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One HDIL2 experience

Posted Nov 04 2009 10:05pm

I first signed on to the Kidney Cancer Email list in 2007 when I underwent my nephrectomy for my single tumor. The list is a priceless encyclopedia of information and personal experience created by patients and caregivers alike. I have posted a few questions over the past couple of years and have received helpful comments and insight and have even made a couple of good friends in the process.

Last week a woman posted that she completed the HDIL2 treatment at Beth Israel and she was willing to discuss the experience offline. I contacted her and want to know what to expect. She wrote me a detailed account of her therapy and here it is. Her kindness and time are priceless in getting me mentally prepared for this next step.

———-
Thank you for writing. I haven’t been feeling very positive about all this, and I’ve absolutely no idea why. I will try to think about “CR” now, though I’ve only a few days left to do it.

Right then, I’ll try to outline my experience for you.

The first thing they will do is offer you an Ativan under your tongue in preparation for putting in the port. I found it had little effect at all, but I suggest you do it anyway. While my port was being put in I asked the surgeon why he chose this field, and whatever else came into my head at the moment as his responses helped keep my mind off the business at hand. There is a moment or two of discomfort (they give you a local), and at one point your heart feels a bit odd because whatever they are sticking in there irritates it for a second. The whole thing is done pretty quickly. It’s not as bad as some would have you think.

One symptom that occurs (mid week?) is mouth soreness. They have two two different mouth washes for that, and both help for a short time. I was miserable – the pain was awful. My tongue was red and swollen, there were sores, I tasted blood all the time, and my throat was on fire. When I went back in for the second week, a nurse asked me what were some of the worst side effects I had had. I mentioned my mouth, and she went and mixed a large bottle of water and baking soda (I think it was), and told me I could use as often as I wished. She said it might prevent my mouth from getting so sore, and it really did make a difference. The pain came back but it was not nearly as intense as it had been during the first week. You might request that stuff in the beginning. The other two mouth washes cannot be used that often. As I recall, one can be used 4 times a day, and the other, 3.

You will turn red and your skin will itch like the devil. You will also peel like mad. They will give you a bottle of generic Sarna, and that will help a bit. Have plenty on hand when you go home between weeks and at the end.

Will someone be with you in the hospital? If so, you can order food for both of you. Yes, you have to call to order your meals. A nurse suggested I order a couple of things allowing the food people to think it was all for me. If not, you’ll have to get a voucher for the other person, I believe.

I mentioned the benadryl with the HDIL injection in my email to the list. You might try it. The rigors (I had them once) were pretty awful. It began with an odd little chill in my back and immediately my body began to tense up in every peculiar contortion imaginable. The pain was intense – it almost felt as though my limbs would snap off. I don’t think everyone has them to the same degree. It took several nurses to hold me down until the shot of ativan was administered. You will probably have demerol, and I hear that works like a charm. Of course, if the benadryl works, you won’t need to worry about them.

One night, near the end of my second week, my blood pressure fell very low. At one point it was 70/40, and I think even a bit lower. It took them hours to bring it back up. I had no more injections after that. I think I ended up having 9 each week.

The last two days I was there I was pretty sure my room was in China. :) Things were moving around a bit, and there was Chinese writing on the floor. This might be as a result of some of what they were giving me. One symptom I’ve had for this disease is leg pain (that’s how I found it in the beginning – ‘05, when my kidney was removed). While I was in Beth Israel they gave me percocet and morphine for my leg, along with ativan (everyone seems to get plenty of that) and heaven knows what else. I suppose under the circumstances, China would be a somewhat tame destination.

Capillary leakage – I gained almost 30 lbs. week one, and almost the same for wk. 2. Lasic (sp?) got rid of it pretty quickly – just about 5 days to get back to normal each time. I had to wear slippers when I left the hospital both times, and very large sweat pants, HUGE, actually. Watch your salt intake when you eat the hospital food. The dr. I mentioned in my email to the list, told me to try to keep drinking fluids. Even though you are getting them in the IV, he said it helps to keep things (kidneys, etc.) functioning well if you can drink. He said not to force it. A time will come when you are so full of fluid you won’t be able to drink a drop. I actually had trouble taking my pills with sips of water as I became short of breath from all the fluid.

I had no nausea or diarrhea

Good luck to you. Let me know if you have any other questions. Remember, this only lasts a few weeks.

Do keep in touch and let me know how you’re faring.

Best,

E.

——

I have been through enough medical drama and pain to know that while these conditions sound intense, they also seem totally manageable. I have asked Melissa to document the whole thing as it unfolds and I will be writing as often as I can while I feel up to it. When I cannot write because of the treatment side effects, she will take up the task of posting on this site.

After going through four cancer-related surgeries (cardiac, nephrectomy, brain, brain again) I can deal with anything. Bring on the treatment.

I first signed on to the Kidney Cancer Email list in 2007 when I underwent my nephrectomy for my single tumor. The list is a priceless encyclopedia of information and personal experience created by patients and caregivers alike. I have posted a few questions over the past couple of years and have received helpful comments and insight and have even made a couple of good friends in the process.

Last week a woman posted that she completed the HDIL2 treatment at Beth Israel and she was willing to discuss the experience offline. I contacted her and want to know what to expect. She wrote me a detailed account of her therapy and here it is. Her kindness and time are priceless in getting me mentally prepared for this next step.

———-
Thank you for writing. I haven’t been feeling very positive about all this, and I’ve absolutely no idea why. I will try to think about “CR” now, though I’ve only a few days left to do it.

Right then, I’ll try to outline my experience for you.

The first thing they will do is offer you an Ativan under your tongue in preparation for putting in the port. I found it had little effect at all, but I suggest you do it anyway. While my port was being put in I asked the surgeon why he chose this field, and whatever else came into my head at the moment as his responses helped keep my mind off the business at hand. There is a moment or two of discomfort (they give you a local), and at one point your heart feels a bit odd because whatever they are sticking in there irritates it for a second. The whole thing is done pretty quickly. It’s not as bad as some would have you think.

One symptom that occurs (mid week?) is mouth soreness. They have two two different mouth washes for that, and both help for a short time. I was miserable – the pain was awful. My tongue was red and swollen, there were sores, I tasted blood all the time, and my throat was on fire. When I went back in for the second week, a nurse asked me what were some of the worst side effects I had had. I mentioned my mouth, and she went and mixed a large bottle of water and baking soda (I think it was), and told me I could use as often as I wished. She said it might prevent my mouth from getting so sore, and it really did make a difference. The pain came back but it was not nearly as intense as it had been during the first week. You might request that stuff in the beginning. The other two mouth washes cannot be used that often. As I recall, one can be used 4 times a day, and the other, 3.

You will turn red and your skin will itch like the devil. You will also peel like mad. They will give you a bottle of generic Sarna, and that will help a bit. Have plenty on hand when you go home between weeks and at the end.

Will someone be with you in the hospital? If so, you can order food for both of you. Yes, you have to call to order your meals. A nurse suggested I order a couple of things allowing the food people to think it was all for me. If not, you’ll have to get a voucher for the other person, I believe.

I mentioned the benadryl with the HDIL injection in my email to the list. You might try it. The rigors (I had them once) were pretty awful. It began with an odd little chill in my back and immediately my body began to tense up in every peculiar contortion imaginable. The pain was intense – it almost felt as though my limbs would snap off. I don’t think everyone has them to the same degree. It took several nurses to hold me down until the shot of ativan was administered. You will probably have demerol, and I hear that works like a charm. Of course, if the benadryl works, you won’t need to worry about them.

One night, near the end of my second week, my blood pressure fell very low. At one point it was 70/40, and I think even a bit lower. It took them hours to bring it back up. I had no more injections after that. I think I ended up having 9 each week.

The last two days I was there I was pretty sure my room was in China. :) Things were moving around a bit, and there was Chinese writing on the floor. This might be as a result of some of what they were giving me. One symptom I’ve had for this disease is leg pain (that’s how I found it in the beginning – ‘05, when my kidney was removed). While I was in Beth Israel they gave me percocet and morphine for my leg, along with ativan (everyone seems to get plenty of that) and heaven knows what else. I suppose under the circumstances, China would be a somewhat tame destination.

Capillary leakage – I gained almost 30 lbs. week one, and almost the same for wk. 2. Lasic (sp?) got rid of it pretty quickly – just about 5 days to get back to normal each time. I had to wear slippers when I left the hospital both times, and very large sweat pants, HUGE, actually. Watch your salt intake when you eat the hospital food. The dr. I mentioned in my email to the list, told me to try to keep drinking fluids. Even though you are getting them in the IV, he said it helps to keep things (kidneys, etc.) functioning well if you can drink. He said not to force it. A time will come when you are so full of fluid you won’t be able to drink a drop. I actually had trouble taking my pills with sips of water as I became short of breath from all the fluid.

I had no nausea or diarrhea

Good luck to you. Let me know if you have any other questions. Remember, this only lasts a few weeks.

Do keep in touch and let me know how you’re faring.

Best,

E.

——

I have been through enough medical drama and pain to know that while these conditions sound intense, they also seem totally manageable. I have asked Melissa to document the whole thing as it unfolds and I will be writing as often as I can while I feel up to it. When I cannot write because of the treatment side effects, she will take up the task of posting on this site.

After going through four cancer-related surgeries (cardiac, nephrectomy, brain, brain again) I can deal with anything. Bring on the treatment.

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