kvolland
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My husband’s family is riddled with cancer….once of which is colon. I will always wonder if that is a link somehow. I look at where they lived for years…..downstream of an apple orchard which is now a golf course. I always wonder about the pesticides and what not that flowed in that creek. Mark is on his second cancer in his life time, his mother has had multiple primary cancers (lung, colon, uterine) and his grandfather died from prostate (aggressive form) with mets to the brain. They did say that his tumor was in the area of the original radiation from his Hodgkin’s so that may play into it. So many factors, it would be nice if they could figure it out.
Then we look at my son and his thyroid cancer….there is NOT one risk factor for him to have it but yet he did. Now he had a greater risk of further cancer and his children now have a greater risk.
KrisV
Ah Lainy, you know it can never be easy….that’s why we are all hear….we didn’t get th easy path. I wish it was that easy….remember though, you know your body and you don’t feel like anything is wrong so you are good.
Keep us posted.
KrisV
Congrats Lisa! Way to go. We were so happy to be done yesterday although I think I was happier than Mark. He’s just so tired. But he did ring the bell when he was done.
Now get back to biking and hopefully things will be smooth sailing now.
KrisV
Leslie –
One approach you may try, using the link about that Gavin posted, scroll down toward the bottom, there is a spot for recruitment and it give the names and contact information for the two places they study is recruiting at (when it starts). There are email addresses for both, I would email them and see what conditions are needed…..may be able to answer some of your questions. Most studies on the http://www.clinical.gov site have some sort of contact information. I would think it would vary from study to study.
Hope that helps.KrisV
Dear Leslie –
Welcome to the best family no one wants to be a part of. I am with Kris….breathe. You have come to the right place for assistance and support. I do not know much about trials since my husband has not needed to go that route yet but you will find plenty of people who are going to be helpful.
One thing to remember that this is such a rare disease that there is no “set” treatment for it….there are trends such a Gem and Cis or Ox. There are different radiation that can be used. And lots of other things that are being use. You may want to look at a second or third opinion. Sometimes what one doctor doesn’t do, another will be willing to do.
Keep us posted and hopefully you will get your answers.KrisV
Porter –
One thing our Onc said was that blood counts tend to be their lowest 7-10 days after treatment so that’s the area where to be the most careful. I was pretty hard on the family about visiting. Everyone had to have a flu shot this year – including anyone that was planning on visits and then there was alcohol handwash everywhere in the house. Anyone that came in had to use it. We even had the little one due it too. I was pretty OCD about it and upset my oldest son at one point….he came over and was sick so I had him leave…he didn’t think that was fair and I kind of chewed on him about not being fair to dad. I think he gets it now. We also avoided family gatherings and other places that could get him close to someone that was sick.
It worked out well. He only got sick once during the six months of treatment and it was a sinus infection that I am not sure we could have prevented.
Hope things work out for you with this.KrisV
Like both of these. I am keeping track of these to share with my patients once I go back to work.
KrisV
WooHoo! Lisa so glad that you are almost done….and on the same day too. It’s been a long haul for you.
They talked about holding Friday’s dose and making it up next week. Were worried that he had too much radiation in one day with the x-ray and the CT scan….I asked if it really mattered and they said no and let us do it. No interferon though so that helped some.He had three bouts of the sepsis last summer and it was horrible. Nice thing is he usually perks up with antibiotics.
Well, we are almost done but I think if we weren’t so close, Mark would cry Uncle on it! We spent Friday morning in the ER. Woke up to 101.7 temp that would not respond to Tylenol so instead of infusion center for fluids, we were in the ER to rule on infection. Ugh! They initially thought he was septic…temp up, pulse up, BP down low (83/46). His white blood cells were only 2.7 on Wednesday so they were worried. After two liters of fluid, CT scan, blood work and x-ray, they found nothing but a possible sinus infection. Back on antibiotics then home after radiation treatment. He was upset because the chemo was going in the port so they had to start lines and do peripheral blood draws. Not fun. Two more radiation doses next week then off chemo on Wednesday and he is done.
This has been a definite rough go. I think if his first 6 months of chemo (Gemox) had been like this I bet he would have said no to this round of it. But we are almost done.KrisV
Crissie –
I agree with Kris, don’t put the cart before the horse. Everyone reacts differently to chemo. I would prepare for the cold sensitivity which seems to get to everyone at some point but again varies from person to person. Gloves, warm socks, warm drinks and sweaters seem to work best. Also have him be honest about any numbers or pins and needles that won’t go away. My stubborn man wasn’t honest and has some mild permanent neuropathy but he says he will live.
Hang in there. Remember we all react differently.KrisV
Lola –
A lot of it depends on how much of a surgery they are doing, how long it will be and any other problems your mother might have ie, diabetes, heart disease, etc. My husband is only 50 but his surgery was 14 hours long and 12 days in the hospital…..extreme by anyone’s standard but I was overwhelmed when he came home and I am a nurse. I would suggest that you maybe think about visiting nurses for at least a couple of weeks post-op just to help you dad out. Her insurance should cover it at 100% especially if she has Medicare. It just helps to have that second or third or fourth set of eyes.
Some people will fly through surgery and others will struggle. Definitely assess how things go but I would always opt for help if available.KrisV
Julie –
You are the first person that I have heard refer to the type 1.5 diabetes. My husband has that and everyone looks at me like I ma crazy when I try to explain it….even some doctors. My husband had radiation as a teenager which hit his pancreas so he doesn’t produce enough insulin and then he has the insulin resistance due to age and weight. Although at this point even though he lost weight, he’s only been able to drop taking meds, not his insulin.The steroids after the chemo did play with his blood sugars some. He popped up in the mornings from less than 130 to low 200’s but usually after three days it returned to normal. I just made sure that he ate more protein right after chemo which helped some. His A1c has actually been better through all of this. It used to run 9-10 and now usually less than 8 although I suspect it is more related to 50# weight loss in the last year. His Lantus insulin has dropped form 50 units twice daily to 20-30 units twice daily (more if taking steroids) and then hardly using his sliding scale.
While your wounds are healing though, I do suggest that you increase your protein intake. Your body needs more while its healing so it can use the protein as building blocks. Stuff like Glucerna to supplement meals can help. Carnation Instant Breakfast is pretty good too and we found it in premixed bottles that he likes too.
Hugs, KrisV
Porter –
Yes the cold sensitivity is a type of neuropathy….it’s an irritation of the nerves and the cold sensitivity is not a permanent type (or shouldn’t be) and the true neuropathy in more permanent or at least long term.
Mark said the cold sensitivity was pins and needles, not numbness although I suspect it varies for everyone. He said that when he drank something cold or drank something to fast it was like drinking shards of glass. He also said a cold wind felt like he was being sand blasted. The cold sensitivity was bad for him from day 1, treatment 1.
Hopefully your doctor called you back and things are feeling better now.KrisV
Julie –
Sounds like a pretty normal abdominal incision. They seem to do that a lot. Glad you worried for no reason….that’s always the best type of worry because then it goes away
KrisV
I agree with Kris 100%, you need to make noise. I always say the squeaky wheel gets greased. Both the nurse practitioner and the doctor have bosses, usually an administrator of some sort and you may need to express your concerns to them.
There is no need to anyone to put up with rude doctors or other staff. Yes, they are there to help us but we are consumers just the same. We would not put up with this type of rude behavior from anyone else….your waiter/waitress, the hotel clerk, even the cashier at McDonald’s, why should we put up with it from our doctors.
I would seriously look for another doc. We did this with Mark’s radiation oncologist. The first one was just too negative.Keep us posted.
KrisV
