I would suggest that you contact Da Vita online. They deal with all these problems and tell you the significance between them. I have 3rd. Stage CKD since chemo and they helped and advised a lot.
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As I wrote in a previou s post on seizures which I’ve had for over 77 1/2 years now as well as being in hospice for pancreatic cancer “to me it doesn’t seem like someone did their homework on adverse affects of this medicince, or reporting its affects to the doctor.” I’m on it now for quite a few months and one of the manufacturers first notes were “may cause mood swings, problems sleeping and other factors of a similar nature–if such happen contact your doctor immediately.”
My personal view is that this medicine is not conducine for this persons treatment. They may have to re-evaluate other medicines even on a trial and error basis to attain the proper one for control.
Additionally, you could seek a second opinion, by another doctor to see if someting was overlooked in prescribing this medicine.
I’d strongly suggest that you further research or even contact Tuberous Sclerosis Alliance from what you’ve said. Adenoma Sabacum which I’ve had since 13 was diagnosed with a Woods Lamp as Tuberous Sclerosis. It travels and goes to major body organs and can also be seen as Ash Leaf Spots and Shagreen Patches around or at waist. TSC 1 and TSC 2 malfunction at time of conception is believed responsible as are family genetics. It also can be a carrier and slow growing cancer that is capable of mestasizing to other organs. Check it out more thoroughly to see other aspects.
Relative to experiences with that form of headache and even seizure–after
pressing for a sleep apnea test which proved negative; I pursued the matter
further. First, the peak of headache was always at the deepest part of my
sleep, also when I was most likely lightheaded on awakening.
I insisted the doctors involved place a programable Oximeter on my wrist at
bedtime. Consequently, results indicated “a Lower Oxygen content in my
blood, during the REM stage of sleep.”
Prescribed by using Oxygen for sleep, as well as puchasing an Oximeter or
two and using Oxygen when necessary. The matter resolved itself after over
a years use of Oxygen during sleep and has not needed to be used at that
point since. I also feel that part of the matters resolution was in age
and body change since entering Hospice for Pancreatic Cancer. “I get a
full nights sleep and am rested in the morning, except for the fatigue
initiated by the cancer.
I just couldn’t stay away. After reading your post/story on liver-pancreatic cancer; “I think you are personally in a speculative phase from what you’ve heard from others or even your own feelings.” At this point and as hard as it may be, you should try to enjoy as much time with your boyfriend, but also realize he is in a partial state of withdrawl from life.
I say this as a Past Mentor, as a 77 1/2 year old male who was put in Hospice two months ago, due to Pancreatic Cancer reaching and growing in the Liver, Spleen, GI and GU tracts. I continue to lose weight and have lost 2 1/2 inches in waist so far–let alone have lost diet and thirst=anorexia. With my Hospice team, The Lead Nurse, Social Worker and Chaplain, they are clarifying the reality of what I am going through insofar as the end of life. I seem often tired and want to sleep. That is understandable too, since his/my weight loss diet loss “we’re losing these things because we no longer have the diet to support the calories, infections and problems cancer has caused our systems.
He doesn’t want to be a burden onto you, per your story; so is less apt to specify feelings he knows could hurt.
One thing I would strongly suggest beginning “is contacting your doctor or hospital group for possible entrance into a Hospice group. There, they’ll give him and you the most individual support possible toward leading whatever time is left ‘a Quality of Life’ instead of its worry.” As for you, “I hope you will also realize that they can help you understand how to live with this situation, so that the strength in learning, faith, hope and perseverance may make you a stronger person yet.
Best Wishes to you both.
besrus5–Well, cancer comes in many types and forms. Insofar as Pancreatic Cancer and the one you posted, there are likely a few differences. First, after a follow up for my BPH surgery in 2009, My Urologist said “we aren’t going any further until after you’ve had a CT scan at North Memorial Hospital.” The next day a call from my Primary Care doctor said “it looks like you might have cancer and I’d suggest an Endoscopy to validate the type of cancer and any malignincy.” Two days later the Endoscopy showed (1) it was the part of which are responsible for the operation and control of The Isles of Langerhorns which controls your bodies enzymes (basically for digestion and (2)Hormones which affect the Thyroid function, etc.
The next point we had to discuss, a close friend, myself and the Oncologist was “what form of treatment were we going to pursue?” With my blood Baseline, pharmacological history due to epilepsy all my life and the size of the growth when diagnosed; we decided to go with 28 radiation treatments which guideways were pin pointed on my chest with 3 dye pins that would guide the rays toward the tumors hopeful destruction. The baseline and other tests didn’t show improvement–so another decision had to be made. Which type of chemotherapy would be the strongest, but least harmful to my system? Especially after a life on ani-seizure medicines for epilepsy.
It was determined that Adriamyacin and Streptozocin would be the most logical. Even at that time, I was told “you can have possible adverse affects to your heart operation at about 5 years later. Instead, my Kidneys went from normal to Stage 3 Chronic Kidney Disease, due to the toxcity of the chemo. At that point, I started watching my diet more closely.
The next step was continued Chemo treatment with Targeted Chemo, which went toward the tumor cells itself rather than whole body. 12 cycles of Sutent pills=1 Capsule a day for 30 days–times the 12 months. Then last, came Affinitor, another Targeted Chemo capsule 30 days for 3 months. Sandostatin was thought to be our last hope, since it was often able to shrink the growth size of these tumors. I quit after 2 shots, because I wasn’t about to spend 24 hours in the bathroom each time, nor did I want to be taking diahreals.
Throughout this period of time, I was advised by Oncologist, Dietician and staff; snack instaed of eat your meals so as to avoid constipation. Then my weight started going down, from a loss of 30 lbs. in 3 moths without trying. I also lost 2 1/2 inches around the waist. Finally, two months ago I signed a Palliative Care form with my Oncologist, which lead to my placement in Pancreatic Cancer Hospice.
Here, there is no more treatment, but only the desire to enjoy The Quality of Life during this end of life stage. The other factor in changing this was first (it was the Islet Cell of the Pancreas. Next, that mestasized to a solid liver growth and 2 uptake areas. Then uptake area’s were seen in the Spleen, in the GI and GU tracts. That was where my status was changed to Pancreatic Cancer. Since it was outside of its original area and as my Oncologis said “being in the liver meant it was now in my blood.”
It’s hard to go much farther than that due to the differences in our bodies systems and function. I know that I need a lot more sleep,naps, and have less energy. I’m 77 1/2 years old and seek to enjoy each day the best I can..
I am just getting ready to take my afternoon nap; however, I will be most happy to give you information that I have personally researched and studied since mine was diagnosed in 2009. Some treatments, adverse affects, mestasations and being put into Hospice two months ago. It’s 3:15 pm. central time zone now–I’ll contact you a little later–Kay Kramer
Aug 12, 2016 · How long do side effects last? - 1 1/2 year survivor in Breast Cancer
Ladies, Cancer is one of the most complex and overwhelming of diseases we can come to encounter. Most of you have come to realize as you travel this path that “there is no majic pill, chemo, or traetment.” That’s because our bodies all differ in their systematic actions and adverse affects relative to treatments often used–chemo too. Realize our age and body changes every minute of every day, which we often don’t see, but only feel when the burden becomes overwhelming to us, our body, or our desired pursuits in life. So what’s the answer, “it is that no one size fits all in most respects or aspects.”
My cancer started as Islet Cell, somewhat middle pancreas (that controls our bodies basic enzymes for digestion and hormones for other body operations). The first treatment was 28 radiation treatments. Next came 2 cycles of intravenious chemo that I felt and saw all types of affects with. The next thing that came, since we had seen positive results so far, was targeted chemo of 15 cycles–12 of pancreas and 3 of kidneys, where Islet Cell was said to mestasize too.
With every day, my diet became less, as did my energy and fatigue increased drastically in area’s I never thought possible. I tried one last item to slow the tumor growth and it didn’t work. Consequently, it had taken so much out of me, my system and my abilities, that walking a short distance for my meal; eating small snacks so as not to over burden my digestive system and even occasional sips came to tire or fatigue me to needing a nap more and more often. since my cancer had mestasized to several
As my Hospice team told me at their last visit, much energy is being sought by your body that you simply don’t have. Another item of concern to me was that even with the small amounts of food eaten, no energy was attained–because the Liver didn’t metabolise their contents properly into my system for absorption; but released them as waste. That was only part. The other part was that the chemo that was said capable of causing reactions 5 plus years after its use, had also caused my kidneys to enter Stage 3 Chronic Kidney Disease.
At this stage of my life, in hospice for only two months; things are becoming more noticeable. Having had 4 stages (types) of epilepsy I do feel was a blessing as noted by my Epileptologist–since”if or when you’d black out short or what ever, it seemed like the end had come. Similarly, I came to realize how those actions came to confuse the mind and body when the seizure was concluded. So I seek to enjoy the Quality of Life to its fullest and within my means, each day.