August 29, 2011 at 6:22 am #52180marionsModerator
peggy…metastases to the lungs have been reported on this site. Most patients seem to live with it although; I remember that our JeffG had to undergo three seperate plueridisis in order to find relief. Others like our Lisa, reported lung metastases in the beginning of 2009 and she did quite well without any intervention.
All my best wishes,
MarionAugust 28, 2011 at 8:20 pm #52179gavinModerator
It sounds like you all had a great day today watching Kaden play football. I was watching the news today and saw the effects of Irene with the wind and the rain etc, it looked quite bad. I am in the UK and we don’t get storms like that at all! But we do have other weather issues to deal with! I also used to play football many years ago and also had to play both defence and offence, I used to play centre and nose tackle. And having played many times in the rain as well, I’m sure that Kaden enjoyed it a lot as I did! Sounds like he is quite the up and coming athlete and I know you and John must be so proud of him.
Best wishes to you both,
GavinAugust 28, 2011 at 2:29 am #52178
Hi Lainy, Marion, Nancy and Gavin,
Yes, we are getting some effects of Irene. This morning during Kaden’s football game, we had three downpours and the wind was really blowing hard. We still enjoyed the game, though. Kaden played almost the whole game; they kept switching him from defense to offense. He loves sports, especially anything that has to do with a ball. He has been playing soccer, baseball, and basketball since he was 4. He had to wait until he was 8 before he could play football. Golf is also becoming popular with him. I’m just so glad that John is getting to enjoy these experiences with him. It has been raining steady and hard since about 5:00 today, plus the wind has gotten stronger. We are planning a trip to Nags Head, NC in October if John is up to it. Kaden loves to fish and the kids will be out of school on a Friday and Monday so we thought it would be a nice short trip for all of us. I saw on the news where Nags Head was getting hit pretty hard by Irene so I hope the fishing pier will still be there if we get to go. Thanks to all of you for being so kind and encouraging. It really means a lot to me, PeggyAugust 27, 2011 at 8:08 pm #52176gavinModerator
That’s great that John is back on his chemo and I will keep my fingers crossed for him that it goes well. Midget football sounds like just the right thing for John tomorrow and I so know that he will love it! And I am sure also that your grandson will love having his grandad watching him play! Sounds like a great day to me, enjoy it!
GavinAugust 27, 2011 at 5:48 pm #52177nancy246Participant
Hi Peggy, Glad to hear John was able to start chemo again. John sounds a lot like my husband Doug. He too does not talk about cc and tells everyone he is fine or good even when he isn’t. He has never even read about it, he leaves that up to me. He knows I am on this site and is glad it gives me such support. I report to him positive comments and enlightening stories. Are husbands are so stoic and brave.
Good luck to your grandson in his first midget football game! I hope John is able to get out and enjoy it. Fighting along side you here in Revelstoke B.C.
NancyAugust 27, 2011 at 6:38 am #52175marionsModerator
Peggy….The midget football game will provide the necessary uplift for your husband. Fingers are crossed for things to turn around and for his counts to stay right were they belong, up there.
All my best wishes,
MarionAugust 27, 2011 at 2:53 am #52174lainyParticipant
Sounds good, Peggy, you are on the right track. Midget football? That is so cute. Teddy used to love all the kids sports. Are you in the way of Irene????August 27, 2011 at 2:37 am #52173
John started back on chemo today. He is back on the gemzar/cisplatin/avastin. He was at the hospital about 7 hours today because his counts were pretty low and they wanted to give him the chemo slowly. They hope to be able to do it again next Friday, then follow up with a Neulasta shot so he will be able to keep the cycle going. Of course, we’ve been through this before and most times his counts drop way too low to get the next scheduled treatment but maybe this time it will be different. He was very tired when he got home and went to bed fairly early. Our grandson who is 8 has his first midget football game tomorrow and I don’t think anything could keep John from seeing that. Oh, we had an earthquake in Virginia the other day and our house was really shaking. It was such a strange thing and only 60 miles from where we live. I’m so glad I found this site; it’s full of so much information. PeggyPAugust 19, 2011 at 5:30 pm #52172katieloumattMember
Just wanted to add my welcome to the board. Here you will find the nicest people all fighting the same cause.
I concu with what Lainy has said in that a meeting with your Oncologist would be helpful before restarting chemo.
Thinking of you,
KatieAugust 19, 2011 at 11:07 am #52171cmParticipant
Peggy- life is hard on you- I have no words – I hope you find support from the website, your faith and those around you.August 18, 2011 at 5:38 pm #52170pcl1029Member
You are welcome.August 18, 2011 at 2:30 am #52169
We live in a small city in Virginia. We are not far from the University of Virginia Hospital which is where John had his surgery. We see a local oncologist who is with the HOPE Center at our local hospital. I believe when John had his first scans after starting the gemzar/cis it showed that some of the tumors had shrunk a little but none had disappeared. The next scans showed that things were pretty much stable. These last scans are the ones that the radiologist didn’t compare to the previous ones so the NP said she would have to review the others before she could tell us anything. I asked for a copy of the report so I could see what it said. That’s when I noticed that it was talking more about nodules in the base of the lungs and denser lymph nodes plus progression of the tumors in the liver which didn’t sound too good to me. John said he was expecting the progression since he had been off chemo for almost 3 months. He doesn’t like to talk about his condition so he doesn’t know I am on this website. If anyone asks him how he is, he always says he’s great or fine, but I know differently. We have been married for almost 36 years so I think I know him pretty well by now. We are raising two of our grandchildren (ages 13 and and they have completely worn him out over the summer. He loves them so much that I honestly believe that between them, prayers, and God these are the things that are keeping him going. When I read some of the other posts, I feel so blessed that he is still with me. I was with my dad when he died in November from a very aggressive melanoma. I held his hand all night in the hospital and prayed that he wouldn’t have to suffer any more and could go join my mom who had died in June. When the nurse came in that morning, she told me to call somebody to come be with me because she didn’t think he would last much longer. My sister, brother and I were all there when daddy took his last breath and it did appear as if a peace had settled over him. I just pray that John will not have to suffer when the time comes because I love him too much and I don’t think that I will be able to handle it. Well, too much sad talk. Thanks for your concern, PeggyAugust 17, 2011 at 11:57 pm #52168pcl1029Member
I just do not understand if your husband was on Gemzar/cis/Avastin from Jan.2011 till May 24,2011 and still had “more nodules of the lungs and lymph nodes” as you indicated;unless I do not understand English well or something was missing from your description about your husband’chemo treatment;the old regimen of Gemzar/cisplatin/Avastin clearly was not working. Why the doctor put him back on the same chemo minus Avastin this time.?Did he think that Gemzar/cis this time will work after the failure of 9 cycles of the same chemo with Avastin? Most of the time ,the doctor will discontinue Avastin when it produces side effects such as colon perforation or liver abscess and continue to use Gemzar/cis if the regimen of Gem/cis works(ie: tumor shrink(partial response) or not growing(stable response)etc.) In your husband’s case none of the above responses happened;so it leads me to conclude that the Gem/cis regimen is not working When you indicated that more lymph nodes and lung nodules involvement after 9 cycles of treatment.
Again, I am not a doctor,I am just a patient who happen to know a bit more about chemo like many others on this site.
You know,sometimes doctors cannot be 100% right too,but I may be wrong.
where do you live? Can you get another oncologist who does NOT belong to the same group of practice and get a 2nd opinion on the treatment plan.
In short,I am confused about the logic of giving the same chemo base on the information you provide.and please forgive me for my tone of voice in writing this;I just concern about your husband’s treatment.August 17, 2011 at 8:32 pm #52167nancy246Participant
Hi Peggy, I agree with Lainy that you should get your scan results right away after a scan! Can you go to your GP to get the results? Everything is on computer now, so he/she should be able to look it up. On a plus note they are going ahead with chemo so must feel it will be beneficial for him. Fighting alongside with you two up here in Revelstoke B.C. Hugs. NancyAugust 17, 2011 at 7:11 pm #52166lainyParticipant
Peggy, I am very upset about your husbands scans! Sorry, but this brings out the fight in me. I have never heard of a CC patient having to wait almost a month to talk to their ONC about their latest scans. Too me, that is unacceptable. He is not talking about the scans but is proceeding with treatment? I am so sorry, maybe I care too much but I would get another opinion! Heck, I would get another doctor. Please, what city is he being treated in. You REALLY need a 2nd opinion. John is Stage IV and this Oncologist is giving you no attention at all? I would call and INSIST on talking to the ONC and if they won’t let you do that then something is very wrong with that office. I feel so bad you have to go through this but honestly as an adovcate I can tell you we get very few second chances with CC. Please let us know what happens if you go forward on this.
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