I am a newbee here. Finished with chemo and radiation in July 2015. On the mend having good days and bad but getting through it. I still have the gtube in place but just had a modified barium swallow test yesterday and did great. Today i had oatmeal for lunch and soup for dinner so I am smiling at how wonderful they tasted after a year of feeding tube only. I lost 50 pounds, and am down to 89 pounds now......good thing I am only 4' 11" !

My biggest problem is i am wracked with kidney stones forming. Yes, I have had A stone twice in years past but now they are overwhelming. In March I had 3 stone surgries in two days, they did put a tube in my back for two days to drain the ones they could break up. One stone was a whopping 23 mm, I really impressed the doctor with that one ! On June 23rd it was back to the hospital for surgery again. This time they broke up what they could but told me I have over 100 stones still in my kidneys, the biggest one now is a mere 12 mm. These stones seem to be a very rare, very hard type that is only seen about 1 per cent of the people with stones. The doctor says he can't even break them completely with the laser. He can only chip away at them. The urologist and the oncologist thought perhaps I was dehydrated so i had many, many hydrations during and after the chemo and radiation. Didn't seem to help.

I have searched and searched this site to see if this problem has come up for anyone else but have not found anything. Finally here is my question ...... could it possibly be from the nutrition I have been on for one year? (Chocolate ensure plus and TwoCal mixed together). Am I getting to much protein or something or not enough of something ? I wanted to try the Whey protein powder to gain some much needed pounds but I am afraid to try it and make matters worse.

I checked my BMI, it is 18 and by the numbers i am not getting way over in protein. I met with the nutritionists at my cancer center twice but they are stumped too. I did beg the urologist to do lab work last week and he finally agreed, the office called today to say everything was within normal limits. Not that I know which tests they did. For some silly reason I have to go to the office and pick up the lab report. Guess they don't have a fax machine ? They have certainly not been helpful with anything. I will be finding a new urologist. I do have an appointment with the ENT doctor tomorrow so will go over this with him.

Has anyone else had mounds of kidney stones form ? I feel like I can live with the extremly dry mouth and all the other stuff but these kidney stone attacks are killing me!

Jo, as I mentioned on your other post, we do have a member who had major kidney problems. I believe it was related to the chemo? Hopefully Paul will be along soon and will explain his situation in detail. There could be many things (besides protein) causing your kidney stones, especially since you have had them in the past.

High protein whey powder is not to gain weight, its to add more protein to the diet to help speed healing. Unfortunately, recovery from OC and its treatments take a loonnngggg time, a good 2 years. Significant weight loss is very common in OC patients/survivors. After what your body has been thru (somehow I feel it seriously impacts a persons metabolism) it can take years of higher intake before you see any weight gain. Even being over one year post rads, your body is still burning up calories incredibly fast. Recovery takes lots of energy! With your kidney problems, make sure to ask your doc before adding anything to your diet (esp. the high protein whey powder). I would also ask your doctor about checking your thyroid level and for males have to also their testosterone level checked.

As far as removing the tube, most doctors will not even consider it until the patient has been able to sustain themself (without further weight loss) for at least one month. I actually suggest hanging on to the tube for at the very least 2 months of sustaining your weight. At only 89 pounds, you couldnt possibly have much more you could lose. I also had significant weight loss from OC and its treatments. It landed me in the hospital way more times than I would like to admit. Please try to turn this around before you have the tube removed. Recovery is full of ups and downs, having the tube hang around (LOL) an extra month or 2 cant hurt. Always better to have it and not need it than to need it and its not there. Just remember to flush with water at least 2x a day even when not using it.

If you spent lots of time reading posts, Im sure you have come to realize Im the intake nag around here I would advise you to immediately start increasing your intake to at least 3500 calories daily. I know 3500 calories sound like it has to be too much. Its not! In fact you could even take in 5000 calories daily and probably would not notice any significant weight gain. It just reaffirms how hard your body is working to rebuild itself. Maybe the chocolate peanut butter milkshakes I used to make would help with your higher intake goals? Ive attached the list of easy to eat foods to help you with relearning how to eat.

Best wishes with your continued recovery!

List of Easy to Eat Foods


PS....
Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

The national kidney foundation has some suggestions on diets to reduce kidney stones - but it depends on the type of stone it is. You might want to print the recommendations and bring them in for your next Dr. appointment - possibly with another urologist. Best of luck handling this.
Maria

Jo,

I'm sorry for your troubles! I have had kidneys stones several years ago, as Christine mentioned. At the time, besides back pain, which I thought was due to weight lifting strain, my hemoglobin had dropped to 6, creatinine levels rose much higher than my normally higher levels from CKD, I think to 11, and was admitted to the hospital for blood transfusion, and ultimately found the cause were kidney stones via ultrasound and or CT scan, but they probably had an idea by my blood work, and symptoms. My doctors; Nephrologist, Urologist and Hemotogist/Oncologist waited to see if they would pass, but before I went septic since my bloodlevels were still abnormal they did laser surgery via urinary tract to break them, and needed several blood transfusions too, I believe was due to the erythropoietin disruption with the kidneys. If I wasn't already under two doctors care, someone else would probably have put me on dialysis as was suggested, but my nephrologist said he knew me, and my kidneys would recover, at least to my new stable levels, and did.

The urologist said the stones were uric acid, which he said were probably from chemo, and had broken easily. My chemo's were Cisplatin, Taxotere and 5-FU in '09, and Taxotere and Erbitux in '12. I'm not sure if other medical conditions, diet and dehydration contributed to such, but probably did. After this, I had a few visits with the urologist, who saw a small stone, but said it would probably pass, and continue to see my other doctors for close monitoring of other conditions too.

As mentioned, there are different types of kidney stones, maybe 5 are more common, as well as different possible causes for each, so maybe that could give you an idea what yours were from by speaking with your doctor, and possibly seeing other specialists.

I wasn't instructed to follow any specific diet or other restrictions, but I do try to keep adequately hydrated, and ask my doctors, as Christine suggested, before adding any protein drinks, some which are chemically enhanced, it's best to stick with basic ones, I believe.

I usually try to keep records of most my procedures, but haven't for the hospitalization in '13, except for the blood work before and after, so I can't refer to any notes, and just what I recall.

Forgot to mention they put a stent in to help pass the stones after lasered, which was taken out a week later in the doctors office.

http://www.nytimes.com/health/guides/disease/kidney-stones/print.html

Good luck.

Thank you very much for your reply and recipe. Working hard on nutrition here !

Maria, yes that is great advise, i will study the information from the National Kidney Foundation and take it with me to my next appointment. Thank you for the suggestion !

Paul thank you for your post. I will be seeing a nephrologist soon and will discuss any needed lab work. My family practice Doctor said she thought I would need to have a 24 hour urine test too but she would let the nephrologist take care of that. Sounds like you had a rough time with your kidney stones and it is great to hear you are now well past that problem.