get my body to cooperate so I can get the pump working so I can stop with the GemOx treatment.July 3, 2011 at 5:26 pm #50636lainyMember
Kris, I can only say that you are AWESOME!July 3, 2011 at 5:14 pm #50635
I count my blessings every day also. I am so lucky that my side effects so far have been minimal. I would say that 3 days of exhaustion and 1 week of not being able to eat, touch or drink anything cold is not a bad tradeoff to fighting cancer and hopefully winning.
I have a CT Scan on the 27th to see how the treatments are doing. It will be after 4 treatments, so not expecting a huge improvement, but hopefully there’s no spread of the tumor cells.
I still have some energy 10 days out of 14. Not enough to do my gardening (said gardens are starting to look like forests! UGH!) but I do still go out 2 nights a week and visit with all my dancing friends. I stay for about an hour before I’m too tired and figure I better not push it too much or I’ll be back in the hospital with something stupid. So I still have my fun, but it is very limited. I’ve decided that cancer has taken enough from me, and I’m not giving anything else up without a fight.
I figure there will come a day (hoping not, but being realistic) that I won’t have the energy to go out and try to have fun, but I’m holding onto part of my routines as long as I can.
KrisJune 15, 2011 at 4:30 pm #50633slittle1127Member
So glad that you are feeling better. I have started to deliberately acknowledge and count my blessings on a daily basis. This is a blessing to hear. Thank you for sharing about feeling stronger and better. Blessings, SusanJune 15, 2011 at 10:07 am #50634mariaMember
The information I got before starting Gemox was that it rarely causes hairloss!!
The neuropathy I got was never painful, luckily, just annoying. Now I have to really put pressure to my fingertips to feel it at all!
Before starting with Astragalus I had to stop Xeloda+Gemzar after one week due to neutrofils at 0,7-0,8. This time, for example, neutr was 3,8!!!! after one week and today I found out that mondays bloodcount after two weeks showed neutr 1,5! Not a little improvement I would say, but a HUGE one : )
AND I feel much stronger, not to say completely healthy.
//MariaJune 14, 2011 at 2:03 pm #50632
Thanks for the info. And since the only thing I’ve ever really been vain about is my hair, I really don’t want to lose it! So hearing that YOU didn’t lose yours gives me hope, even tho the doc says I will.
After reading from Karen in my other posts, I really want to get things under control so we can operate again and get my infusion pump working so I don’t have to deal with the Gemox. Then hopefully I don’t have hair loss or neuropathy. I will actually be getting a light dose of chemo during the pump use, but I’m not sure if it would stay as Gemox or not. And it will supposedly be light. I know the neuropathy comes as a warning that the body can’t take any more of the oxaliplatin, so hopefully we can get me off of it before that happens.
I’m happy to hear your neuropathy is getting better. I was not looking forward to those side effects, either, as I know that can be quite painful. I hope since the neuropathy is down to 25% that it’s only annoying now and not too painful. And I really hope it continues to improve daily.
I will look into Astragalus and Ashwaganda with my onc. She wants to know before I do any “alternative” meds so I will clear it with her. But since it’s on SK’s website, she should be okay with it, I would think…
KrisJune 13, 2011 at 9:32 am #50631mariaMember
I never lost ANY hair during my year with Gemox! After 13 rounds I had to stop due to persistant neuropathy. Now, 4 months after last treatment, the neuropathy is backing away each day. Remaining some, like maybe 25%.
On the Sloan-Ketteing website I found a list of herbs linked to Pubmed. Started with Astragalus and Ashwaganda as complemenary medicine. IJune 10, 2011 at 9:55 pm #5207
I’ve only seen 1 posting for this “cocktail” so I’m making another posting. I will be asking my main onc why she chose oxaliplatin over cysplatin. I’m sure there’s something I don’t know (of course, there’s LOTS I don’t know).
Last week I had my initial chemo treatment. 30 min. of prep drugs (benadryl, anti-nausea meds). Then the Gemzar started. They pumped it thru at 100 min. rate. After about 12 min. it burned my arm so bad they had to move the i.v. I decided there and then to get a port before the next chemo treatment. I made it thru the rest of the Gemzar without problem, then 2+ hours of Oxaliplatin. After it was done I felt fine, except for the sore bottom and back from those “comfortable” chairs. 5 hours is just a little too long.
I brought snacks to eat as I had no idea how I would feel. During the entire time I ate all of the crackers and granola bars I brought with me. I wished I had some “real” food.
I had a ride, as I didn’t know what to expect, and the drive is about an hour to treatment. I was tired from the benadryl, so was happy I had a ride home and didn’t have to drive.
The next morning, per dr’s orders, I took anti-nausea meds before getting out of bed. I felt a little queasy on and off, but never vomited. Ate light: had chicken noodle soup for lunch. Then the side effects that I experienced hit. There are a number of side effects to worry about. Nausea is number one: I am happy to report I never vomited the entire time. Unfortunately, I did experience some heavy-duty diahrea for 2 days. At least I know not to plan anything for 2 days after chemo. Sensitivity to cold is another side effect, and it is very strange to feel like your fingers are burning when touching something cold. I drank room temp water and other drinks for 2 or 3 days. And a rare side effect is a rash, which appeared on my hands and left arm on day 3. Dr. is not sure if that is a side effect or just bad timing. I guess we’ll see in another week.
All in all, the side effects were very bearable. I was relieved that it wasn’t as bad as I had been expecting.
Met with “local” oncologist today to look at blood work and discuss my side effects. My white blood and platelets are already down. So I already have to watch who and what I come in contact with. No raw foods, including fruits and vegetables. He seemed pleased with my report. He said my future chemo treatments shouldn’t be much worse than the first one. If I didn’t feel nauseous, I probably won’t. I’ll take the hives over nausea any day!
Two side effects I haven’t experienced, tho, that I WILL experience (according to him) are hair loss and neuropathy. The amount of hair loss is unknown, but I am preparing myself and looking to have some fun with wigs. The neuropathy is a side effect of the Oxaliplatin and will happen. It will help the docs determine when I need a break from the chemo.
That’s all for now. I get the port put in and my next chemo is the 22nd. I hope all goes just as well as last week. Then I will ask about future scans to see how treatment is affecting the tumor. Hopefully the chemo works well inside and starts shrinking that darned tumor so we can operate.
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