Bad News

Rockstar · 07-23-11, 09:50 AM

I was diagnosed with Melanoma several years back. I went in for my usual skin check, they hacked off a suspect skin sample and sent it in for biopsy. I get a call from my Dermatologist four days later on a Saturday of all days waking me at 7AM. Nothing to worry about she says but by the way she was saying it told a different story, horribly bedside manners.

Four days before I could get into surgery to have it completely removed and another 4 days for that biopsy report.

But that waiting. I was a nervous, ill tempered wreck the whole time.

It is no doubt difficult to get on with routine. But I second what Growler said, sit tight and take care of yourself first everything else is second. You can beat this.

Having been through this with someone I hope you don't mind the unsolicited intel.

Keep doing what you're doing research everything you can about this. It will help you to ask the doctors the right in-depth questions. It is important to write it all down take it with you.

When you start taking chemo try to have someone go with you to the doctors as well. There is a phenomena called 'chemo-brain'. Which MAY affect your speech and memory to a degree making it somewhat difficult and frustrating for you to ask questions and understand answers. Your doctor should be looking for this, ours did, an inability to put sentences together and or slurred speech is a sure give away to the care taker. Memory and speech will improve after treatment.

My wife was in a clinical trial so the type of chemo and dosage was not discussed. When asked how much the doctors only said she was getting both barrels we seemed to sense it was more than anyone had ever received before. Chemo takes on the fast growing cancer cells and unfortunately other fast growing cells like the ones in your nervous system too.

So be aware you may feel numbness in your extremities. This MAY lead to permanent damage in the long run. Like chemo brain it's something you need to keep your doctor and care taker informed of.

My wife was scheduled for a round of six chemo injections. She could only take four out of the six, she was ready to quit on the third but I pressed to do one more. She did suffer from nerve damage but has since recovered and leads a normal life.

Keep away from others with the flu or common colds. If you catch it they might suspend treatment until you get over it. Also the immune boosters my wife got to help build white cell count seemed to make her feel worse than the chemical therapy did.

This was about it as far as treatment went. The rest was up to her, diet, attitude, not letting it or anyone affect her life's routine (like swimming). We got very close during time though we weren't married yet. After treatment we sold everything, hopped on a sailboat and cruised for the last 6 or 7 years now. Life changed for us both. We don't work like other enduring that 9 to 5 rat race fighting to obtain the possessions we are told we must have. We don't even own a home just a 44 sailboat and two dogs. We found life is short as it is so we set out to enjoy it.

When you kick this cancers arse as I suspect and earnestly pray you will. Maybe I'll run into a boat named Feuer Frei! in the Caribbean. See you in Grenada!

Feuer Frei! · 07-23-11, 10:12 AM

Quote:

Originally Posted by Rockstar

It is no doubt difficult to get on with routine. But I second what Growler said, sit tight and take care of yourself first everything else is second.

Indeed. I have been teaching and prepping my mind to prioritize what's important. And what is not.
What is not important right now is that i resigned from my job, what is not important is that i will face financial difficulties. What is not important is all the material B.S. and what people will think of my appearance, whilst going through chemo.
What is important is to stay positive. What is important is to think of my 3 girls (daughters). What is important is to arm myself with whatever info i can obtain before the appointment on Wednesday with the Oncologist, and like you said, have questions at the ready.
Which i have already started. A list of questions has been begun, with more to be added, i am sure.

Quote:

Having been through this with someone I hope you don't mind the unsolicited intel.

Not at all. Infact it is welcome.

Quote:

When you start taking chemo try to have someone go with you to the doctors as well. There is a phenomena called 'chemo-brain'. Which MAY affect your speech and memory to a degree making it somewhat difficult and frustrating for you to ask questions and understand answers. Your doctor should be looking for this, ours did, an inability to put sentences together and or slurred speech is a sure give away to the care taker. Memory and speech will improve after treatment.

Oh boy. Something i wasn't aware of. Duly noted on my list of questions. Thanks.

Quote:

So be aware you may feel numbness in your extremities. This MAY lead to permanent damage in the long run. Like chemo brain it's something you need to keep your doctor and care taker informed of.

Duly noted as well. And more to stress about.

Quote:

My wife was scheduled for a round of six chemo injections. She could only take four out of the six, she was ready to quit on the third but I pressed to do one more. She did suffer from nerve damage but has since recovered and leads a normal life.

This relates to the numbness in your extremeties that you referred to? Or this is something entirely seperate?
Again, duly noted down.

I've had a look at the patient fact sheet from the hospital, which i linked to earlier on in this thread, and perused, in detail the side effects of chemo.
Now i assume that they are general side effects, since every person's system reacts differently to chemo.
May i ask politely if your Wife underwent any or most or all of those side effects whilst going through chemo?
The fact sheet is here:
https://www.eviq.org.au/LinkClick.as...s%3d&tabid=156

I'm curious as to wether the side effects described are a possibility, or if they all happen to every patient, or if the side effects may occur, if so, how many of them, how frequently, ie daily, weekly, hourly etc etc.
Thanks for keeping this thread alive, and helping me keep my hope intact and to stay on a positive path.

Rockstar · 07-23-11, 11:12 AM

Sorry, She was beginning to feel slight discomfort in her left side after the first treatment but it soon subside after a day or two. As it went on though the discomfort increased and took longer and longer to go away.

She's a strong women both physically and mentally but it was taking a terrible toll on her. By the third round, she was ready to quit. I was the one who convinced her to take a fourth. It was that fourth which put the discomfort and damage over the top. According to her there was 'something really wrong' after that one.

Being in a clinical trial the doctors could not help with decisions or recommendations, they were simply observers. But when the day came to visit the doctors to tell them she couldn't endure anymore. Hearing her symptoms and complaint they did their best to tell us without interfering in the trial she was making the right decision. It was without a doubt, time to quit and helped us both immensely with knowing she made the right decision. But it took 6 to 8 months for the nerve damage to even start getting back to normal.

The severity of what she went through should only be looked upon as an individual case and not as general symptoms for everyone. It had much to do with the type cancer, chemotherapy, radiation and dosage. We met many other patients in support groups who had gone through or were going though treatments but each varied in symptoms.

I would be more than happy to go over the fact sheet. But could not open it.

.

Oberon · 07-23-11, 11:34 AM

It's hard to know what to say in a situation like this, so I will just say that I'll be rooting for you and keep fighting, like Growler says, you've got the three best things to fight for.

Rockstar · 07-23-11, 12:41 PM

Ok got it open so I'll go by the numbers here and try to recall.

Treatment: Cancer research is always advancing and improving upon treatment therapy. The only one I recognize is Pegfligrastim which if I remember right helps increase white blood cell count during chemotherapy.

Allergic reaction: Though the chemicals used were different (I think) no allergic reactions to it.

Flu-like Symptoms: Yes, felt like crap.

Nausea and Vomiting: Yes, but it wasn't severe and usually happened after the Pegfilgrastim shot. Was given prescription anti-nausea meds to help.

Pain or swelling at injection site: No. Pegfilgrastim was injected in the arm by me at home. However, chemotherapy was administered at the hospital by IV through a vein in either left or right hand. Only problem there sometimes was difficulty in finding a vein they could use.

Red/Orange Coloured Urine: Yes, weird but no ill effects.

Bone pain: Yes and I think it came after the Pegfligrastim shot.

Changes in Sense of Smell or Taste: Yes, no ill effects with smell. Do not however eat your favorite food during chemotherapy. It is known some patients over the course of therapy will develope a strong dislike for it later. Hers was a toasted bagel with everything and cream cheese which she ate while the IV was in her. Now she can't stand the thought of eating one. Oh one more thing, after her first treatment she began to smell different the best I describe would be metallic. She also said most of what she ate tasted somewhat tinny or metallic too.

Low Red Blood Cell Count: Not aware of it. We were told the concern was white blood cell count.

Increased risk of infection: Yes your immune system will be affected by treatment. Big concern would be more time tacked on to treatment as they will most likely suspend it until infection is cleared up. But it didn't stop her from swimming or going to public places. In fact I was the only one who caught a cold, she never did.

Low Platelets and Increased Risk of Bleeding: Yes on the low platelets; No to any bleeding.

Sore Mouth: No

Constipation: Yes, over the counter meds suggested.

Common Side Effects associated with taking Steroid Medications: Hmm I don't recall her taking Steroid Meds. Even if she did I don't recall any of these symptoms, she slept pretty good. Appetite decreased though and I had to coax her to eat sometimes. I found many patients suffer from loss of appetite because they become depressed and give up. So DO NOT GIVE UP, EAT the good stuff and then EAT more of it. Stay away from processed sugars.

Numbness and Tingling in Fingers and Toes: If this refers to what I think it does. I learned chemotherapy kills cancer cells but also goes after certain other good cells too, including those part of the nervous system. It is something you should expect even after the first treatment. I think though it really depends on the type and dosage of chemotherapy though. Some we knew never had this problem.

Hair Loss: Oh Yes. we were at a cabin and when we woke up in the morning a lot of hair was on the pillow. It was a traumatic sight for her and really drove home the reality of the situation. Still though she recovered from it when the bell rang and came out fighting. Wasn't about to wake up another morning to see this happen again. So she took control and off she went to the salon with her sister and shaved her head bald!

One more thing your scalp may become very sensitive, making it hard to sleep. Changed pillows and pillow cases several times which helped a bit. Even went so far as making a soft flannel night cap

Feeling Tired: Yes. see Flu-like Symptoms

Changes in the way your heart works: So far so good she always been athletic and I think it paid off here.

Menopausal Symptoms: Nothing you have to worry about here.

Chemo Brain: Not seen on the fact sheet but I mentioned it before. A doctor though aware of it may tell you there is absolutely no scientific evidence to suggest chemotherpy can affect the brain in this way. Speak with other cancer patients and you will hear a different story. It happens so be aware of it.

Depression: Another not seen on the fact sheet. Though it doesn't happen to everyone it's something that everyone needs to be on the look out for, including you. I wish I could remember where I saw the statistics but cancer is not the number one problem for cancer patients, depression is.

I hope this help you know what you're up against. Not to add stress or worry you but to equip you to conquer.

I will always pray for you.

danasan · 07-23-11, 01:08 PM

Hair Loss:

I remember that very well. When it started, my girlfriend asked me to shave her head. I did and as a sign of taking part, I shaved mine as well.

FF, I can assure you, her hair came back much stronger, thicker and more beautiful than before. And it did not take very long. That is truth: The chemo's aftermath causes a refreshing of the cells.

Mine didn't come back better than before...

07-23-11, 09:50 AM	#1
Rockstar In the Brig Join Date: Nov 2002 Location: Zendia Bar & Grill Posts: 12,614 Downloads: 10 Uploads: 0	I was diagnosed with Melanoma several years back. I went in for my usual skin check, they hacked off a suspect skin sample and sent it in for biopsy. I get a call from my Dermatologist four days later on a Saturday of all days waking me at 7AM. Nothing to worry about she says but by the way she was saying it told a different story, horribly bedside manners. Four days before I could get into surgery to have it completely removed and another 4 days for that biopsy report. But that waiting. I was a nervous, ill tempered wreck the whole time. It is no doubt difficult to get on with routine. But I second what Growler said, sit tight and take care of yourself first everything else is second. You can beat this. Having been through this with someone I hope you don't mind the unsolicited intel. Keep doing what you're doing research everything you can about this. It will help you to ask the doctors the right in-depth questions. It is important to write it all down take it with you. When you start taking chemo try to have someone go with you to the doctors as well. There is a phenomena called 'chemo-brain'. Which MAY affect your speech and memory to a degree making it somewhat difficult and frustrating for you to ask questions and understand answers. Your doctor should be looking for this, ours did, an inability to put sentences together and or slurred speech is a sure give away to the care taker. Memory and speech will improve after treatment. My wife was in a clinical trial so the type of chemo and dosage was not discussed. When asked how much the doctors only said she was getting both barrels we seemed to sense it was more than anyone had ever received before. Chemo takes on the fast growing cancer cells and unfortunately other fast growing cells like the ones in your nervous system too. So be aware you may feel numbness in your extremities. This MAY lead to permanent damage in the long run. Like chemo brain it's something you need to keep your doctor and care taker informed of. My wife was scheduled for a round of six chemo injections. She could only take four out of the six, she was ready to quit on the third but I pressed to do one more. She did suffer from nerve damage but has since recovered and leads a normal life. Keep away from others with the flu or common colds. If you catch it they might suspend treatment until you get over it. Also the immune boosters my wife got to help build white cell count seemed to make her feel worse than the chemical therapy did. This was about it as far as treatment went. The rest was up to her, diet, attitude, not letting it or anyone affect her life's routine (like swimming). We got very close during time though we weren't married yet. After treatment we sold everything, hopped on a sailboat and cruised for the last 6 or 7 years now. Life changed for us both. We don't work like other enduring that 9 to 5 rat race fighting to obtain the possessions we are told we must have. We don't even own a home just a 44 sailboat and two dogs. We found life is short as it is so we set out to enjoy it. When you kick this cancers arse as I suspect and earnestly pray you will. Maybe I'll run into a boat named Feuer Frei! in the Caribbean. See you in Grenada! Last edited by Rockstar; 07-23-11 at 10:09 AM.

07-23-11, 12:41 PM	#5
Rockstar In the Brig Join Date: Nov 2002 Location: Zendia Bar & Grill Posts: 12,614 Downloads: 10 Uploads: 0	Ok got it open so I'll go by the numbers here and try to recall. Treatment: Cancer research is always advancing and improving upon treatment therapy. The only one I recognize is Pegfligrastim which if I remember right helps increase white blood cell count during chemotherapy. Allergic reaction: Though the chemicals used were different (I think) no allergic reactions to it. Flu-like Symptoms: Yes, felt like crap. Nausea and Vomiting: Yes, but it wasn't severe and usually happened after the Pegfilgrastim shot. Was given prescription anti-nausea meds to help. Pain or swelling at injection site: No. Pegfilgrastim was injected in the arm by me at home. However, chemotherapy was administered at the hospital by IV through a vein in either left or right hand. Only problem there sometimes was difficulty in finding a vein they could use. Red/Orange Coloured Urine: Yes, weird but no ill effects. Bone pain: Yes and I think it came after the Pegfligrastim shot. Changes in Sense of Smell or Taste: Yes, no ill effects with smell. Do not however eat your favorite food during chemotherapy. It is known some patients over the course of therapy will develope a strong dislike for it later. Hers was a toasted bagel with everything and cream cheese which she ate while the IV was in her. Now she can't stand the thought of eating one. Oh one more thing, after her first treatment she began to smell different the best I describe would be metallic. She also said most of what she ate tasted somewhat tinny or metallic too. Low Red Blood Cell Count: Not aware of it. We were told the concern was white blood cell count. Increased risk of infection: Yes your immune system will be affected by treatment. Big concern would be more time tacked on to treatment as they will most likely suspend it until infection is cleared up. But it didn't stop her from swimming or going to public places. In fact I was the only one who caught a cold, she never did. Low Platelets and Increased Risk of Bleeding: Yes on the low platelets; No to any bleeding. Sore Mouth: No Constipation: Yes, over the counter meds suggested. Common Side Effects associated with taking Steroid Medications: Hmm I don't recall her taking Steroid Meds. Even if she did I don't recall any of these symptoms, she slept pretty good. Appetite decreased though and I had to coax her to eat sometimes. I found many patients suffer from loss of appetite because they become depressed and give up. So DO NOT GIVE UP, EAT the good stuff and then EAT more of it. Stay away from processed sugars. Numbness and Tingling in Fingers and Toes: If this refers to what I think it does. I learned chemotherapy kills cancer cells but also goes after certain other good cells too, including those part of the nervous system. It is something you should expect even after the first treatment. I think though it really depends on the type and dosage of chemotherapy though. Some we knew never had this problem. Hair Loss: Oh Yes. we were at a cabin and when we woke up in the morning a lot of hair was on the pillow. It was a traumatic sight for her and really drove home the reality of the situation. Still though she recovered from it when the bell rang and came out fighting. Wasn't about to wake up another morning to see this happen again. So she took control and off she went to the salon with her sister and shaved her head bald! One more thing your scalp may become very sensitive, making it hard to sleep. Changed pillows and pillow cases several times which helped a bit. Even went so far as making a soft flannel night cap Feeling Tired: Yes. see Flu-like Symptoms Changes in the way your heart works: So far so good she always been athletic and I think it paid off here. Menopausal Symptoms: Nothing you have to worry about here. Chemo Brain: Not seen on the fact sheet but I mentioned it before. A doctor though aware of it may tell you there is absolutely no scientific evidence to suggest chemotherpy can affect the brain in this way. Speak with other cancer patients and you will hear a different story. It happens so be aware of it. Depression: Another not seen on the fact sheet. Though it doesn't happen to everyone it's something that everyone needs to be on the look out for, including you. I wish I could remember where I saw the statistics but cancer is not the number one problem for cancer patients, depression is. I hope this help you know what you're up against. Not to add stress or worry you but to equip you to conquer. I will always pray for you. Last edited by Rockstar; 07-23-11 at 07:08 PM.

07-23-11, 01:08 PM	#6
danasan Elite Spam Hunter Join Date: Dec 2009 Location: Flensburg / Germany Posts: 1,141 Downloads: 39 Uploads: 0	Hair Loss: I remember that very well. When it started, my girlfriend asked me to shave her head. I did and as a sign of taking part, I shaved mine as well. FF, I can assure you, her hair came back much stronger, thicker and more beautiful than before. And it did not take very long. That is truth: The chemo's aftermath causes a refreshing of the cells. Mine didn't come back better than before... __________________ "I invite you to go inside this submergible hole in the water where you can nicely hide from destroyers."

Thread Tools
Show Printable Version Email this Page
Display Modes
Switch to Linear Mode Hybrid Mode Switch to Threaded Mode

07-23-11, 11:12 AM	#3
Rockstar In the Brig Join Date: Nov 2002 Location: Zendia Bar & Grill Posts: 12,614 Downloads: 10 Uploads: 0	Sorry, She was beginning to feel slight discomfort in her left side after the first treatment but it soon subside after a day or two. As it went on though the discomfort increased and took longer and longer to go away. She's a strong women both physically and mentally but it was taking a terrible toll on her. By the third round, she was ready to quit. I was the one who convinced her to take a fourth. It was that fourth which put the discomfort and damage over the top. According to her there was 'something really wrong' after that one. Being in a clinical trial the doctors could not help with decisions or recommendations, they were simply observers. But when the day came to visit the doctors to tell them she couldn't endure anymore. Hearing her symptoms and complaint they did their best to tell us without interfering in the trial she was making the right decision. It was without a doubt, time to quit and helped us both immensely with knowing she made the right decision. But it took 6 to 8 months for the nerve damage to even start getting back to normal. The severity of what she went through should only be looked upon as an individual case and not as general symptoms for everyone. It had much to do with the type cancer, chemotherapy, radiation and dosage. We met many other patients in support groups who had gone through or were going though treatments but each varied in symptoms. I would be more than happy to go over the fact sheet. But could not open it. .

07-23-11, 11:34 AM	#4
Oberon Lucky Jack Join Date: Jul 2002 Posts: 25,976 Downloads: 61 Uploads: 20	It's hard to know what to say in a situation like this, so I will just say that I'll be rooting for you and keep fighting, like Growler says, you've got the three best things to fight for.