malinger2
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Mary Beth, Nothing really to add except that I am continuing to pray for Rob, you and the family. It is so difficult as a wife and caregiver to see her husband suffering or not at top speed. Being positive is so very important and your biggest job now, I imagine as it is for me. Rob and my husband John have similar backgrounds in that both had tumors discovered incidentally and had a successful resection shortly thereafter. Hoping and praying that the chemo knocks this thing on its behind.
Just wanted to send you my positive energy and thoughts.
Melinda AI’m so sorry to hear about your sisters diagnosis. It was very scary to hear it as well. You have come to the right place. There are many threads on this site that can tell you about hospitals and procedures from many parts of the world. Make sure that you find a hospital that has extensive experience treating cc. I’m sure that Gavin will jump in as he is in your general vicinity. We are in So. California and are being treated by Dr. Singh at City of Hope. Dr. Fong, from Sloan Kettering just took over here as Chief of Surgery. He has a very good reputation as well.
The diagnosis is overwhelming, but read through many of the threads and do searches to find specific information. Others will join in to help as well.
Just keep looking and keep fighting.
God Bless your family.
Melinda ALove how we refer to each other as Melinda A and B. I have a niece named Melinda too and we call her Melinda B! Didn’t know that there were that many of us around.
Thanks for your input. John has decided to stay the course and complete chemo. Hoping that his fog doesn’t get too much worse by Thanksgiving and hope that whatever comes after chemo will be something that he can handle emotionally. You guys are right, what’s the alternative? I’ve decided that we will just do a lot of day trips to keep his mind occupied and off of the side effects. Hopefully the 100 degree temperatures in So Cal will subside in a few weeks and we can get out and about a bit more.
Be well,
Melinda AHi Serena, glad to hear that your mom was a candidate for resection and that they got clear margins. This was the case for my husband as well who had his surgery in May. He decided to go ahead with the chemo for 6 months. He receives two drugs referred to as gem/cis. I’m not going to lie, FOR HIM, the chemo has been tough just recently…particularly with no appetite and chemo brain/fogginess. Last week, after 4 months, he was thinking of stopping the chemo, but decided that he has gone this far, he can handle the last 6 infusions. People on here will tell you that everyone responds differently and that is absolutely true. Some people have little or minor side effects. They will also say that there are no wrong decisions, it is very personal. That is also true. Only your mom and you can/should make the decision to go with the adjuvant chemo. That being said, there are meds for nausea and appetite. Marinol also helped him some.
Good luck with the decision. I know it is a difficult one. I didn’t give you much additional info, other than what we decided and what we are dealing with. Whatever choice you make will be the right one for you. We decided to made a decision and not look back.
Best of luck to you both.
MelindaThanks Cathy, Julie and Duke…you’re right about the roller coaster effect, perfectionists getting hit hard, and the ever present opportunity to attend the day’s pity party. The caregivers get invited to these parties too I think. John does take appetite and nausea meds but Megace was not an option since he is on blood thinners. He started a new anti-depressant and I have seen some encouraging changes. Just gotta keep moving forward and as you said before, Julie, the alternative is far worse than a lapse of a word or concept.
Thanks all for taking the time to encourage and share your stories. Sometimes, it just gets a bit overwhelming. We’ll get to Thanksgiving and we will be celebrating his last dose of gem/cis, I’m sure.
Be well,
Melinda AIowagirl, I had read some of your earlier posts when I was searching for a similar story as my husband’s. Your response is exactly what I was looking for. I guess I was using the terms “chemo brain” and “fogginess” interchangeably and you do make the distinction. I think what my hubby finds most disconcerting is the fogginess, sad feelings, overwhelming emotions at times. Of course, word retrieval is problematic and worrisome to him, but not the same as the whole foggy feeling. If he sticks with the chemo, and has a similar recovery as you, then hopefully around Christmas he would feel like donning the red suit once again.
Thank you so much for your response. I know it is “your story” and not indicative of all chemo patients, but helpful to hear it.
So happy to hear that you are getting back to your normal perky self. Best wished for additional recovery and beating the CC beast.
MelindaTom, I think you and Ben have touched the hearts of many people fighting the good fight, or supporting those who are currently faced with the cc challenge. Enjoy every minute of your stay at home. Your decision took a lot of courage but I think it was definitely the right one. Peace…love…hope.
MelindaDear Tom and Ben, Just read through all 6 pages of your posts and will include you both on my prayer list. I know it is trite to say, “Stay strong”, but you have so many people pulling for you. Sounds like you’re getting good care. I agree with Lainy, although it is definitely your decision to attend the wedding, I would advise you to go. Ben’s sis in law will, I’m sure, take great care of him and will let you know if there is anything to bring you home. Caregivers really do need some time away to recharge and be ready to face the next chapter.
Positive energy and healing thoughts to you both.
MelindaWelcome to a great site. I have read many links and posts from members and they have given me not only invaluable knowledge, but hope. Glad you are getting a second opinion. My husband’s cancer also spread to his liver and they were able to remove it and follow up with chemo. Hang in there. You are not alone. Best wishes for your dad.
Hi Darlene, I’m so sorry that you are going through all of this as many of us are. My husband had great blood work, cancer markers normal and found the tumor incidentally due to blood in the urine. His only symptom was an unexplained weight loss, no itching or pain. We started with the surgeon as well and was told that he would either do the chemo first or the resection if he was able. My husband was diagnosed in April 19 of this year and had a resection for his 8x6x3cm tumor on May 2. Dr. Singh at the City of Hope in Duarte, CA took on this very difficult surgery which was followed by the gem/cis regimen similar to what you are going through. He had his three month scan on August 4, and is still cancer free. We will go for six months and then have another scan. I would agree with the posters up above to get a second opinion from a hospital that has extensive experience with cc. I think doctors and hospitals that do these resections frequently are better able or more willing to take on difficult cases. I’m not saying that doing chemo to reduce the size of the tumor is the wrong way to go, I’m just saying that some doctors are more aggressive at tackling these tumors that turn your world upside down.
Best of luck to you with your chemo treatments and upcoming scan on the 2nd. Stay head of the nausea with the meds that are prescribed and allow your body the rest that it so desperately craves.
Hang in there.
God Bless,
MelindaBest news possible for three month check up. We just saw Dr. Gangandeep Singh at City of Hope and he explained that the shadows on John’s three month ct scan were surgical remnants, meaning scar tissue and fluid accumulation from his resection on May 2. John remains cancer free and blood work is good. Continuing with Gem/Cis until Thanksgiving, for a total of six months. I guess we will truly have reason to celebrate at this Saturday’s family party at our house. Thank you all for your positive energy, prayers and encouragement. they kept me going until our appointment today. Nothing but great things to say about Dr. Singh and City of Hope for giving John the benefit of the doubt and doing the resection when others might have said it was inoperable.
MelindaWhat a beautiful poem Lainy thank you for that…you’re right, I got nothing I wanted and everything I needed. I will try to focus on this as I head into the day and weeks ahead of me. Some of your message is so familiar to me, especially the scrambled eggs with cheese and then apologizing because they tasted salty or “off”. I will try again with the Carnation and bananas…I will keep trying and will be strong. Thankful that our son will be home from DC on Friday and a family get together is planned for the 23rd. Both things to look forward to. I have to just keep positive, while recognizing his need to vent and just “be”.
Thank you all. We’ll see how the day goes.
Melinda A.Dear Marion, Melinda B, Mary Beth, Gavin and Lainy,
You don’t know how much your posts have helped. We just returned from dinner which John picked at and the whole time he was just so discouraged. It’s so hard to carry on a conversation when he is afraid and disappointed that his chemo brain is preventing him from doing the things that came so easily in the past. John was a school principal for 37 years, all at the same school for severely handicapped students. The children were with him from age 3-22 and he often offered the only hope and inspiration that these parents received in a public school setting. Now, with his health in jeopardy, he doesn’t allow himself to look beyond this blip in his treatment course.
The chemo is indeed been cumulative as this, his fourth round, is manifesting itself with longer and more severe nausea and lack of appetite. I know to push water and meal replacement shakes, etc., but it’s just so hard when you see your Rock of Gibraltar start to chip and erode.
I will call tomorrow and see about getting an earlier appointment with Dr. Singh. The 25th was a date established back in May after his surgery. I know that I will be able to work something in as his doctor is such a compassionate man.
We will get through this and if it’s bad news, we will weather that storm as well. It just sucks that a man who lived his live in service to his beloved severely retarded and handicapped children, can not have more than 2 years into retirement before faced with such an aggressive and deadly cancer. I have read success stories on this site. I know that people are walking miracles and have made it. I guess I’m just finally having a moment, brought on by seeing such a strong and caring man in pain.
To Rob, Mary Beth, and all those facing the anxiety that accompanies the wait…my prayers are being sent up for you all. As always, thank you all for your support and God Bless.
Melinda A.
