Side Effects? - 1244176

brigitte
Posts:49

Dad is 17 days past his 2nd alimta + cisplatin infusion. Dad has this whitish - well Mom only had a quick glance, but she says its not really a rash, but looks like when you get sunburnt and then afterwards skin looks whitish and ready to peel, although Dads is not peeling nor is it flaky.

Anyone here have anything similar?

I have looked up side effects in the cisplatin and alimta leaflets online but nothing sounds like what he has.

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Reply # - July 8, 2012, 02:30 PM

Dr West
Posts: 4735

Various skin issues can happen uncommonly with Alimta (pemetrexed), but that doesn't sound like anything I recognize from the mental image. You can certainly show that to the doctor when he goes back in (presuming he's due back in 4 days, whether he does more treatment or not). I'll be interested to know if there's a clear answer available.

-Dr. West

Reply # - July 8, 2012, 03:14 PM

brigitte
Posts: 49

Dr West he is due back for chemo on the 12th for hydration and chemo on 13th. Will definitely ask the oncologist what he thinks and will update here.

Reply # - July 13, 2012, 02:41 PM

brigitte
Posts: 49

Dr West, Dads oncologist said the skin rash? (Dad still would not show me himself) is one of the side effects from cisplatin. My Dad has had psoriasis for many year and today told me that for the first time in many, many years, his skin is totally clear and his buttocks which was quite badly affected is like a babies bottom. He says its since the chemo this has cleared, so not sure if this is normal, but thought I might mention it.

His supraclavicular lymph node was apparently 7x5 cm and is now 2x2 cm and the opposite side of neck has small lymph nodes and these are no longer palpable so the oncologist said he is very pleased. Since hearing this Dad seems more upbeat and seems to feel more positive.
Hope it lasts :)

Thought I should update the docs and members as all of you have been very helpful.

Thank you everyone and docs.:

Brigitte

Reply # - July 13, 2012, 07:15 PM

Dr West
Posts: 4735

Glad to hear that even though the treatment has been rough, it certainly sounds like his response to the chemo has been very good. It probably makes it far more worthwhile to persist with the side effects if your father at least knows it's doing something positive for him.

I've definitely heard of people whose psoriasis or other skin condition improves dramatically with chemotherapy (any of several) or with an EGFR inhibitor. I have a patient or two now who have relayed that same favorable side effect.

I hope your father continues to show further improvement and has a renewed sense that all of his efforts to get through challenging treatments haven't been for nothing. Congratulations.

-Dr. West

Reply # - July 20, 2012, 12:31 PM

brigitte
Posts: 49

Dad had 3rd round of chemo on the 13th July. Its been a week now and he is complaining of feeling so bad. He is constipated and cannot tolerate drinking movicol as he says it makes him nauseous. Refuses to use a suppository so got him some oral laxatives today. He does not explain very well but says his stomach is bothering him. ??

Could being consipated after chemo cause him to feel quite bad?

Reply # - July 20, 2012, 01:04 PM

catdander
Posts:

Hi Brigitte, Constipation can indeed make one feel very bad. It can be painful and cause nausea and be dangerous. Below is a link to a good explanation of the causes, symptoms, and possible fixes for constipation. It can get very complicated and dangerous if it gets out of hand. My husband has been lucky in that he has kept his under control with the use of a natural laxative and stool softener combo.

http://cancergrace.org/cancer-treatments/2009/06/02/cancer-related-cons…

Hope this helps,
Janine

Reply # - July 20, 2012, 01:58 PM

brigitte
Posts: 49

Thanks Janine, Did call the oncology dept and get advice on which laxative to use. Thought constipation might be why my Dad is feeling quite awful the past 2 days and stomach not feeling good but wanted to know whether my suspicions were right.

Thanks for the link to that article. It makes more sense now. Hopefully the laxative sorts Dad out and in a day or 2 hopefully he starts feeling a bit better.

Much appreciated

Brigitte

Reply # - July 20, 2012, 09:41 PM

Dr West
Posts: 4735

I'm sorry for what he's going through. I think Janine provided the link with the most valuable insights here.

Good luck.

-Dr. West

Reply # - July 24, 2012, 02:51 AM

brigitte
Posts: 49

Thanks, Dad feels much better after the laxative worked. I have another question for the doctors...or possibly other members.

Pre cancer diagnosis everything my Dad ate tasted abnormally sweet and so he was put off eating and lost quite a bit of weight. Post diagnosis and till now, he is still complaining of everything tasting too sweet and he cannot get food down. Post chemo this is even worse and is not so bad for about a week before the next chemo.

I did mention this to the oncologist but he did not seem to think it important and just asked if my Dad has a metallic taste which he does not.

I came across this article pre cancer diagnosis http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077685/ but none of the doctors seem to think the sweet taste is relevant. Am I interfering and questioning too much?

Would it make sense to ask for tests to be done to see if Dad has hyponatraemia caused by the syndrome of inappropriate antidiuretic hormone secretion SIADH? or have the doctors here come across many patients who have symptoms where everything tasted sweet pre diagnosis and post chemo treatments and which does not improve.

Dad is drinking 1.5-2 litres of water daily as the oncologist said it was important.

If it should make sense to ask for test, what type of tests could be done?

Thanks,

Brigitte

Reply # - July 24, 2012, 07:54 PM

catdander
Posts:

Brigitte, I'm sorry to get back to you so late. I read the article you posted to this morning then promptly lost your post and just now found it again.

I will send a request for a doctor to respond.

I hope your dad recovers from such a odd symptom,
Janine

Reply # - July 24, 2012, 09:05 PM

Dr West
Posts: 4735

I don't know that a perception of a sweet taste suggests anything in particular. Syndrome of inappropriate anti-diuretic hormone (SIADH) can be readily ruled out by a normal serum sodium, and that's probably being checked already in routine follow-up labs. And to my knowledge, SIADH isn't associated with perceiving foods as tasting too sweet.

I don't have a suggestion for a good test to do. If his routine blood tests, including salt balance, kidney function, and liver function tests are OK, I don't think I could offer a suggested workup to further evaluate this.

Good luck.

-Dr. West

Reply # - July 25, 2012, 06:40 AM

brigitte
Posts: 49

In that article (link above) it did say that the sweet taste is quite rare. Would really help if we knew how to improve this so that he can eat again as he has lost more weight.

Thanks Dr West for your response.

Brigitte

Reply # - July 25, 2012, 09:17 AM

certain spring
Posts: 762

I think it would be reasonable to ask if someone could check the sodium levels on your father's blood test reports, especially since this phenomenon pre-dates his diagnosis. Taste changes are so common with chemotherapy that everyone is going to assume this is a chemo-related problem. Since your father is actively losing weight, I don't think it is interfering to ask questions to try and understand the problem. Are there any clues? Any history of diabetes? Does his breath smell sweet? Can he date the onset of the sweet taste? Sometimes the cancer itself can cause loss of appetite, as explained in this post by Dr West (which you may have already seen):
http://cancergrace.org/cancer-treatments/2009/02/16/acs-mgmt/
best wishes.

Reply # - July 26, 2012, 04:12 AM

brigitte
Posts: 49

Certain spring I have read Dr Wests post. Dads had lost weight prior to cancer diagnosis but his weight loss stabilised and when checked the doctors said he is an ideal weight (well 2 kgs more than ideal weight) so his weight loss stopped. Dad later said he did not want to eat as everything tasted sweet so was not nice to eat anything.

Then he had the diagnosis, but he already had started eating more and forcing food down as he was due for the aneurysm repair. Post chemo he hardly eats for a week or so then slowly begins eating again and can start tasting different foods, so the sweet taste is still there.

I think when he goes for his pre 4th infusion blood test next week I am going to ask if they check his sodium levels as well....if not will ask the Sister at the oncologists rooms to ask for this as well.

He has no history of diabetes and does not know when exactly this begun, but its long before cancer diagnosis and treatment.

I really would like to get to the bottom of the sweet taste as it might improve his eating ability. When he eats, he eats and the only thing hindering this is the sweet taste.

Update: Decided to call the chemo room and asked them to check my Dads sodium levels from the last test 2 weeks ago. Apparently its normal. I have posted on other forums as well and asked if any members have had this taste issue pre cancer diagnosis or post diagnosis and treatment, but it seems not.

I guess I will stop thinking about this now as its seems unlikely that I will get an answer.

One more infusion to go next week and then at some point a scan. So feeling cautiously optimistic after the oncologist saying his supraclavicular lypmh node had decreased in size.

Reply # - July 26, 2012, 11:10 AM

catdander
Posts:

I'm cautiously optimistic with you Brigitte! and i'm sorry your dad has the tastes issues; they certainly aren't needed.
Janine

Reply # - July 26, 2012, 07:37 PM

Dr West
Posts: 4735

If you do happen to learn of more people with this complaint, I'd be interested to know it (and especially if you get an answer for why or find something to help it).

I'm not surprised they had his sodium readily available. It's a test that would be done routinely in blood work of someone on chemo, so if it were way off, they would likely have seen that already, especially if it would be considered as a possible culprit to explain a symptom that has been going on for a long while.

-Dr. West

Reply # - July 27, 2012, 01:13 AM

brigitte
Posts: 49

If I do find out anything more will definitely update here.

Thanks for the support and advice.

Reply # - August 2, 2012, 12:53 PM

brigitte
Posts: 49

Sorry but have to ask this question here. I am so lost on this new site and have no idea where to find the previous members' posts to read up on treatments etc.

Am very lost.

Dad went in today for his hydration pre chemo tomorrow. Its his 4th and last for now. The oncologist said that depending on the scan in 3 weeks time, what he is expecting is that there will be no more treatment for now and that scans will be taken at about 2 monthly intervals. Once there is any change then in the future then they will obviously re-evaluate.

Dads supraclavicular lymph node has shrunk compared to pre chemo.

He said that they found there is no value in keeping patients on chemo infusions or pills and they rather let them have a break and continuously monitor. Is this standard procedure?

I remember reading about people on single agent maintenance so would like to know a bit more about what usually happens post first line treatment elsewhere in the world where there is shrinkage, but not NED.

Reply # - August 2, 2012, 03:20 PM

brigitte
Posts: 49

Thankyou JimC that is exactly the type of information I was looking for.

Brigitte

Reply # - August 2, 2012, 09:00 PM

Dr West
Posts: 4735

I hope that discussion reassured you. Yes, I've made that exact recommendation to patients in my clinic earlier today.

-Dr. West

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